Anxiety/​depression/​ADHD/​autism/​bipolar & other neurodivergences on MeFi July 30, 2019 9:53 AM   Subscribe

If you are neurodivergent, how does MetaFilter affect you, and how does your neurodivergence affect your participation in and use of MetaFilter? How could MetaFiter -- technologically and socially -- better accommodate your neurodivergence?

Some ground rules for this discussion:

* People who are neurodivergent should be talking most of the time; neurotypical people, take a step back and mostly listen
* Neurodivergence is, for some people, a disability; some neurodivergent people do not identify as disabled
* You don't need a doctor's diagnosis to identify as neurodivergent
* Different people sometimes have conflicting access needs that cannot be accommodated simultaneously
* Even more than usual, please try to be gentle with each other and yourself in this thread

Neurodivergences have come up in the discussions around how we want the balance of moods in posts and discussions on the Blue to feel, how we feel about mods or other users reaching out to us privately, patterns in attendance for IRL events, and how we generally relate to MetaFilter (including the megathreads).

I figure we should surface this and talk about it as its own topic, about what we in particular find nourishing or difficult about MetaFilter, and about accessibility needs or preferences (knowing that some of our needs and preferences may clash with each others'). For instance, I've seen people refer to anxiety, depression, ADHD, autism, and bipolar affecting our experiences (that's a starting point and not meant to limit discussion to that set of neurodivergences).

Me: I'm a neurodivergent member -- I have ADHD -- but I'm not publicly out about my neurodivergence (thanks, mods, for letting me post this with a spare account). I get a lot of fun out of reading (sometimes even rereading) interesting comment threads, and MetaFilter is such an attractive distraction that I have set up LeechBlock on the browser on my laptop to stop me from spending more than 45 minutes on the site per weekday. (And then I sneak a lot of reading on my phone, where I don't know how to set up LeechBlock.) This means that sometimes I avoid speaking in a fast-moving thread, because I won't be able to keep up and reply to subsequent comments that day, because my LeechBlock limit will cut in.

The front page posts and comments I make often have a lot of links in them because I am sort of a magpie that way. I love finding posts via tags and am in favor of posters being pretty maximalist with the number of relevant tags on posts, including adding further tags to reflect topics that come up in ensuing discussions.

I do not think I have clinical depression, but there are definitely very low moments, and I'm thinking of trying to customize my tags on My MeFi to see only soothing/fun things on those days. I'd love knowing a list of tags you use for that sort of thing.

How about you?
posted by diss track able to MetaFilter-Related at 9:53 AM (367 comments total) 45 users marked this as a favorite

God, I hate bringing up topics touching on neurodiversity here--and often disability more generally--because the hot takes from NT folks can be so fucking frustrating and squish all interesting commentary, if we get any at all. I nearly wrote an angry MeTa about disability and the way it's routinely mishandled here after several neurodiversity-specific discussions went to hell in February, actually, especially surrounding the topic of self-diagnosis. It's a really frustrating space for me on that front, and it's not one that I trust moderation to be great at making space for.

I feel like it is one of those things that--if I bring topics from disability or neurodiversity here here, I had better have my educator hat on at all times, and I had better be prepared for hot 101-level takes on the topics at hand to take off. I frankly don't trust mod staff to have half a clue about ableism here, or any ability to really intervene in those discussions, so I am particularly heavy-handed about trying to shape expectations for discussions in those FPPs, which is of course supposed to be verboten in MeFi culture (at least, this comes up every. single. time. we talk about making FPPs).

I am autistic. Most of the time, I pass, but there it is. I would like to touch base with more people about some of the things I find from those communities, but it feels to me like there's no possibility to find and have the more complicated, interesting discussions, because either everyone is totally exhausted from frequent allistic/NT derails or else there's no commentary, period.

Ffkcghklphfl. I am probably aware you weren't hoping for a LIST OF FURIOUS FRUSTRATION VENTINGS, but that's very much the first thing that comes to mind for me.

Thank you for making this space, pseudonymously or not.
posted by sciatrix at 10:12 AM on July 30 [58 favorites]


Remember that neurotypicals prefer person-first language, so if there are any around we should refer to them as "people with neurotypicality."
posted by Faint of Butt at 10:19 AM on July 30 [50 favorites]


Some people prefer person-first language (such as "person with bipolar") and some people prefer identity-first language (such as "bipolar person"). I could swear that a previous draft of this post included a request to be kind and gentle regarding different people preferring different ways of referring to themselves and to groups. I'm sorry I forgot that. Please be kind about it anyway?

sciatrix, I'm glad you could vent a bit. Also: I was wondering if you and other autistic MeFites might like to talk about your experiences with IRL events, and with moderation techniques (like "letting things play out" versus not, and being contacted privately versus publicly, and comment deletion with versus without a note/reasons mentioned publicly in the thread)?
posted by diss track able at 10:30 AM on July 30 [6 favorites]


I have dycalculia and mild dyslexia. A Long time ago I requested that OpenDyslexi be made available as a MeFi supported font.

This was discussed in a Meta -posted by me and it was done in a matter of hours.

That change vastly enhanced the usability of the site for me and I’d like to take the opportunity to say Thank You to the Mods and [ I believe it was PB?] whomsoever was wrangling the site IT backend at the time.

Also the fact that the site is flat text, no weird banner or floating images/adds that scroll or chase users around the page is *heavenly*
posted by Faintdreams at 10:45 AM on July 30 [74 favorites]


As someone with a mood disorder, it makes my life easier when people are less harsh online.
posted by jb at 10:47 AM on July 30 [40 favorites]


Mainly I just try really hard not to make posts or comments about forms of neurodivergence that aren't my own. I might find some interesting article about [say, ADHD, though it could be plenty of things] or have an anecdote from a friend with that dx that's relevant to a conversation, that I might have an impulse to share. But it doesn't feel right to throw that out into conversation to potentially be mis-read and jumped on by neurotypical people, when I don't personally have the background and experience to handle that if it happens. I don't want to stir up a storm about a diagnosis I don't have, that then hurts people with that diagnosis or drags them into a whole explainer or argument that they weren't looking for to begin with.

I would have those conversations in my own friend community, where we're all either neurodivergent or well versed in related issues such that I can expect some basic things to be common language or understanding, and know that I'm not bringing a sudden shitstorm down on other people in the conversation, in a way that I'd never feel comfortable doing here.

When it comes to my own forms of neurodivergence I have a whole separate set of issues, namely that the formal diagnoses I have are things that some people consider neurodivergence and some don't, and the issues I have that are definitely neurodivegence are not formally diagnosed, so I sort of feel like I'm tiptoeing at the edges of many conversations, not sure if there is (or should be) room for me there. I really appreciate conversational framing like this that makes it really explicit that it's okay for me to be here even if I'm maybe not 100% sure everyone in the room would agree that I should be here.

Not sure right now what to say beyond that. I think those are the main effects on the way I behave on-site - a silencing effect, things I don't post and conversations I don't participate in. It's likely that the reason I haven't popped into an IRL meetup is largely about anxiety, but that's an issue with my social life in general and not something I have any particular need or expectation for the site to accommodate.
posted by Stacey at 10:53 AM on July 30 [11 favorites]


nthing Sciatrix's frustrations. Also agreeing with Faintdreams that the low-fi nature of metafilter's layout is absolutely wonderful. Not sure I currently have the spoons for this metatalk though.
posted by Homo neanderthalensis at 10:53 AM on July 30 [17 favorites]


I have ADHD, and sometimes "RTFA" is like saying "fly to the fucking moon". My eyes dart across the screen, taking in maybe every third word. If there isn't a good narrative element to the article, I'll probably get lost. I know that I don't clearly understand much of what I read, and it makes me afraid to comment. I HAVE made comments in the past that have demonstrated how I've completely mis-read the article. I tend to not comment unless I have a strong understanding or personal experience with the topic. Thats why I can write an essay about how good the Twins are doing this year, but I won't comment on a nuanced topic that is new (but really interesting!) to me. I'm afraid that I'll not understand what's going on, and make a big old fool of myself.
posted by Gray Duck at 10:57 AM on July 30 [23 favorites]


I appreciate this thread and the way it's framed! I find metafilter pleasingly easy to use, as far as function, compared to other sites I'm still trying to figure out what all the tools do. This isn't a new comment, but I do get lost sometimes trying to figure out what's normal socially here because of the scattered/vague/unwritten rules, injokes I can't figure out, unclear tone from text comments, or even sometimes I can't figure out what a comment is a response to, but that's not mefi specific. I appreciate when mod comments explain decisions or redirect conversations simply and explicitly.

Usually how I use the site is I go on Ask or the blue in the morning, open up 20 tabs of interesting posts and their links, and make my way through them throughout the day two minutes at a time. It is fantastic/horrible for ADHD.

I think most of my comments have been about mental illness, disability, or neurodivergence but I don't really go past surface level 'i relate to this' even though I have an impression that there are lots of people here that share these experiences. Discussions never really seem to go deep, so I'm not sure what the undestanding level in general is or how much explaining I'd have to do, or if I'd be overexplaining, or how welcomed my particular views would be, or if I'd be using the same vocabulary other people are. I'd love to see more specific posts, especially ones that had expectations shaped heavy-handedly, like sciatrix mentions.

Sometimes a topic related to ND will get a lot of comments from people who know someone affected, and I like the perspective that they bring. But I rarely see those people engage with commenters who are affected, and I worry, but am not sure, that the people who "deal with us" have more authority in a thread than we do, and I tend to sit it out instead of posting something contrary to them.
posted by gaybobbie at 10:57 AM on July 30 [9 favorites]


FWIW, in my experience, jokes about "person with neurotypicality" come from having heard entirely too many neurotypical people lecture neurodivergent people that only person-first language is acceptable (ignoring that many people and groups strongly prefer identity-first language) and isn't meant as a criticism of people who use PFL about themselves.
posted by Lexica at 10:58 AM on July 30 [26 favorites]


PS: in terms of site usability, the edit window is my best friend.
posted by Gray Duck at 11:00 AM on July 30 [17 favorites]


I have been an intermittent lurker here for about 15 years, during most of which time I have had a brain injury that makes it fatiguing to read for extended periods without breaks (the hard limit is about 20 minutes). RTFA is not always a viable option! Often I will just skim through the hot takes and tell myself some hilarious jokes in my head about the hot take I have about the hot takes, and how far afield my flighty thoughts have strayed from whatever offsite content the FPP may have had. I have never been a prolific commenter under any username, and certainly there is no way for me to keep up with any fast-moving thread.
posted by the fringe of the flame at 11:11 AM on July 30 [15 favorites]


I have a brain injury (among other issues), and I love, love the flat text/non-flashiness of the site. It's one of the sites that works best with my issues around light and stimuli. I wish it wasn't so tiny on mobile, though.

But, I started reading MeFi long before my brain injury, though, so I already knew how the site worked. I don't think I could learn how it worked as a newcomer. While the non-threaded comments are easy on my eyes, my brain has to do a lot of jumping from subtopic to subtopic, comment to comment, to keep track of what's going on and where the conversation is going and who is talking to who. I usually avoid long or complicated threads because of this.

Brain injury rarely comes up as a topic, so I haven't had a lot of issues with having to educate NT people or 101-level discussions. When it does come up, it's generally in the context of sports (especially football and CTE), and all I have to say about that is that's a small percentage of the people with TBIs out there.
posted by heurtebise at 11:12 AM on July 30 [15 favorites]


First I want to say thank you for bringing this up. Maybe due to the large number of important metatalk threads we've been having lately, I've been thinking a lot about my participation--or lack thereof--here, and how/whether to participate more, and what obstacles there would be to that. It's very strange to spend several hours a day here, and only comment every couple of months.

What I find difficult--and this is not, I think, something that can be accommodated away--is that with a smaller group, with people who know me, whose names I recognize, there is enough assumed good faith that commenting doesn't seem like quite such a minefield. Two of my strongest anxieties are miscommunication (either being misunderstood or misunderstanding someone else, which also extends to misunderstanding conversational contexts, what's okay to say when) and getting into trouble (an absolute terror on many fronts).

(Wait, I have a caveat because I realized I didn't mention why I felt okay about commenting here: I have been diagnosed with multiple anxiety disorders. I have not been diagnosed with either ADHD or autism, but have had discussions with doctors about them because several elements from each diagnosis seem relevant to my life. I spent around a decade on disability due to these disorders, and while I have developed both coping strategies and a pretty good sense of how to treat things medically (mostly) (or, rather, sometimes), I do still consider myself quite disabled and feel quite strongly about that being part of my identity.)

One way these anxieties play out in internet conversation is overthinking the number of caveats necessary to make a point, paring down the point further out of a concern for being terribly wrong, and essentially ending up with nothing to say; either the labor and fear are too much and I end up deleting my comment, or I say something much shallower than I meant to say. My coworkers are used to my emails being a paragraph of information and then several bullet-points of caveats and reminders so that what I'm saying can't be misconstrued. I imagine they're as exhausting to read as they are to write.

(The other day I was advising an online friend about an exercise we were talking about, and it took SO LONG to make the point because I wanted them to know I was cognizant of the political problems involved in conversations about working out, and I was so afraid of offending them, and of course they're a nice person so they laughed it off but I found it striking how paralyzed I was in trying to say something simple.)

We had a thread on the blue the other day that mentioned Freud and Dickens, and as a former English major who spent far too much time studying psychoanalytic litcrit, I should have been in my element, but I was so afraid of saying the wrong thing that I left the thread and removed it from my recent activity out of sheer embarrassment.

I am talking a lot about my particular emotions in this comment, and I think that's another element that keeps me from commenting much; my friends are used to me having to work out a lot of emotions in our conversations, just because I am sort of limited in a moment-by-moment understanding of my actual emotional state and how it is impacting both my words and their tone, and so if I talk about them up-front, I feel a little more comfortable--again, so I won't be misconstrued--but I think that doesn't work very well for a Metafilter thread comment, because no one wants six paragraphs of I wonder how to feel about what I am saying now and then a few words of actual comment.

I want to participate! So many threads are so rich in interesting links and good discussion, and I follow them religiously. But I have not yet found the trick of it yet. Again, I'm not sure there's anything worthwhile in saying this, since there's nothing to be done about it other than either posting or not posting. But maybe someone has a similar experience and I can steal their tricks.
posted by mittens at 11:16 AM on July 30 [60 favorites]


Wait, I got so wrapped up in talking about my problems that I forgot I had an actual usability issue I wanted to bring up. I was originally trying to figure out how to talk about this on the megathread metatalk, but could not figure out how to word it. I find using the recent activity feature really hard. While I wouldn't want it to be all web 3.0 with lots of slidy-shiny features, there's something about its flatness I find difficult to use, which is a shame because I can't always keep a thousand tabs open here on my PC.

I think what I would like is (a) an ability to see more than 10 past comments, especially for fast-moving threads, because if I sense that the conversation has moved on in a major way, it's so hard to keep up with without reopening a tab to look at the whole thread, try to find my place again, etc., (b) some kind of visual cue as to which thread I'm in--since they all look alike, sometimes I'm not sure which one I'm reading, if I've scrolled down far enough past the bit that shows the title, (c) some way to fold up threads, like, I want to read this one later-later, and the one I want to read later-now is further down, so I want to fold up the one on top to make the next one easier to see--and I think I've explained that very badly. I guess I just want some more configuration options, since I'm now using recent activity much more often (and probably will be using much much more often with the death of the megathreads).
posted by mittens at 11:25 AM on July 30 [18 favorites]


One of the things I try to do very consciously, I should add very explicitly in this thread, is force myself to take breaks to let threads breathe and let folks process. I make a lot of use of Forest and other apps to encourage that sort of thing. I spend a fair bit of time thinking about the speed and volume I try to comment here, which is--frustrating.

let me pause.

okay. Let me just bring up the concept of cognitive load, right? So I'm autistic, I pass most of the time; I mentioned that. Which means that I spend my entire life interfacing in such a way that I can communicate with other people in ways that work better for them; I am constantly running a semi-conscious set of calculus in my head when I talk to people. I am very explicit about the things I do socially because I have, by and large, thought them out explicitly. Social interaction is honestly one of my special interests, and the fact that I can articulate more or less every thing I do socially can, I think, make me an asset when discussing metacommunity dynamics.

But because this is something I am thinking about as I do it, and because I am working hard to pass and to keep myself tucked up neatly at all times, and because I am swimming in a society that will demand more and more social adeptness out of me, it can be really hard to work out what kinds of expectations are fair and which ones do in fact apply to me and which ones don't. What mittens says, about looking for assumed good faith; that resonates. It's one of the big ways I use to communicate with, for example, favorites--I am often sending favorites to communicate "I'm glad you said that" and other attempts to express small positive nonverbal feedback.

Metafilter may actually be one of the places where I take on the most cognitive load, day to day, come to think of it. Some of that is the whole diversity thing I mentioned in, uh, probably the state of the site thing; we're a big tent, with a lot of perspectives, and that means an increased level of communication and spelling things out which are generally automatically understood within smaller groups of people. Some of it is also that I care a lot about this place and spend a lot of time trying to send little indications of good faith; it's an important place to me, but that means I invest a lot of time in it. And part of it is that I don't--it's... hrm. I might need to chew on that a little bit.

God, the agony of being concerned about misunderstood. That resonates a lot.

Also: I was wondering if you and other autistic MeFites might like to talk about your experiences with IRL events, and

Haven't been to one for MeFi; I'm more or less overwhelmed by my offline social life as it is, tbh.

with moderation techniques (like "letting things play out" versus not, and being contacted privately versus publicly, and comment deletion with versus without a note/reasons mentioned publicly in the thread)?

I personally vastly prefer public communication in all cases, in large part because it lets me calibrate whether things are fair or not and what the community as a whole thinks, and bounce ideas off of a larger group of people. I find that private conversations tend to be comparatively exhausting and terrifying for me, and I would really just rather stand in the middle of a bunch of people and see what everyone thinks. This is partly trauma on my part--hey, gaslighting, my old friend!--because I feel safest with lots of eyeballs on me and everyone else, so that we all have a sense for what is fair and agreed upon.

I also find that when I have larger problems and start up discussions with mods in private, I am comparatively likely to become exhausted and be unable to pick up the conversation in time for it to feel timely, and there's more pressure on me specifically to explain things or reach mutual understanding. Things get dropped because I don't have the energy to continue the conversation right then, and then the ball has been in my corner and I wind up feeling too awkward to keep talking. If it's in public, a) people can see what I had to say and think about it and riff off it if they like it or chew on it otherwise, and b) the effort isn't ever, ever wasted. Because I said the thing and people can read it and it's available to check and reference later if necessary.
posted by sciatrix at 11:34 AM on July 30 [29 favorites]


One caveat to what I said above -- while I definitely love the low-key aesthetics of the site for my sensory issues, they are best for reading the site, not participating in it. I'm actually more of a visual communicator since my brain injury, and find images or drawings to be an easier way to interact with people, since putting words together takes a lot of effort, especially after reading/comprehending a thread.
posted by heurtebise at 11:43 AM on July 30 [2 favorites]


I can't speak to usability issues at this moment, but what I can speak to and am glad this thread happened to appear so I can say, is the casual ableism and stuck in the 1990's way Mefi discusses disability and neurodivergence and mental illness has become untenable to me. I would never recommend this site to a friend in any of those categories. A lot of voices have left the site who had a lot of smart things to say in this regard - I think of jaguar and divined by radio off the top of my head, and maiasz who may be around but doesn't post much anymore - and we're left with a lot of people talking about things they don't know about, saying dressed-up versions of what the meanest voices sound like in our heads and in society.

The level of education is indeed stuck at 101, much like how we deal with other issues of marginalization. I still remember the whackadoodle MetaTalk and the Susan Hawk thread and a million little microgressions, and the need to perform your story in such a way that your trauma is acceptable and listened to. We're good at high-functioning, appropriate displays of difference, I guess, and part of Metafilter is that the idea someone could be amongst you who might be that on the surface but isn't actually that seems confusing for people - I don't know, man. I think it's probably time for me to leave, because I don't see any of this improving. So that's one less neurodivergent voice, whatever. But it's not whatever, because you need those voices, but there isn't a place for deeper engagement or a trust of safety...people have said all this before. And the hypocrisy with which we have threads about like, mentally ill celebrities, and with which we ogle the sick in AskMefi and in other places, and the extent to which ableism just does not seem to matter as a thing............

Here's a specific thing: I think there should be warnings on threads that talk about mentally ill lives in terms that have been proven to cause people to attempt suicide which aren't deleted by mods? That's a feature request.
posted by colorblock sock at 11:45 AM on July 30 [40 favorites]


I should add: I have absolutely taken a break from this site in the past because autism issues were not well handled, despite flagging. Despite commenting. I have actually tried to comment to mods, commented in thread, contacted mods in an effort to explain the dynamics with the commentary that I was trying to deal with, and had the mod in question helpfully delete the comment I had composed explaining why behavior wasn't acceptable as well as the originating comment, apparently under the belief that this was the outcome I wanted.

I was just trying to fucking explain why the original shit wasn't okay in an effort to behind-the-scenes get mods to listen on this topic, since I'm not supposed to do it here, to help mods have an idea for what to look for and listen for. I was trying to add additional pay attention to this, it is important signaling to the comment I'd left pushing back on, I think it was some bullshit hot take on this thread (which was indeed a massive shitshow, by the way, and in which MeFi comes off awfully bad) arguing... I can't even remember. It was crappy, and I put all this effort into explaining why it was crappy, because it was like the third comment that day and I figured that okay, if I can't have good discussions with other people who get this, maybe I can at least be educational. Maybe the people reading this might learn something. Maybe the pushback will at least tell other autistic folks watching, exhausted, that I am here.

And I talked to the mods hoping that the comment + emailing would explain why there were ongoing issues with the way we talk about autism enough for someone to pay some fucking attention to it. And then it all got deleted, and I couldn't follow up on the fucking email exchange because there was a car accident I had to deal with, and I still didn't communicate that this was important, and--god! I was so heartsick! The mod note wasn't as specific or as blunt as mine was, it wasn't detailed, it didn't teach anyone anything except don't do that, but clearly that wasn't fucking good enough from the way the discussion had gone from the comments that were left!

So, you know. I'd miss colorblock sock's voice. And I'm sure it's not the only one you might lose along the way.
posted by sciatrix at 11:56 AM on July 30 [24 favorites]


colorblock sock, thanks for writing that comment.

I have struggled in a few different milieus, not just metafilter, with how much to disclose: it starts to feel like a mode of self-harm, at a certain point, to volunteer things from your own experience among a group of people who you can expect will react with indifference at best. There are a lot of tacit norms here that I can tell I fall outside specifically because of disability, and it has never felt worth it to point them out.
posted by the fringe of the flame at 11:57 AM on July 30 [10 favorites]


Sorry to be nitpicky, but are anxiety/depression/bipolar/mental illness really considered "neurodiversity" by most people or some definition I haven't heard about? I have only ever heard it used to describe things like autism and ADHD (and similar developmental/sensory/learning issues), and I'm really not thrilled about lumping those in with mental illness. Neurodivergent implies to me thinking differently on a fundamental level, not just because your brain doesn't make enough neurotransmitters and starts lying to you.

Maybe I have been misunderstanding all this time or feeling too protective of the word but it is really rubbing me the wrong way (as a neurodivergent person according to the definition as I understand it).
posted by randomnity at 11:59 AM on July 30 [14 favorites]


(And one last thing, because it occurred to me, before I take another pause break from the thread:

Mods have my explicit permission to share all MeMails relating to that thread, and I am comfortable sharing everything I had with respect to those conversations. This isn't a threat--I know that other people get stressed about sharing private correspondence publicly, and I won't do that without some discussion of it here first--but like I said, I'm giving the thread a break again for an hour or so, and I thought I would leave that comment here. If it comes down to mods concerned about approaching me privately vs. publicly, I personally would much rather mods comment here, publicly, than contact me privately.)
posted by sciatrix at 12:02 PM on July 30 [10 favorites]


Here’s my particular cocktail: ADHD, major depressive disorder, and PTSD.

It is fantastic/horrible for ADHD.

This is absolutely my experience. In fact, getting completely and inextricably sucked into MeFi (especially AskMe) to the detriment of my work was one of the things that led me to get help (though I didn’t realize it was ADHD at the time).

But this site has primarily been a boon for me and my mental health. People are open here about their own mental health in a way that I have never experienced in a community IRL, and this is where I have done a vast majority of my initial learning about the experience of living with each of my diagnoses as they have come up.

In particular, this site has been one of the places I have been most comfortable talking about my experiences as a person living with PTSD. IRL, I am always wary of not being believed (because, in fact, I have often not been). But here I feel safe enough to open up. Likewise, even in the depths of my depressive episodes, I feel like I can express that experience here, and there are people who care, even if there’s nothing they can do.

I speak only for myself, of course. But that’s my experience.
posted by ocherdraco at 12:03 PM on July 30 [33 favorites]


I don't have a neurodiversity but have multiple mental illnesses and am on disability for them but I don't know if it's welcome in this thread as I don't want to take space from those who are neurodiverse. However, I will confirm that ableism is alive and well on Metafilter but I do post and mention my diagnosis just to prove to people that mentally ill people (especially the "messy" ones like dissociative disorders) are here amongst you and real live people. I'll happily step out now.
posted by kanata at 12:11 PM on July 30 [27 favorites]


are anxiety/depression/bipolar/mental illness really considered "neurodiversity"

not universally, but this isn't the first time I've seen them included. I appreciate it, because there can be considerable overlap with mental illness and autism and ADHD (and probably others I'm not familiar with) and it can be hard to separate or "correctly" identify them. I'm happy to have more people included who might identify with neurodiversity and get some benefit out of the concept/community, although I hear where you're coming from and have seen that perspective before, too.

This is something where I want to go off on a tangent about psychosis and diagnoses in a general sense that I think is interesting, because mental illness was a special interest for a while so I learned a lot and thought a lot, but I've forgot most of it and have no idea if it's relevant or appropriate, so I don't think I could make a good comment about it that other people would understand or care about, but I think this thread is a good place for me to say this happens a lot for me here?
posted by gaybobbie at 12:12 PM on July 30 [9 favorites]


I'm sorry, I didn't intend to make anyone feel unwelcome. It is really just that use of the label I (strongly) object to, not the inclusion of a wide range of people in this particular discussion. The whole point of that term was to emphasize that autism etc are differences, not illnesses to be fought and cured, in contrast with things like depression. Anyway I'll bow out before I dig myself even further than I have already.
posted by randomnity at 12:30 PM on July 30 [8 favorites]


There's lots of ableism and plain old cluelessness on Metafilter, but I also feel way safer being open about my ADHD and sensory processing stuff here than I do in my face-to-face interactions.
posted by ArbitraryAndCapricious at 12:30 PM on July 30 [10 favorites]


A major challenge for me is that there are days and weeks when I just can't participate much or at all, and conversations go by and I miss the opportunity to say what I would have liked to have said. Today is one of those days.

So for now, I just want to mention that I feel like my participation in the megathreads have had an enormous positive impact on my adjustment to my new brain, following the removal of a large meningioma and the resulting scar across my frontal lobe, and I am grateful for the opportunity and all of the kindness and support I have been shown here, and most especially from Doktor Zed.
posted by Little Dawn at 12:34 PM on July 30 [26 favorites]


randomnity and kanata and gaybobbie: I'm sorry. I have probably misunderstood and miscommunicated some stuff around this. I meant to make this thread open to people who have mental illnesses, who identify as mentally ill, and so on, as well as people who do not consider their neuroatypicalities to be illnesses or disabilities. I thought that "neurodiverse"/"neurodivergence" is an umbrella that covers _all_ the different ways our brains work, including depression, anxiety, bipolar, PTSD, traumatic brain injuries, and dissociative disorders, along with ADHD and autism. I got the idea in my head that "mentally ill" or "mental illness" was kind of a slur and I should be using "neurodivergent" to talk about the whole set. I've also talked with people who do not want their depression or bipolar cured, which feels relevant here. It sounds like I phrased things wrong and I should look up some phrasing suggestions. I'm really sorry for rubbing you the wrong way, randomnity, and for making you feel unwelcome, kanata.
posted by diss track able at 12:37 PM on July 30 [17 favorites]


I have only ever heard it used to describe things like autism and ADHD (and similar developmental/sensory/learning issues), and I'm really not thrilled about lumping those in with mental illness. Neurodivergent implies to me thinking differently on a fundamental level, not just because your brain doesn't make enough neurotransmitters and starts lying to you.

I do not find this to be a helpful characterization for a few different reasons, and I hesitate to point this out because I don't want to sound fighty or anything, but also because I'm not sure I can explain it very clearly.

I don't think the characterization takes into account the way depression and anxiety affect cognition. They absolutely do change thinking on a fundamental level. Nor do I think putting some diagnostic categories into the "mental illness" bucket and leaving some outside, is helpful. It ignores too the underdiagnosis of things like autism in people who have a very obvious anxious or depressed component, since often what gets diagnosed and treated is the thing that is easiest to cover when one's doc is billing insurance, and which is easiest to throw a prescription at. And while the "not enough neurotransmitter" view of these things is prevalent and makes for good advertising copy and easy pamphlets so a doctor can try to explain what's gone wrong inside one's head, it really isn't a good enough explanation of anxiety and depression, as though we simply need to be topped up on our serotonin, or have our norepinephrine bladders drained.

On an anecdotal level--apply all necessary caveats there--it seems like everyone I know with "mental illness" issues also has a component of developmental, sensory, or learning issues. As though these things are not, maybe never were, discrete categories, but treated that way by doctors for their own purposes.

Again, this is in no way trying to be fighty, and I hope I haven't phrased anything in an insulting way.
posted by mittens at 12:39 PM on July 30 [24 favorites]


Oh I didn't feel unwelcome. I just wanted to make sure that I didn't take space away from neurodiverse people. I'm also sorry if I made other mefites feel unwelcome.

I step out of most mental illness threads now as I find most of the responses assume a US perspective and that going against CBT is frowned on. Mentioning any other modes of therapy that help tend to get drowned out. I .. well, I find that while I do mention my diagnosis I can't really talk about how I view it as it is too "messy". I do feel like there is one right way to be mentally ill and if you don't play into it people write you off as "crazy". But that is my own feelings of not being a good "survivor" (aka getting over it, transcending, and kicking ass). No one really wants to hear how a mentally ill person lives if it is outside the norm. This is a culture problem and not a mefite problem. But it does wear you down.
posted by kanata at 12:45 PM on July 30 [30 favorites]


There's so much I would like to say, but I don't have the energy. For now, all I'll say is this: people on this site tend to talk about mental illness in ways that I find very hurtful. Thread after thread, for years now, I can count on a discussion of mental illness to leave me feeling like garbage. People are so quick to condemn, so quick to make it clear that sympathy is conditional. It's treated as if it's just a political question (like, the abstract question of victimhood), rather than as something that might affect other users personally. Call it ableism, call it stigma, it just sucks.

I'd join colorblock sock in taking a break from this site, except I don't even think I'd stay away.
posted by shapes that haunt the dusk at 12:58 PM on July 30 [29 favorites]


I get that.

Askme was where I learned the later misdiagnosed mental illness one doctor told me I had made me a hurricane of disaster and everyone should run and that I'm doomed for life to cause people pain.
posted by kanata at 1:06 PM on July 30 [7 favorites]


Oh sorry, I don't know where I got the idea colorblock sock was taking a break. I didn't mean to make you stand out or anything. I'm sorry -- I have a fever today, and it's bringing down my comprehension rate from its usual 70%. I don't know what's what.
posted by shapes that haunt the dusk at 1:16 PM on July 30


I'm battling depression at the moment and it means I often surf metafilter from my phone while I'm in bed, because I can't face sitting up at my computer.

The site is really not mobile friendly.
posted by daybeforetheday at 1:21 PM on July 30 [7 favorites]


I remember worse in that autistic people of color thread, so I guess a lot got deleted? And I do remember gritting my teeth through a lot of similar threads and I guess not registering it because it was what I expected on this site. That sucks. I always see and appreciate the people in a thread who speak up about their experiences and go against the grain of - what y'all are saying above. Meanness, assumptions, stigma, ableism.

Still feel weird about the hikikomori thread so I was trying not to, like, be too emotional or whatever, but a lot of threads feel like that kind of hostileness. I don't know if anyone else struggles with a brain-weasel of having a hard time figuring out if they deserve anger or not? That's how I feel when people talk about, like, specific mentally ill people being shitty people or being a burden and I know I've been a shitty person or a burden at times. They're not wrong and they aren't obligated to be nice and maybe I'm being entitled to want a different conversation? Genuinely don't know how to handle that one.
posted by gaybobbie at 1:29 PM on July 30 [17 favorites]


One more thing: mentally ill & neurodiverse people are not burdens. Disabled people are not burdens. People who need care for a day, for a lifetime, are not burdens. We are not burdens. I mean, only in the sense that every human is a burden because we all need love and help and sympathy? But to call that burdensome is frankly cruel. The demands we place on people for total self-sufficiency are cruel. We are as entitled to kindness as anyone else, and the fact that we have to doubt that at all or call a desire for care entitlement is just. Not okay. It is so scary to say it's not okay, which is in itself not okay! It has been a lifelong battle for me to believe this, it will continue to be so as long as the world is the way it is, but if I can help anyone else not believe that my time having commented on this site will have been worth something, at least.
posted by colorblock sock at 1:37 PM on July 30 [52 favorites]


Holy hell, did the hikikiomori thread go there? Goddamn. Clearly I need to check in on it, because I took one look at it and noped on out.

And of course you are not the only person who struggles with that, gaybobbie. I feel like that all the time. That's one of the reasons I feel most safe and comfortable in public: in public, I don't have to rely on my own judgement of whether I am worthy of anger. In public, I can triage that decision across other people, who don't have the terrifying weight of advocating for their own worth in the moment.

A lot in that thread did get deleted, several times. I remember it, too. But even what's left is still not great, and the memory of the deleted comments I think poisoned what might have grown there instead.
posted by sciatrix at 1:42 PM on July 30 [11 favorites]


For now, all I'll say is this: people on this site tend to talk about mental illness in ways that I find very hurtful. Thread after thread, for years now, I can count on a discussion of mental illness to leave me feeling like garbage. People are so quick to condemn, so quick to make it clear that sympathy is conditional. It's treated as if it's just a political question (like, the abstract question of victimhood), rather than as something that might affect other users personally. Call it ableism, call it stigma, it just sucks.

This. So much this. I work really hard in my real life to try to remove the stigma from mental illness and then I come here and have to intentionally stay away from threads about mental illness because voicing my thoughts never gets me anywhere. And I've recently learned that I really need to stay the hell out of contentious MetaTalk threads because holy shit, people really seem to want to read the worst of intentions in every single word.

I currently live with medically managed severe anxiety and major depression. I'm mostly okay! But there are days when I'm in a spiral and sometimes those days coincide with terrible things happening here and it all gets really bad.

And if one more person tells me to exercise or eat healthy or make time for me or meditate or do yoga or get outside more...I HAVE DONE AND DO ALL OF THOSE THINGS. And guess what? My mental illness didn't get cured. Yoga cured your sister's roomate's cousin of his anxiety disorder? Awesome! It DOES NOT work that way for EVERYONE.

A lot of the misunderstandings, for me, would be immensely helped by clearer language. One-liners and hot takes are shitty responses to serious topics and yet people still do it. It would be so great if people could go into an AskMe, for example, and instead of saying, "It's been proven that going outside makes you feel better!", try "If you haven't tried it already, it's been proven that going outside makes you feel better!" Like, that's a world of difference in one half of a sentence. It's attempting to be helpful but also being mindful that sometimes askers forget or don't think to include salient details.

I could go on for days, I really could. And I've read over this comment probably 20 times already, looking for something that could offend someone and making sure that I'm being clear (I'm still not sure that I am?) because I live in fear that I'm saying the wrong thing and make someone feel bad.
posted by cooker girl at 1:48 PM on July 30 [42 favorites]


That hikikomori thread was bad, y'all. Really bad. I just went and commented in there.

Other than that--I'm not entirely comfortable self-diagnosing as autistic, but I am definitely some kind of non-neurotypical. I don't really have much else to say in this thread other than hi, I'm here.
posted by capricorn at 1:57 PM on July 30 [16 favorites]


Wordless hugs, colorblock sock. (also, gosh, sciatrix, i thought this when you mentioned it earlier, but the thing about feeling safer in public than private conversations ... oh my god thats a trauma response. i feel you)

A lot of the misunderstandings, for me, would be immensely helped by clearer language. One-liners and hot takes are shitty responses to serious topics and yet people still do it. It would be so great if people could go into an AskMe, for example, and instead of saying, "It's been proven that going outside makes you feel better!", try "If you haven't tried it already, it's been proven that going outside makes you feel better!" Like, that's a world of difference in one half of a sentence. It's attempting to be helpful but also being mindful that sometimes askers forget or don't think to include salient details.

I super agree with this. I've seen users recently de-escalate heated situations by being able to respond in a way that acknowledges the other person in a better way, for instance. I try to use clear language even though I have disorganized speech, like, as a symptom and sometimes I go back and read a carefully written comment and it's nonsense. And a lot of people in this thread mentioned rewriting/rereading stuff a lot, being careful to phrase things respectfully, putting a lot of effort into contributing in a good way. Seems not strictly related to neurodiversity but not-not related? Maybe a curb-cutter kind of effect of people making their writing more accessible/respectful making it nicer in general?
posted by gaybobbie at 2:18 PM on July 30 [7 favorites]


OK I'm glad other people thought that hikikomori thread was awful, because I did and I couldn't tell if it was just me or something. I've always gotten the impression that if I feel bad about that kind of thread, it's because of something wrong with me, where I should be more thick-skinned, or not take things to heart. Like, I don't want to pathologize myself, but I wish people knew that some of us are really sensitive to the way that things are discussed (I wish I could think of a better word than "sensitive", because it's a loaded term in so many ways). It seems like that sensitivity is often just seen as weakness, rather than a legitimate consideration in how conversations should be shaped. Like, if I think something looks harsh and mean, that automatically just reflects badly on me, rather than on the comment itself.

Anyway, trying to write about this with a fever is very difficult, but I hope that makes sense.
posted by shapes that haunt the dusk at 2:31 PM on July 30 [18 favorites]


I have thoughts on this but I am afraid they will not make sense and I will hurt someone. I might try later when I have time, but that doesn't always work for me which is one reason I don't comment here much in general. I do type, re-type, and then just delete about 10 comments a day on average. I've read, typed, and previewed this comment many times now, but I'll hit post instead of delete this time. Thank you diss track able for posting this. Thank you to all for commenting. This:
I don't really have much else to say in this thread other than hi, I'm here.
is incredibly helpful to me as someone who is here too. Feeling different and alone is very powerful but it takes so little to ease that loneliness for a while. I agree with a lot of what's been said here so far and am happy others have the courage and can find the words to say it.
posted by Clinging to the Wreckage at 2:34 PM on July 30 [13 favorites]


So a lot of us in this thread have spoken about our experiences talking _about_ disability, mental illness, and neurodivergence on MetaFilter. I get that this is part of talking about what we find difficult or nourishing about MetaFilter, and about accommodation, and there's a lot of solidarity and experience-sharing to build and this is a space people feel comfortable doing that. I'm glad I could help people make a space to ease this particular loneliness, even if only for a bit.

I do also appreciate people talking about other topics related to inaccessibility and accessibility/accommodation on the site: fonts and layout and mobile, people being less harsh, "RTFA", tabs, the edit window, keeping up with long/fast-moving threads, tracking subtopics, worrying about being misunderstood, the difficulty of sharing meta-commentary about your emotional state, Recent Activity and threads looking alike, speed and volume and taking breaks, cognitive load and tracking others' expectations, public vs. private communications, visual vs. text for posting, getting sucked into the site as a distraction, megathreads, and clear/careful language. And more.

And I'm grateful for people who are just saying -- "I'm here". It's fine if that's all you want to say. Welcome -- we're all in this together and thank you for letting us know you're here. But also in case some specific questions help spur thoughts:

* How do you deal with the balance of moods in posts and discussions on the Blue? Especially if you are anxious or depressed? Do you want better tools to manage the mood of your MeFi information diet?
* Are there folks here who would prefer mods reach out to them more in private, as opposed to correcting them in public? This is not to erase sciatrix's experience, but to make space for anyone who has different needs.
* What do you say and do in order to take a short break from a thread or from the site in a way that feels good to you, and if you find there's anything going on that makes you feel addicted, what tools do you use to try to reduce usage?
* Do you use any particular user scripts or preferences that you've found make your experience of MeFi a lot better?
* Is MetaFilter Chat something you find appealing? fun? inaccessible?
* Do you find the podcast hard to access, because it's audio? Would any of you be interested in helping crowdfund transcripts for it?

Grateful for everyone's thoughts.
posted by diss track able at 2:41 PM on July 30 [5 favorites]


I have always struggled with anxiety and depression. I was diagnosed with ADHD when I was no longer depressed or anxious but some symptoms still remained. Medication is great. One thing I can't seem to get over is a hyper reaction to demeaning comments that makes me feel like I'm viewed as inferior and perceived rejection. Metafilter is FULL of that, but so is the internet so what can you do. Like if you start looking, I guarantee in any thread about anything media/creative will have near the top a derisive comment that is crafted to be as hurtful to who the person who likes the thing is as possible. It's really something if you start noticing it.

Anyway, I wish I was less sensitive like that. The internet makes that specific kind of criticism both very easy to do and very easy to find. I ultimately wish we weren't so THIS or THAT in the most aggro way possible about... everything.

An example of the comment was in a silly movie thread on the blue: Snyder is garbage. Anyone who likes Snyder is garbage. The only good thing about this "movement" is making these people easier to identify so that they can be avoided.

I don't even like his movies really! But I have enjoyed parts of them and it just... made me feel awful. Like I was incapable of being a human who belonged in the world. This made me feel awful for a solid few hours, I think. And it's totally okay to criticize things, I do it all the time!, but it was the … dismissiveness. I have enough trouble wanting to exist as it is.

$0.02 in the bank. I am working on it in therapy, but it is the one issue I seem unable to get over. I guess I don't like myself very much even though I try to do good.
posted by OnTheLastCastle at 2:42 PM on July 30 [15 favorites]


I am autistic, and I'm pretty decent at masking for the most part. I don't recall having mentioned my own neurodivergence on MetaFilter before, but I've certainly mentioned PTSD and found that the community here has handled that adequately. I don't participate a whole lot, but that's more a factor of getting stuck in an endless editing for clarity and best possible word choices and making sure I'm communicating exactly what I mean and not just posting an obtuse jumble of words -- well, at this point, I've been working on this comment for over an hour. (And I haven't yet posted it; three hours later, still editing.)

Thank goodness for the edit window (I could do with an even longer one, honestly) and the unchanging plain text on a solid color background. These things are good, and the layout of this site is one of the reasons I haven't really looked for an online community elsewhere. Again, not that I actively participate much.

I tend to skip out on threads when I can tell it isn't something the community is going to deal with well (like the thread sciatrix mentions above where, after reading and appreciating the article, I could totally see where it wasn't going to go well). I probably should've just avoided the hikikiomori thread, too, because ugh.

There's the general not-specific-to-Metafilter wish that people avoid sarcasm as much as possible, especially on the internet. I have a hard enough time reading sarcasm in person with the people with whom I'm closest; given only text, it's impossible.
posted by The Great Big Mulp at 2:42 PM on July 30 [6 favorites]


Grateful for you saying we are not a burden, colorblock sock. I feel that a lot on here and well, basically the world telling me I am. And then turning around and blaming me for not asking for help. Constant repetition that since I'm disabled I'm a tremendous burden on everyone. And it is only through exploring disability groups online that I've been able to ease that a bit. Able people don't get it in the way that others hurting do.
posted by kanata at 2:44 PM on July 30 [17 favorites]


Also, here is a shout-out to the mods. I came up with the idea for this post, got a bunch of useful feedback from them as I edited it, and worked with them to time it for when they and I could follow up on the ensuing discussion. They were so helpful and responsive on this. Thank you, moderators.
posted by diss track able at 2:57 PM on July 30 [20 favorites]


I have some serious mental health issues. I don't define myself by them and generally keep those struggles as private as possible, but they have had and continue to have an enormous impact on my life. So I am very cognizant of the need to take them seriously, take them into consideration when making even small decisions, actively manage them. This site is one of the main places where I've learned how to do that, and where I've found consistent support in my efforts to do that. When I get derailed even now, this is one of the first places where I turn. Because people can pooh pooh, but honestly, there is a lot of wisdom and kindness here. And I say that as someone who has plenty of familiarity with mental health professionals.

I was on Metafilter a lot even when things were pretty dire, and I got so much guidance and just plain compassion. AskMe was and is a great resource. MeFites can be so kind. I'll never forget what a good friend tel3path is, she was so generous with herself and I'm still so grateful.

Some ways that Metafilter is especially accessible to me, personally: I love how MeFi is always consistent and plain in its visual style. I love how responsive mods and even other users are to questions, how people will just answer at face value and are pretty available. I also love that discussions are not very time sensitive. Threads are open for weeks, and people can read or answer whenever. Then they get archived forever and you can dip in to all of them whenever you want. Even MeMail is not super time-sensitive. That's such a relief when you're having a lot of trouble. You can interact at your own pace. Something that I think could be helpful are improving tags, because since discussions aren't particularly time-sensitive, organizing them more clearly by subject might be better. But that's sort of neither here nor there.

In terms of IRL events: during a very rough patch, I went to my first meetup. I had been relatively open about my thoughts/feelings on the site and people had reacted kindly, so it felt like a pretty safe way to try engaging again in "regular life." Anyhow, Divined by Radio was in town and it was actually a whole lot of fun. Something that really struck home that night was that Mrs. Pterodactyl said that she was happy I'd come and would like me to come back out with them again. That meant so much to me. And not only did it strike me that Mrs. Pterodactyl is a lovely person, it also struck me that Metafilter in general -- at its best -- can foster such an exceptionally direct, warm way of communicating with each other. That's so rare -- not just on the internet, but anywhere.

Which is probably pretty rich coming from me, a consistently brusque and snarky asshole. But honestly, I have learned to be much gentler and more nurturing on this site, am still learning, and I do want us to continue to foster an atmosphere where gentleness, earnestness, and warmth are welcome.
posted by rue72 at 3:06 PM on July 30 [21 favorites]


Earlier this year, I decided I was going to do some posts about autistic adults and children and try to move the needle. They went very poorly, despite the literal hours of care I put into them in terms of finding good accessible links and being careful about framing. After this post about ABA, I stopped. I believe that most of the absolutely vile comments have been deleted, but I honestly can't re-read that thread without going into a suicidal spiral so WHO KNOWS. Strong trigger warning to other autistic people about clicking on that link. I mean, hell. I don't know why I continued after the thread sciatrix linked above. In a vain thought that MeFites would read links and stop being abelist and start seeing people like me as people?

I no longer comment in AskMes that are about autistic children or friends. I do my very best not to read them, because I know it is emotional self-harm to do so. The harmful and hurtful language allowed to exist around issues of neurodivergence means that you have lost the perspective of people who actually know something. In meat space, I help parents identify and correct the things that are giving their autistic kids trouble at home. I know how to find the sensorial triggers that are short circuiting brains and making it difficult to communicate or function. That knowledge transforms lives. It is never something I will share here.

Writing this comment has pretty much given me a panic attack because it has made me think back about the things I've read here. I'm very deeply sorry for ever making posts about autism here - because it meant people like sciatrix and others having to read those comments. (And now I'm caught in an edit loop considering whether I should add other uesrnames there or explain why I am not and worrying that I am going to make someone feel bad or or or. So, I'm leaving it as is, with this note about my anxiety about doing that.)
posted by stoneweaver at 3:50 PM on July 30 [36 favorites]


I always try to do my part to point out different moments of neurodivergence on AskMe. Like, in fashion questions I'm always going to do at least an aside about tactile issues, in food questions I'll bring up textural and scent issues, in human relations I drop in mentions about different methods of communication or how someone might have nonverbal days or whatever else I might suspect might be at play. I always talk about my suicidal ideation openly and without shame if it's relevant. But on the Blue I am nearly silent.

Right now I want to go screaming into the furry thread about the intersection between neurodivergence and furries and the way different people have found it so incredibly valuable as a culture and mode of expression, but I'm not going to because I am 1. conflict avoidant 2. only a little bit of a furry and I know there are plenty of members here who can speak for themselves 3. I got two hundred words into a comment and my anxiety flared up to a point that I actually noticed so I deleted and closed the tab.

I do that last one a lot on the Blue. Generally if my participation is not positive there I tend to withdraw it - and this is very much not how I am IRL, where I'm a big old negative nancy who tells it like it is because fam I am tired of wedging myself into a society for which I am not shaped, physically or mentally. I am scared about confronting casually hurtful allistics and their cohorts on the Blue for a lot of reasons, but one personal one is that I treat Metafilter as a whole like a landing pad/homepage for my daily life, and being part of conflict here has always tainted that for me to a severe degree.

My favorite thing about MF's interface is how you can see your comment in the box below as you type it. I write huge chunks of text. I usually ramble from point to point and then go through and edit - yes pretty much every comment I've ever left was originally twice as rambly. It's a block of text and then I go in and add paragraph breaks, and copypaste subjects into different spots to make external sense. I can see this all in one chunk below, so visually I know what's pleasing to me when looking at it while static but also I have my typing window... it's so nice and fits my brain shape really well. I don't know anywhere else like it.
posted by Mizu at 3:56 PM on July 30 [15 favorites]


Stoneweaver, I remember the ABA post also! I'm very sorry for how badly they went and that you had to read those comments, too. How demoralizing and disappointing. I was so glad to see the links and I thought they were great content, great framing, could've been a great and interesting discussion. It was very meaningful for me to see here, so thank you for it.

Oh, the preview below the text box is awesome, and yeah, unique to here as far as sites I go on? I do the same thing with rearranging my comment by how it looks in the preview as I edit.
posted by gaybobbie at 4:06 PM on July 30 [7 favorites]


For what it's worth, stoneweaver, I see you doing this and I appreciate it. I appreciate you being here more than I can say; I am glad to know you and I appreciate your presence and I've never been sorry to see one of the things you share, regardless of the fucked up ways that people here respond.

If for no other reason than I would probably have been trying to do it, too, for similar reasons - - and similar results, judging from the FPPs about disability I have made. I was really nervous about the most recent one, and it got almost no response and I was almost glad, do you know? Because it's performance art about accommodation and whose inconvenience is worth it and defining access itself and I was bracing myself against cheerful opinions on how the artist is a bitter cripple who just wants to make seeing people uncomfortable for his own self gratification. I went back and forth for ages about whether it was worth bothering. And I hate that this is the tradeoff I feel in this space!
posted by sciatrix at 4:11 PM on July 30 [9 favorites]


* How do you deal with the balance of moods in posts and discussions on the Blue? Especially if you are anxious or depressed? Do you want better tools to manage the mood of your MeFi information diet?

I err on the side of noping out of threads early on if they seem like they’re a bad fit for where my mood is at. I’m sure I miss some interesting things but it’s the best way for me to manage self care. I don’t immediately know what tools would improve this for me but I’d be interested in hearing if there are things that would help others! One thought: it’s fairly common for a group of my twitter friends to give each other a heads up re: “this MeFi thread you’re likely to be interested in is a shitshow in the comments, maybe approach with care” and that’s handy. (This isn’t just for mental health stuff, I also see this around classism, ableism, etc.) I can sort of imagine on-site tools to surface that sort of info here, somehow.

* Are there folks here who would prefer mods reach out to them more in private, as opposed to correcting them in public? This is not to erase sciatrix's experience, but to make space for anyone who has different needs.

I can argue this one either way. If it’s a communication about my behavior specifically, my flavor of brainweasels would really strongly rather do that in private. If it’s hashing out some more general issue of site practice, that seems better done in public.

* What do you say and do in order to take a short break from a thread or from the site in a way that feels good to you, and if you find there's anything going on that makes you feel addicted, what tools do you use to try to reduce usage?

I don’t have MeFi-specific issues here, but I do find it generally healthy for me to take a daylong internet sabbatical once a week, which includes MeFi.

* Is MetaFilter Chat something you find appealing? fun? inaccessible?

I poked my head in once or twice, but real-time chat is just never a medium that works well for me, for both social anxiety reasons and cognitive processing speed reasons. Possibly some of the social anxiety stuff could be eased if there were like, Newbies Welcome To Chat scheduled times when people could pop in and some friendly regulars would be around to help with any interface questions and make sure conversation doesn’t get too insular or whatever, but probably the real-time nature of the beast would still keep me away.

* Do you find the podcast hard to access, because it's audio? Would any of you be interested in helping crowdfund transcripts for it?


I would love this and would definitely chip in. (I also know we have some transcriptionists on the site and would suggest maybe posting it in Jobs before seeking out offsite transcriptionists.) Audio isn’t totally inaccessible for me, but it is something I need very specific circumstances to process, so if I listen to the podcast at all it’s weeks or months late. I’d read a transcript right away!
posted by Stacey at 4:12 PM on July 30 [3 favorites]


I have ADD and “attractive distraction” is a good way to describe it. On the plus side, it is easy to jump around here between startlingly different topics and it’s a nice place to rest my mind for a bit if I’m working my way through a longer-term work project that I want to take a quick break from. On the minus side, it is easy to come on here to read one thread and look up an hour later and realize “oops, I’ve been sucked into the MetaFilter!” It’s an ideal playground for my ADD mind—always burrowing down rabbit holes.

I should be more disciplined about the amount of time I spent here, but it tends to be cyclic. I’ll be on here a lot for weeks or months and then vanish for months or even years, and then back again.
posted by sallybrown at 4:22 PM on July 30 [8 favorites]


How do you deal with the balance of moods in posts and discussions on the Blue? Especially if you are anxious or depressed? Do you want better tools to manage the mood of your MeFi information diet?

The answer to the first question is "by noping out," the answer to the second is, "by noping out even faster," and the answer to the third is "yes please."

Facebook has a nice feature that lets you snooze someone for 30 days. I find it really useful when someone is acting in a way hard for me to tolerate, but I don't want to lose contact with them entirely by unfollowing or unfriending. I hit the button and pretend they don't exist for a month. It reminds me a little of killfiles back in the usenet days, although of course less permanent...which for me, is part of its usefulness, because it's not always (or even often) that someone is being bad as a reason for snoozing them, it's more a mismatch between what they're doing and what I'm capable of handling reading.

And I thought how useful something like that would have been for something like the hikikomori thread, which I noped out of (and apparently many others did too) early on.

That thread should have been deeply fascinating to me, as someone who was housebound for quite a while, and is very interested in the way being housebound, and requiring care from others, and one's sense of being or not being a mature adult in the world, and being very online, and being involved in gaming culture (at least, in my case, as it existed in the 90s), and expressing very offensive opinions as a means of deflecting a sense of worthlessness, all interact. All the more fascinating since a younger relative is also living a similar lifestyle, but in a much more MRA/incel + white supremacist fashion. This question of turning away from the world is interesting.

But it quickly became clear (and I don't know if the conversation moved in a different direction after I left) that we were content to make some points that I find exhausting to deal with, as well as personally offensive, namely the question of "is this a mentally ill person or a bad one?" As though depressed people are never shitty. As though anxious people aren't capable of expressing bad opinions. As though one thing is forgivable and the other not. And, of course, taking the words at face value, even though I know, personally and deeply, how turning away from the world can involve a humiliation that is difficult to voice, and that comes out in verbally violent ways that certainly don't sound very ill, but that rather sound angry and entitled.

What tools did I have to manage my experience of that thread? I could have, I suppose, argued the point, but god, can you imagine the effort, the time, the caveats and edits and overthinking, all to make a point that would have very little impact? Or maybe flagging and moving on, but what if the thing I find offensive isn't actually offensive; how do I know what counts as offensive speech, versus just something I find hurtful due to my particular history? Or I could have...well, left the thread.

And that's it. Three tools, none of them particularly useful. Would it have been better to have a button to click to silence certain people, even if only for the lifetime of the thread? Maybe? But then I still would've read the comments, still would've felt the consensus that hung over the topic like a dark cloud. But maybe that would've been okay, if I could have spared myself future comments? Or would the thread have been like reading some old parchment full of lacunae, hard to follow for all the holes?

When I hear people in this thread talk about their reactions to posts that touch on their own lived experience, and having to avoid those posts--posts about subjects they have first-hand knowledge about! subjects they are experts in!--it makes me very sad. Or frustrated. Or something.
posted by mittens at 4:28 PM on July 30 [13 favorites]


* Is MetaFilter Chat something you find appealing? fun? inaccessible?

I can't really keep up with a chat-room type thing, so it's inaccessible for me for the most part. But I have found it useful to observe it at times.

* Do you find the podcast hard to access, because it's audio? Would any of you be interested in helping crowdfund transcripts for it?

I would totally read transcripts of the podcasts. I never listen to them, mostly because audio takes up too much of my attention to do other things simultaneously.

And from way at the beginning of the thread: I was wondering if you and other autistic MeFites might like to talk about your experiences with IRL events ...

I've been to a few meetups -- it was a lot easier when I had other MeFite friends in the area. Right now, I'm not close enough to any MeFites in the area to feel comfortable at them, so I avoid them. The socialization is too exhausting and anxiety inducing.

And, stoneweaver, thank you for the post about ABA and the Etiquette Guide for Surviving the Workplace for Autistic People of Color post -- I just realized they were both posts you made. Thank you for those; I appreciate them. I avoided the ensuing comment thread (which sounds like the right choice in retrospect), and I'm sorry they both led to hurt and harm.
posted by The Great Big Mulp at 4:40 PM on July 30 [11 favorites]


I think my comment in that thread was really harsh though it's really more of my feeling towards men using the disorder we share as a club to hit women with as opposed to my feeling towards hikikomori in general. I *was* that for a while so I thought I could comment, but I think I worded the comment too harshly and neurotypical people in that thread didn't see that I was coming from a place of frustration where I was forced as an AFAB autist to outgrow certain anti-social behaviors that were harmful to me and others whereas men with autism are sometimes allowed to remain harmful in a way that ends up harming themselves and others (mostly women) around them. So that comment was more of an indictment of *male* entitlement rather than anything to do with mental illness, but I worded it a little harsher than I intended to. One of my stalkers, an ex-boyfriend was also on the spectrum got away with what he did for a long time by using his autism as a shield for his behavior, when I was getting dirty looks for stimming in class. So I think I let my frustration with the double standards surrounding anxiety disorders and other stuff color the force behind that comment and I apologize if it hurt anyone.
posted by Homo neanderthalensis at 4:47 PM on July 30 [25 favorites]


That hikikomori thread

Could someone please provide a link to this thread? I find it weird that so many people have referenced it without a link, like it's something that everyone knows about.
posted by Serene Empress Dork at 4:55 PM on July 30 [1 favorite]


I have severe, long term depression and some flavor of mild autism spectrum disorder, (touch issues and some other telltale signs). I appreciate the post. Good work putting it together, and I find it reassuring to hear from other Mefites who deal with these issues too.

* Do you want better tools to manage the mood of your MeFi information diet?

I would like a block feature here. I know why there isn't one. I know I could get one with scripts. I'd rather it were something the site just did because, unlike scripts, I believe that would impact site culture more meaningfully. Minus that, I can't imagine posting an FPP.

* What do you say and do in order to take a short break from a thread or from the site in a way that feels good to you, and if you find there's anything going on that makes you feel addicted, what tools do you use to try to reduce usage?

I use favorites to avoid commenting. Helps a lot, because I worry about talking too much in discussions that are important to me.

* Do you find the podcast hard to access, because it's audio? Would any of you be interested in helping crowdfund transcripts for it?

The Great Mulp covered my take on podcasts: I am unable to listen to them because they draw too much of my attention. I only ever read transcripts. (I barely ever look at linked video either.) No transcript, and I have almost certainly not RTFA.
posted by mordax at 5:07 PM on July 30 [10 favorites]


Oh, and sorry for the lack of preview: Hikkimori thread is this one, I believe.
posted by mordax at 5:08 PM on July 30 [2 favorites]


As far as accessibility - I genuinely have no idea what’s being discussed at least 90% of the time when someone uses a cutesie name for Trump. I spend the next 20 comments completely confused and distracted. There are other areas where this kind of thing pops up, but that’s the one that happens most frequently. I know that’s a culture issue not a technological one. But I watch other people comment with “who are we talking about?” And not get answered. It’s like a fucked up game of keep away on the play ground. I wish people understood they aren’t being clever, just exclusionary.
posted by stoneweaver at 5:42 PM on July 30 [12 favorites]


Yeah I’ve had moments like that in the megathreads stoneweaver, (one of the reasons I’m not super upset they’re going away.) where I just don’t know what’s going on and I know I’ll be deleted or ignored if I try to ask a clarifying question.
posted by Homo neanderthalensis at 6:16 PM on July 30 [2 favorites]


Haven't been very open about it here, but inattentive ADD with a late diagnosis and complete lack of belief/active undermining from aging parents. Mefi sometimes scratches my attention/reward balance a bit too well. I should really learn not to read/post when it's meds o'clock, though.
posted by scruss at 6:39 PM on July 30 [6 favorites]


Glad to see “sunshine and exercise” came up in that thread since that’s never been suggested before. I’ve had genetic testing done and have a genetic marker that indicates a problem with my serotonin processing in my brain. I also have social anxiety to the point of phobia, among other things. But I just need some sunshine and exercise to make my poor broken brain work right.

It is funny how this place fancies itself THE social justice discussion board (which it of course isn’t) and still has, shall we say, glaring blind spots.
posted by Ghostride The Whip at 6:49 PM on July 30 [25 favorites]


I feel like I ought to speak up here, as someone (finally) in therapy for an anxiety disorder that mainly manifests itself as social anxiety. A lot of my online life is caught in the paradox of wanting to participate, be part of a community, express myself, be seen, while simultaneously wanting to avoid actual attention from other people. Hence my usual preference for impersonal usernames, avoidance of conflict, avoidance of personal discussion of myself (this post took thought and work, and where it's messy/unclear/wordy/incomplete that's because I wanted it done so I could think about something else), and most of all lurking.

MeFi's lurker-friendly norms and topic-based structure are a lot of what makes this place feel more welcoming to me than modern participation-driven social media. The person-to-person friend/follow model doesn't work at all for me: saying anything there feels like shouting at strangers, while topic-based forums are an implicit invitation to join a conversation as you like. And if there's a thread I'd rather not deal with I can just scroll past, unlike sites where the current hot subjects spread all over your feed.

(I didn't even open that shut-in thread aside from a brief glance after all the mentions in here. Even if my "that could so easily have been me" story might have been useful to share, I knew that writing it and then having to discuss it would have made me miserable. Not to mention the implicit/explicit accidental/intentional insults that practically always come up in conversations about people with the issues I have, including on here.)

Another facet you could class under "lack of modern features" is notifications. MeFi will tell me if I've received a direct message (which is rare: again, lurker), but it thankfully doesn't have the anxiety-sparking reply or mention notifications that even many threaded forums have now.

Chat is hard, real-time is hard. My preference for re-thinking and re-editing to get a post right means that by the time I'm comfortable with a chat message the conversation has often moved on so I delete it unsent. And the fact that chat rooms usually have a list of online users (I don't know if MeFi chat does; never looked) makes me feel uncomfortable lurking there.

I have what I think might be a slightly unhealthy habit of watching favorite/like counts for things I post online, including here. On one hand it's attention (anxiety!) on the other hand it's positive attention. I'm extremely thankful that MeFi has the option to hide favorite counts, which I've toggled from time to time. Most sites wouldn't want to provide the option to hide such a major driver of user engagement.

I recently installed a Firefox extension called Impulse Blocker that I use to discourage myself from visiting websites that I visit habitually but I also know are likely to put me in an unhealthy mental place. If I ever find that MeFi as a whole starts to do that, it's two clicks to block it until I change my mind.

Something that seems to come up a lot on this site, including just the last MetaTalk post, is the appropriateness of general expressions of despair. Reading doomposts can sometimes sour my mood, but at the same time I can't at all resent the doomposters for expressing thoughts a lot like ones I have and hide. I suppose they're functionally anxiety triggers and appropriate to moderate, but they feel more like they're reminding me of processes that were already going on in my head.

Now that I feel awkward and self-absorbed for writing more words in a post about my interaction with this site than I have in probably any of my regular interactions with this site, it's time to hang this lampshade and hit post before I have second thoughts.
posted by skymt at 6:54 PM on July 30 [50 favorites]


we were content to make some points that I find exhausting to deal with

BOOTSTRAPS
posted by Freelance Demiurge at 7:37 PM on July 30 [4 favorites]


skymt, thank you. Your comment was like looking into a mirror.
posted by Orange Dinosaur Slide at 7:58 PM on July 30 [8 favorites]


Sometimes I spend a very long time thinking about comments I want to post, but between ADHD and depression, I usually don’t get around to composing them until days later (if at all), and so I just spam favorites into the thread instead.

Also, the things that everyone usually points out whenever we have another emotional labor and/or housework thread, while completely true, overlap almost perfectly with the things my own jerkbrain starts repeating if I don’t keep it constantly distracted. So that’s something I have to limit my exposure to.
posted by haltingproblemsolved at 8:12 PM on July 30 [10 favorites]


I continue to be grateful for your perspectives and for the time and thought you've put into sharing your experiences. For some of you it's been really painful and upsetting to do that reflecting and writing; I hope none of you have felt obligated to speak here, and I wish you a good and quick recovery from that distress.

(And I am seconding how much I love the instant preview just below the comment box, and the "has favorites" option in site preferences!)

And -- as far as I can tell -- neurotypical MeFites have been respectful of the ground rules in this thread, and listened. Thank you! I'll reiterate that I did say "mostly listen" and there is a little room here for neurotypical people to chime in or ask questions, but it's also fine if it's all us. :-)

I wonder what kind of on-site (or off-site) tool could help with the thing Stacey mentioned, ways to help each other get an early heads-up that a particular thread is going to likely be upsetting because of the comments that have emerged. Maybe in the short term a lightweight thing for us to do is just know more of each other, from this thread, and share our openness to being MeMailed with those kinds of heads-ups about particular kinds of messiness?

mittens, you mentioned: "Or maybe flagging and moving on, but what if the thing I find offensive isn't actually offensive; how do I know what counts as offensive speech, versus just something I find hurtful due to my particular history?" Is there something the flagging tool could provide you that would give you more confidence in using it, in that circumstance?

I'm also curious whether there's anything in the official MetaFilter documentation and guidelines that people here have found particularly refreshing, or confusing or difficult to work with. Like, I'm fine with language that suggests something is a "good option" or "your best bet", or you should "consider" doing something, but I can imagine that some autistic or anxious folks might find friction there instead of hospitality. I like how link-y the FAQ answers are, with tags and references to more info (example).

And: I don't think we've had a comment in this thread, yet, from anyone who is bipolar. So please consider this a renewed invitation to reply, if you are bipolar and have been undecided. :-)
posted by diss track able at 8:40 PM on July 30 [2 favorites]


Just as a thought, this thread was only posted today. Less than 12 hours ago, even. One of the things that has come up in the past and in this thread is that neurodiverse people have lots of reasons it may take longer to read and comment and that they are less likely to do so when the thread seems to have moved on. It may be helpful to step back and let the thread breathe. Let people in different time zones get to it and people who don’t have the spoons now and might tomorrow. I think there’s a danger in trying to push for solutions too soon or in trying to push for participation from certain groups, etc. that it will end up shutting out people who just move a little slower.

Thank you for taking the initiative and making this space, and your enthusiasm is quite frankly much needed after the last couple months.
posted by stoneweaver at 9:26 PM on July 30 [20 favorites]


I would also find an option to hide "favorited by others" on the profile helpful.
posted by aniola at 9:27 PM on July 30 [5 favorites]


You know when it is midnight and you are ready for bed, but you check metafilter right before you go to bed, and an hour passes and you think: I'm going to wake up my wife if I go to bed now, so instead you sleep on the floor?

I'm not sure if that is 'metafilter' affecting me as much as anything else I could have crammed in to that time slot.
posted by Nanukthedog at 9:56 PM on July 30


As someone with vision/sight issues (and light sensitivity as a result) I appreciate that mefi classic theme is still accessible after all this time as I personally find it more soothing for my eyes.
posted by acidnova at 10:22 PM on July 30 [15 favorites]


As someone who hasn't been diagnosed as being neurodivergent, but who most definitely is, in an undefined way, I have complicated feelings about the subject that keep me from talking about it very much since I don't seem to align well with either those who have been diagnosed or neurotypical society. I can pass easily enough when people first get to know me and suffer little difficulty in many normal situations where certain rules of interaction apply, I can even excel in some of those situations for being neurodivergent, but once people get to know me better over time I am inevitably "outed" as not being neurotypical and problems arise. Because of that, I don't want to speak for the others who have their own issues that may be greater than mine and can't speak for neurotypicals because it's not who I am. So I just don't associate myself as part of either group because my experience doesn't seem to be sufficiently representative.

That part doesn't bother me so much for myself, though I feel bad about not joining in more in some of the discussions that do tend to go so badly here since I am neither expert enough to make claims about a larger community nor have the same relationship to the issue as those who are neurotypical or neurodivergent in some important ways. My difficulties are primarily centered around physical space and the flux of social dynamics, so being online is generally a relief more than a burden as I like writing and conversation, in my own admittedly weird and exhaustive way, but only in defined environments like that Metafilter more or less provides. That doesn't mean it's always easy to communicate here as the emotional tone can be a bit overwhelming at times, but it's still much better than many "real world" situations where it is far more unbearable to deal with if not in a controlled space.

It's because I can pass and don't have much difficulty in some areas like picking up on written or verbal cues that I can't feel comfortable claiming likeness with those who have issues with those things, since I don't want to minimize that difficulty, but at the same time my own issues, which I tend to think of as being vaguely like a kind of synesthesia, where emotions and movement have physical force or weight and neurotypical people feel as if they exist in something like a field that emanates that force, makes many of the same things still very challenging, but in a slightly different way than it may be for other neurodivergent people.

It may just be, however, that my own need for some distance to maintain equilibrium is more the problem, but whatever it is, that feeling matched to my own history of difficulties keeps me from being more of a outspoken advocate for mental health issues as that history contains a lot of bitterness and frustration. I care about these issues, but I don't make a good advocate for them I fear as it bothers me to think that my perspective might be discounted for not being properly typical, which starts to feel like a betrayal of some sort, either of my own idea of self or my association with others who struggle with neurodivergence in a world not designed to suit our needs. Being torn like that sucks, frankly, but I just don't have a better answer to it all right now.

(Sorry, that's more confusing than it should be. It's a tough topic to try and get my head around since it informs so many details of my life and way of thinking, that trying to pare it all down to something manageable is really hard.)
posted by gusottertrout at 1:24 AM on July 31 [8 favorites]


Meetups that are structured are significantly easier for me than "let's meet in some bar/restaurant" where the only activity is talking to strangers (somewhere loud!). For example, NYC has the knitting/crafting group and someone proposed something about zine-making (which I'd totally go along to, despite knowing next to nothing about zines). I usually end up flaking on less structured meetups, even the ones not in bars, because it's like I can deviate from my routine or attempt to talk to strangers, but not both.

Chat feels impenetrable (though it has been years since I've even looked at it), but it also doesn't feel like chat is as core a component of the site's culture as meetups, so I feel content continuing to ignore chat.
posted by hoyland at 4:15 AM on July 31 [9 favorites]


One thing I bump up against is being misunderstood (or not understanding that someone has understood my comment and it sent them off in some other direction) and then needing to comment again. And again. Which is, to my understanding, Officially Frowned Upon. And then I worry about truly taking up too much space in threads, having my comments deleted, just being perceived as taking up too much spaces, on and on.

Or maybe flagging and moving on, but what if the thing I find offensive isn't actually offensive; how do I know what counts as offensive speech, versus just something I find hurtful due to my particular history? Or I could have...well, left the thread.

Adding "flag with note" solved a lot of this for me. There were a lot of things I didn't flag because they were surely flaggable, but I didn't know which category they belonged in. But I was reading the Hikikomori thread early on and still didn't flag anything, for reasons that are probably very relevant to this discussion, but I'm not sure what they are. (Lack of belief that flagging does anything to change the culture of the site and the thread was playing out in an utterly predictable fashion?)
posted by hoyland at 4:33 AM on July 31 [8 favorites]


sciatrix's posts are the reason I'm on a waiting list for an adult diagnosis and have pushed for more accommodations and a second opinion for one of my kids. Thank you so much for your links and posts over the years.

I highly recommend freedom as a murderously effective app/extension to control distraction, even to metafilter.
posted by dorothyisunderwood at 4:46 AM on July 31 [12 favorites]


Thanks for the gentle reminder, stoneweaver, and thanks for being so kind and empathetic in what you said and how you said it. :-) Yeah, I have asked and other people have asked a lot of questions, and there's plenty of time for people to reflect and share, especially as the fact that this thread exists percolates through the various offsite and onsite ways people find out about MetaTalk discussions they might want to participate in. (I would appreciate folks publicizing it by, for instance, linking to it in relevant Asks and in front page posts such as the American Hikikomori thread; I think it's fine, by site norms, to do that unobstrusively, but I feel like doing so MYSELF goes beyond what I feel comfortable doing with this alternate account.) And we could have another thread after this one to talk about particular questions or ideas in more depth.

I'll be a bit less thread-sitting-y now (I was so excited that people wanted to talk about this thing! But yeah I should let things breathe). But: Unless my life is completely upturned by unforeseen events, I will be reading this thread all the way till it closes in 29 days, and so if you are thinking of commenting, know you'll have at least one reader. :-)
posted by diss track able at 5:23 AM on July 31 [7 favorites]


I want to echo kanata saying that it feels like there's a very strong consensus around CBT as the only good therapy - which, one the one hand, that's fair enough when you look at the science (and when people come to AskMe to complain about therapy, "this therapy is bad, try a different one" is not an unreasonable answer!) but I feel a little like I'm saying "colloidal silver helped me!" when I say in all honesty that the best therapist I ever had was a psychodynamic therapist, and in a few instances the psychodynamic approach, specifically, was helpful in ways that CBT had not been.

A little while ago there was an AskMe about rejection sensitive dysphoria and whether it was a real thing or not. I don't want to argue about the thread or the term, but I would say that a disproportionate fear of disapproval or anger does sometimes make it hard for me to post. (Just a couple days ago I was thinking about a VERY old AskMe I posted where, I don't know if I framed the question badly or didn't include the right relevant information, or maybe it was just a different time, but I felt as if people jumped down my throat a little bit.) I'm thinking about how many people posted in the recent "state of the site" thread saying they were afraid to post, afraid to get jumped on, and - I wonder how big a thing it is for other users, or for the site as a whole, the way what looks like a fairly ordinary disagreement or correction can look like something a lot harsher inside one's head. I definitely don't want to make this into a kind of tone-policing argument or say that people with bad opinions need to be coddled more, but I do think this is kind of a new thing not connected to MetaFilter specifically, but to the rise of social media and many-to-many communication in general, where lots of us need new strategies for tolerating being corrected, misunderstood, disagreed with, without it turning into "I said a bad thing and now EVERYONE HATES ME."
posted by Jeanne at 5:52 AM on July 31 [25 favorites]


A couple of things I can note on behalf of my partner, who has bipolar disorder (and who is fine with me talking about same on MeFi where relevant): I've asked questions on his behalf a couple of times and he's really appreciated the helpfulness of the answers. A few times, with his consent, I've hooked him up off-site with people who have posted with questions re: their own bipolar diagnoses, to talk over email. Once in a while he considers getting his own account.

Ultimately though, his particular flavor of bipolar is heavy on cognitive processing problems, and he just is almost never going to be able to engage with long text-heavy fast-moving discussions. If he ever joins the site, it's likely to be almost exclusively to participate in AskMe, where there's a clearly defined scope and limit to any given discussion and most responses are relatively short. More likely I'll just keep periodically saying "hey, there's an AskMe question I think you'd know stuff about and enjoy answering" and transcribing his responses myself.

I do know that he has a lot of trouble on many websites with lots of visual clutter, a ton of different fonts, blinking and auto-playing whatever, and he's liked what he's seen of the visual simplicity of Metafilter. While not explicitly designed to help people who process information differently, it's pretty great in that regard and stops him from shutting down the way he does on a lot of websites.
posted by Stacey at 6:01 AM on July 31 [4 favorites]


I have ADHD, and sometimes "RTFA" is like saying "fly to the fucking moon".

QFT. I've tried to become better about throwing RTFA around myself, after being stung a few times. I'd respond to a long read by mentioning something related, only for someone to gleefully bring down the hammer to tell me that bit was already in TFA, in the seventh graf of the third subheading, seventeen scrolls down.
posted by DirtyOldTown at 6:20 AM on July 31 [3 favorites]


Would it be helpful to have guidelines for how mental illness is discussed? As it is, the comments are often so condemnatory. I want people to know that certain words or terms can be really, really hurtful to me when discussing mental illness. I hear a lot of the same things I used to hear when people close to me would tell me that I didn't deserve help because I didn't need it, or that my problems were my own fault and responsibility. At the same time, I don't want to stifle conversation, and I know from firsthand experience that sometimes people do fall into bad habits and refuse to learn and grow. I know mental illness is no excuse for bad or selfish behavior (someone once told me about a sign they saw in a psych ward that said "mental illness is no excuse for bad behavior," and I think about that a lot). I also know there's a point at which my own hangups are just my own hangups, and I have to accept that people don't automatically hate or judge me if they're using language that feels bad at first read. It's a tough line to tread, the issue of making accommodations vs. making excuses.

Do other people feel like it would help if we could consider appropriate vocabulary and so on? Or is it just me? I've intentionally refrained from mentioning specific words, because I don't want people to feel guilty for the language they've used, especially if I'm way off the mark with this. I'm just thinking more broadly right now. Are there existing guidelines for minimizing ableist or stigmatizing language? I'd trust those over my own feelings.
posted by shapes that haunt the dusk at 6:44 AM on July 31 [13 favorites]


I will say in favour for metafilter that without askme and the kind people there with the same mental health and trauma issues who are further down the road willing to be open and supportive and helpful I wouldn't be here.
posted by kanata at 6:57 AM on July 31 [17 favorites]


I'm thinking about how many people posted in the recent "state of the site" thread saying they were afraid to post, afraid to get jumped on, and - I wonder how big a thing it is for other users, or for the site as a whole, the way what looks like a fairly ordinary disagreement or correction can look like something a lot harsher inside one's head.

I read the responses to a poster and I guess I'll just admit it... considered self harm so I definitely needed to nope out of there. Their comment was the one about "I want to come here and look at cat photos, not be called a white supremacist."

I don't know what's up with my brain, I am DESPERATELY trying to control this reaction, but seeing someone say I'm probably a white supremacist physically hurts. So I shouldn't have been in there, I guess. I read every single post in all of those threads from the first trying to better understand though. That particular flash point was just the most painful part for some reason.
posted by OnTheLastCastle at 7:17 AM on July 31 [5 favorites]


I've asked a couple of mental health/ coping with crappy executive function questions on AskMe and got helpful responses. Having said that, I would have been pretty devastated if I'd got "why don't you just be less lazy?" type responses. I have a lot of internalized ableism that causes me to view my issues as laziness and/or self-indulgence, and it can be really upsetting when other people reinforce that painful self-conception. But that hasn't really happened for me when I ask questions on AskMe that specifically say that I have these issues and am trying to work around them. I actually see more of that on the blue, in discussions about things like cooking, how people who use Amazon are lazy, etc. I think that people, here and elsewhere, literally just forget about the existence of disability, and that fuels a lot of statements about how anyone who uses or does something must be lazy. If you remember that something like one in five people has a disability, then a lot of "what kind of lazy jerkwad person even uses this?" questions can answer themselves.
posted by ArbitraryAndCapricious at 7:34 AM on July 31 [24 favorites]


I handle conflict badly, and I get caught in circular ruminations about what I said, how I must have said it all wrong, and should just not bother other people with my thoughts and... Ultimately I have a three post rule, that if I have to clarify myself twice (making three posts total) then I am simply not going to get through and the answer is to leave the thread before I pick myself apart.

I've had some cases where I tried to explain what it feels like from inside depression and had people try to argue about it, that somehow because there is disordered thinking involved they can... I don't know... logic away that it actually can happen like that anyway. You can't fix mental illness by badgering someone on the internet.
posted by Karmakaze at 7:38 AM on July 31 [13 favorites]


(this is a friendly comment) Jeanne and anyone else who relates to rejection sensitivity in discussions, have you seen this recent thread about how even positive or neutral feedback comes off like mobbing when it's A Ton of people responding to you? That's what I brace myself for when I'm on metafilter even tho i'm not usually participating

Would it be helpful to have guidelines for how mental illness is discussed?

I think guidelines would be really helpful and make me feel more comfortable being in threads, although I share your difficulties of judging where the line should be on making accommodations vs. making excuses. (also, i notice i and maybe some of y'all have that reflexive disclaimer of 'i know mental illness doesn't excuse shitty things' every time i talk about it, ouch)

Agreed about noticing more dismissiveness about mental health and disability on the blue than the green, although I think a few people here have mentioned really bad experiences on AskMe
posted by gaybobbie at 8:14 AM on July 31


I have (undiagnosed) Asperger's, social anxiety, low key depression. I haven't read the thread yet due to work pressure, so I can't participate in the discussion, but I just want to say that there would be no place for me on the web were it not for Metafilter. Yes, it could be a better place, but for me it's already the best.
posted by hat_eater at 8:41 AM on July 31 [12 favorites]


I have experienced an unexpected gentleness here when I've posted about my own struggles with near-crippling anxiety and comorbid ADHD -- possibly because it's more gentle than the least gentle voice on my constant stream of You Suck Radio (what does Anne Lamott call it, station KFKD?).

My experience has been much worse when I've posted about my experience as a parent of a kid with mental health struggles, and I've largely given up unless I'm asking a very specific question (like "what other books about X should I read," as opposed to "what is the best way to deal with this situation?") I got tired of hearing about how ipso facto I hadn't provided enough consistency; actually it turns out my kid has several comorbid mental health issues and I couldn't have prevented this by being the Perfectly Consistent, Unyielding parent of some posters' dreams. And the idea that I broke the baby, as we say at home, is more than I can bear, so it just hasn't been successful.

That's probably an intractable humanity/world/knowledge/everything problem; there are probably kids whose bratty behavior could have been avoided with more consistent rules and less chaos. It's not a Metafilter problem and there's not some other message board that does it better. It's just the idea that my kid's behavior issues were proof positive of my crap parenting is one that my brain supplies by itself and I didn't need underscored by anyone else.
posted by chesty_a_arthur at 8:55 AM on July 31 [19 favorites]


i notice i and maybe some of y'all have that reflexive disclaimer of 'i know mental illness doesn't excuse shitty things' every time i talk about it, ouch

I feel like if I don't explicitly add that disclaimer, people will respond like I'm saying mental illness is an automatic get-out-of-jail-free card. Like, the very idea of having sympathy for someone means they've done nothing wrong. The thread can be full of really harsh condemnation, but I say "that sounds like mental illness" and it's this total lack of nuance, team "they're bad people" vs team "they can't help it."

The tipping point for me in that hikikomori thread was when someone started listing things as evidence of terrible entitlement, including "the feeling like rejection is unendurable." Which, OK, nobody owes you anything, but did no one consider that anyone in the thread might struggle with rejection? I have felt, in the past, like rejection was unendurable. What a good way of describing it! When you bring up something specific and call it entitlement, it's hard for me not to feel like you'd see my own problems with rejection as simple entitlement. It really hurts. It felt to me like everyone was so caught up in justifiable anger over the bad aspects of these guys, that everything they did or thought could be treated as yet more evidence of them being bad people, including stuff that maybe some of us could actually relate to. But it also felt like, oh, maybe they're right, I'm wrong, and I really am a bad person; maybe I'm just reacting badly to this because it's calling me out.

Like I said, I can't expect everyone to just cater to my needs. I can't just use my own hurt feelings as a baseline for what is and isn't OK. I just wish people were more aware, because I keep seeing threads where I have that same feeling, where at best I feel hurt knowing that so many people look down on something I can personally relate to; and at worst I start questioning what that says about me as a person (god, the absolute worst are threads about suicide). I try to remember that it's just a website and I don't have to listen, but you know, kind of hard not to sometimes.

Anyway, sorry to keep rambling on in this thread. I just wanted to put that out there.
posted by shapes that haunt the dusk at 9:05 AM on July 31 [26 favorites]


shapes that haunt the dusk, you're getting at something that's pretty much why I left metafilter a month ago, and came up in the "How many bones would you break to get laid" incel thread. Any attempt to expose my self/identity/etc in a honest way was pretty quickly shut down with "Be better at being hot under capitalist society", and it's an interaction I've had several times.

I don't know what it is, or how to describe it to other people - but my self-worth is pretty directly impacted by what people say about groups I'm a member of! I can tell myself that it's not all men, or that it's just a reminder to do better, but Metafilter is better than any other place in putting me into a headspace where I can't ever be good enough to fully participate in society.
posted by sagc at 9:20 AM on July 31 [9 favorites]


I hear a lot of the same things I used to hear when people close to me would tell me that I didn't deserve help because I didn't need it, or that my problems were my own fault and responsibility

I've gotten surprisingly far on my 'Just-world conservative' M/H bingo card this week. Now I just need someone to condescendingly suggest uncritical acceptance of their brand of traditional organized religion as the obvious panacea people aren't talking about.
posted by Freelance Demiurge at 9:39 AM on July 31 [6 favorites]


For some reason I don't feel very comfortable sharing too much in a thread made by an anon account (even if it's all going on the internet anyway), but about my MeFi experience: I've always felt the site is pretty judge-y about things that escape the usual problems highly-educated white people experience. So, discussing depression is fine but only a specific sanitized variation of it. ADHD is usually unproblematic. And... that's it, it's all downhill from there.
posted by Memo at 9:40 AM on July 31 [18 favorites]


(this is an anon account as I don't want potential employers finding this, among other reasons.)

Two of my strongest anxieties are miscommunication (either being misunderstood or misunderstanding someone else, which also extends to misunderstanding conversational contexts, what's okay to say when) and getting into trouble (an absolute terror on many fronts). (mittens' first comment in this thread)

Yup, that's me. I have an anxiety disorder, ADHD, OCD and C-PTSD though I never identified as disabled. The anxieties mittens described above are a major reason why I mostly just lurk here; I am terrified of saying the wrong thing and the repercussions of that. I have a general perception of what's an acceptable opinion on a given topic and often my opinions differ (to varying degrees); I get extremely non-confrontational in these situations so I just end up not commenting. Going against the consensus on MeFi on a given topic just feels dangerous and often I perceive it as not acceptable. Perceived or real rejections fucking terrify me. All this and the fact that in a lot of topics, the cost of entry feels too high; I feel like I'm not educated enough on a given topic, I don't know enough etc.

Of course, this is not exclusive to MeFi but those feels are particularly strong here.

Again, those are my perceptions, I'm not saying it's necessarily the objective reality. I guess my point is that my brain is a shitty place to be oftentimes.

And yeah, I have a therapist with whom I work on this shit, but as people who have been in therapy know, these things take a long time.

This is a very long way of +1-ing mittens' first comment in this thread; I just wanted to share in case others feels this way (and at least one person somewhat does?)

---

I also want to reference this, somewhat out of context:
Metafilter is better than any other place in putting me into a headspace where I can't ever be good enough to fully participate in society.

I feel this to a certain degree too, many times. To put it bluntly, and please take this the right way and in context of what I've written in the previous paragraphs about perception vs reality etc.: I feel like I'm never woke enough (I'm sorry I really tried to find a better way of saying this but couldn't) for MetaFilter. Which pushes me further to just lurk. I'm also not American, and this is a pretty damn American space, which complicates things.
posted by bee jam but sketched at 9:48 AM on July 31 [15 favorites]


and like... I like Metafilter. I really do. It's a great and unique corner of the internet. But for me it's so hard to participate.
posted by bee jam but sketched at 9:57 AM on July 31 [4 favorites]


Metafilter wants to hear from parents of autistic kids, but is actively hostile when someone with autism presents any information that might be challenging.
posted by PinkMoose at 10:15 AM on July 31 [16 favorites]


Also, doubling what stoneweaver is saying!
posted by PinkMoose at 10:24 AM on July 31 [3 favorites]


It is also very classist and stereotypical coastal when it comes to giving advice. Not everyone has therapy available to them and not everyone can afford them even with sliding scales. And there's a bit of a pushback if you go against the main view of mental illness being anything but genetic. There's no space I find to discuss your lived experience. It might seem like it but the blowback can be severe and the rejection high especially if you already have an illness that heightens that feeling.

Sometimes I worry about the people who have left due to all the problems recently. It hurts to be rejected by what you consider a home. People find support here and then when driven away for being other are cut off. And also agree it's sad that people who have direct knowledge of things end up leaving threads to the people who it is merely a thought experience.
posted by kanata at 10:26 AM on July 31 [21 favorites]


I'm multiple (MPD/DID/whatever) and have PTSD.

At this point in my life I consider the first a neurodivergence, obviously - enough of one that I feel like sometimes my experience of our (very ordinary) life is so different that I should stop messing about in the AskMe human relations threads even if they are my favourites. (Probably because we have had to confront so many times and still do frequently, what does it mean to be ethical operators when we are not a single consciousness.) But not a disability any more than a large family is.

PTSD is shitty.

I was actually heartened at the reasonably recent LB Lee thread since it's one of the first I can remember where people haven't entered the thread to show their "knowledge" that MPD/DID/etc. can't exist. Which is understandable given wider society, but it shows a lack of understanding of the research.

how does your neurodivergence affect your participation in and use of MetaFilter?

Sometimes I'll/we'll comment more than once in a thread, and even though we're sensitive to holding a united front if we have just one account (as we do here), I can see that it's partly other people in my head either wanting to get their own thoughts in or wanting to have expressed things differently. Because of the culture here being more "make one thoughtful comment rather than three," we spend some time and effort in trying to minimize or avoid that.

Sometimes that means we come in pretty late to threads, because we've had to toss for who's going to front for it.

We really like the format of things being topic-based, since that lets people go into their own specific interests without us having to keep up on some vast general flow of information. This is one reason we never got into the Megathreads. Keeping the discussion relevant and focused is very restful for us that way.

Sometimes I think because we too have internalized that multiplicity is "sick" we forget to remember that different neurodivergences or mental health issues work differently than ours, and so we can sometimes be like 'find the joy in life and buck up' just because that's worked well for us (after years of therapy and other things.) Because at this point we're more a group of non-suffering people than a suffering person, if that makes sense. So it's good to have this thread to reflect on.

How could MetaFiter -- technologically and socially -- better accommodate your neurodivergence?

Socially, there have been sometimes in threads that touch on MPD/DID a lot of armchair experts who think that because they've encountered Multiple Tumblr they know what multiples are (or rather, are not), and that's annoying. I joke sometimes that now that people are quite openly sociopathic, multiplicity is the last hidden mental illness. (This is joke, not a fact.) It would be nice if people who are like "Wow I'm fascinated by multiples!" or "let me expound on my armchair expertise" would remember that multiples are real people and we are among you. However, I do this myself sometimes in different contexts, so I know why it happens. Maybe just reminding each other would be good.

Other than that though it's a community we value. After cortex's State of the Site post, which when I look it over as a professional makes me worry a lot for the future format the site will be able to maintain, I've been thinking that MetaFilter is actually pretty meaningful to me, and I think that speaks highly of the members, the staff, and the way that much of what was great about Original Internet has been cultivated.
posted by warriorqueen at 10:30 AM on July 31 [21 favorites]


I come at this from a lot of different angles. I have ADHD and cycle through bouts of clinical depression every few years (one's ramping up right now, yeehaw...). I have a daughter with fairly serious GAD/social anxiety and who struggles with eating disorders. My son had bipolar disorder. Both my children attempted suicide; one succeeded. My brother is on both the autistic and schizotypic spectra to a disabling degree.

ADHD means I spend more time skimming and less time putting my thoughts together into coherent comments. It's hard to get through long threads such as this one, and I skipped ahead about halfway into this one just to make sure I got a comment in before it's too late. Similarly, I tend to tune out on comments that are more than about 300 words. That doesn't mean anyone should change their posting style, but it's something to be aware of. The social connections I've made here over the years have been helpful with depression. I try to give back. I don't feel like anything I've listed in the first paragraph makes me more aligned with or part of a particular sub-community on those bases. Being able to take what I can use and leave the rest is one of my superpowers.

I think there is an inherent tension between "people with X" and people in close association with "people with X." It's valuable to be in dialog with people on either side of that divide, even if it requires leaning into discomfort at times. I've learned so much listening to people on the spectrum, people with anxiety, people with a history of eating disorders, and it's made me a better parent/sister as a result. By the same token, that does not invalidate my experiences or struggles from the other side of those labels.
posted by drlith at 11:17 AM on July 31 [9 favorites]


There's been a request for input from bipolar people and even though I don't want to do this and I'm not too sure what the point of my input will be, I have bipolar I with anxiety and I'm currently fluttering around baseline but I'm on a lot of drugs to keep me here so I hesitate to say I'm stable but I am good enough to have started reading this post last night and finish it today (although I did do a lot of skimming over some content). I have been popping in and out of MeFi for decades and when I joined I felt a sense of community in many ways. I joined right after Matt's state of the site in 2012 and the site felt particularly welcoming around that time. There was a #julybywomen campaign that got me to post a few things and also transformed the site into a very rich resource. People were coaching others to do a first post and the range and volume of content was incredible. So things like that have made the site special for me. But then I will go weeks without reading the site because my brain can't handle reading anything at all. But when I do read, I rarely comment other than to say yay or thanks for the great post because I don't trust myself not to say something stupid.

I loved my first round of Secret Quonsar but I messed up the second year and couldn't send anything because I was hospitalized for a psychotic break and when I got home and opened what I was going to send, it was an embarrassing mess of garbage that I'm relieved I never sent. So I was banned the next year, understandably, but now I am terrified to commit to anything that big again. I also owe some people some cookies from 2015. I used to feel horrible and guilty for not being a good member but I am still cleaning up from that episode and I think I'm okay with it now. But I'm still very sorry!

My main involvement with the site currently is through the MeFi Card Club and I had to take a break from that for a couple of months because I couldn't write properly, I was shaking and transposing letters among other things, but I started back up last month and I've also cut back on the number of cards I send to make it less overwhelming. Sometimes I can't believe I am unable to address a card. But the point I want to make is that I am extremely grateful for Fig and the card club members, and for mochapickle and needlegrrl for creating and managing other fun ways for people on the site to interact through the mail. I would also like to use this space to apologize again for not being able to help out at the end of the Valentine's swap 2019, I still feel terrible about it.

I live in a small rural town in WA about 2 1/2 hours from Portland. I would like to thank all the Portland people who have encouraged me to come to meet-ups! I do imagine going to a meet-up but then all the logistics of making it happen bog me down. But there are lots of changes going on in my life right now and obstacles to getting to Portland are falling away, so maybe one day I will actually do it.

My oh my, a wall of text. This is what I was afraid of. But I will end with a few random comments... Overall, my bipolar limits my use of the site because of my fear of being inappropriate and also from posting anxiety, I love being on the site as it's the easiest for me to read and navigate (classic theme xoxo), I don't have any particular complaints or suggestions, thank you to everyone who has ever sent me snail mail, and good luck to the site as a whole. May posts like this help it become the best it can be!
posted by danabanana at 11:41 AM on July 31 [28 favorites]


* Are there folks here who would prefer mods reach out to them more in private, as opposed to correcting them in public?
I am not a fan of the mod practice of speaking directly to moderated users in-thread and by name; I think the function of warning both the particular user and other readers against the problematic behavior can be accomplished without that kind of public shaming
* What do you say and do in order to take a short break from a thread or from the site in a way that feels good to you, and if you find there's anything going on that makes you feel addicted, what tools do you use to try to reduce usage?
I've had some success with the Stayfocusd browser extension when I feel like my metafilter/general internet usage is interfering with my work/rest of my life
* Is MetaFilter Chat something you find appealing? fun? inaccessible?
Not at all appealing. I have checked chat periodically going back several years and it always seems both super dead and cliquey. I use Twitterfilter a lot (by which I mean, I follow tons of Mefites/Ex-mefites on Twitter) and that's been a good supplement to in-filter metafilter.
* Do you find the podcast hard to access, because it's audio? Would any of you be interested in helping crowdfund transcripts for it?
Didn't the podcast used to be transcribed? I don't do podcasts for the reasons others have cited, but I like the podcast thread as a way to catch some interesting posts/comments from the previous while.
posted by drlith at 11:52 AM on July 31 [6 favorites]


I think that in general mefi has a lot of pretty bad issues with ableism, not just for neurodivergent people but for anyone not fully abled in general, to an extent that it often gives me the same feeling of fucking helpless despair as race and gender issues have done. It's exhausting. I'm exhausted. I CAN care about more than one thing at once but why do I keep HAVING to.
posted by poffin boffin at 12:29 PM on July 31 [25 favorites]


Like a lot of people here, I've been a little hesitant to speak up in this thread. Self-diagnosed ADHD (although I'm finally getting the spoons together to start contacting Professional People for actual screening), actually diagnosed anxiety and disassociation disorder that manifests itself in self-destructive addictive behavior (for which therapy and 12-step have been welcome panaceas).

Metafilter feels like home. It's a sometimes problematic home, to be sure, but I feel more comfortable talking about my issues out in 'public' here than I did in a private group I created on Facebook. I've made a few amazing friends here, and the first time I went out, alone, in public to meet a group of complete strangers for a thing that was not related to the LARP I play was due to an IRL posting about local trivia.

I had to nope out of the political megathreads kinda early because of spoon drain, but I've otherwise found MeFi to be a place for me to learn how to be better - a better listener, a better empathizer, a better /ME/. I wouldn't be who I am without this place.
posted by hanov3r at 12:45 PM on July 31 [12 favorites]


I've had some time to think and rewrite so I'll try to answer the functionality and culture questions here from my experience. This is the kind of thing I'd usually write up and then delete because it's too long. I've chopped it down a bunch already but it's still too much and I'm sorry about that, but this seems to be the place for it so here goes:

I am hesitant to label myself here because I don't want to offend anyone or have people dig up examples of why what I'm saying can't be true, which has happened to me here. I'll just say that I have had professionals put names on how my brain works and I identify with a lot of what people have to say when we talk about these topics. One example I'll give: when I was a kid I was told we don't talk about our imaginary friends. I was a good little conformist so I stopped talking about them. It took me until my mid 30s and work related to recent sobriety to learn that I was wrong in thinking that everybody had imaginary friends that showed up often but they just didn't talk about them. I still see my imaginary friends, one especially, often though I now know most others don't and I have more tools. That's a hard thing to talk about in general but it's especially hard when people don't believe me. I'm sure people aren't believing me now, but there's not much I can do about that.

A big reason it's hard for me to speak on many topics here is that I'm a middle-aged, middle-class, very WASPy American man. It's time for me and people like me to get out of the way and listen. I understand, appreciate, and agree with that. So I am afraid of opening my mouth and saying something very stupid due to my background and privilege. Now I'm afraid this paragraph sounds like I'm saying I'm unfairly silenced but honestly, that's not what I'm trying to say here. I have offended people here by saying too much. I seem to have a sharing valve that's just ON/OFF (as if this comment didn't make that clear) and when I've over-done it in the past it has caused problems, up to and including a user who I respect greatly leaving the site for a while. I don't think it was entirely me, but there was a long comment that I read before it was deleted that made it clear I was at least part of the problem though it didn't call me out by name. I feel terrible about that every time I see the username pop up and I want to apologize but I feel I shouldn't reopen the issue.

I find MetaFilter to be one of the most technically usable places on the internet for me. This is mostly due to the fast loading, text only, non-paginated, non-threaded structure. I've tried to read places like Reddit or Slashdot when I come across a link to them, and I just can't figure out how to follow the comments and replies that makes sense to me. When some comments are hidden and/or move up and down the page over time I get lost quickly. MeFi avoids that and that makes it work for me. I also appreciate the level of customization available with font types and sizes, color schemes, etc. I use the classic plain theme. The black text on a white background without much else on the screen is so much easier for me to read than just about anywhere else on the internet. I'm able to read and comprehend MeFi because it's 'quiet' if that makes any sense. I have used a few userscripts in the past that helped a bit but don't find them necessary most of the time. HowlsOfOutrage displays who favorited a comment or post by hovering over the favorites area and I found that useful when I cared more about favorites because I could see them without jumping to a new page or tab and losing my place.

I enjoy some of the in-jokes but more often than not I don't understand them. I don't keep up on current memes and such so there are often references made that I don't understand. I can usually look them up but that only works if I notice them as a thing to be looked up. When someone writes a sentence that makes complete sense as written I'm going to take it as written most of the time. That makes sarcasm very difficult, which is not specific to MeFi but it's common here. As mentioned above, when a person is referred to by a cute nickname I will miss it almost every time. It's still hard for me to believe a majority of people can track that Leafy McGee is supposed to refer to Scott Baio (my own bad, made up example) when used with no other context in a thread. I also really appreciate the live preview of comments. I re-write many times to get things to look and sound how I'd like them and the preview helps a lot with that.

Something that I see here often (as mentioned above) is not believing the lived experiences of members when it comes to certain areas and neurodiversity is definitely one of those. I have watched this improve for other subjects on MeFi over time and it's wonderful to see the shift so I know it's possible. Here's an example if it helps: Often when I meet people I'm asked "how tall are you?" so I say 6'7" and about a third of the time people respond with a genuine "no you’re not!" There is no reason to not believe me when I say that with a straight face. Also don't ask if you don't want the answer. That's what it feels like here when people give examples related to neurodiversity from their life only to be told "no you're not!" except it's much more hurtful because height isn't as consequential. That's the same attitude I see in threads about addiction which is why I pretty much steer clear of those these days. I know that's only slightly related to the topic and I don't intend to make this about me or addiction, but it's possibly an example others can see if they can't see it in neurodiversity discussions.

* Is MetaFilter Chat something you find appealing? fun? inaccessible?
I cannot keep up with real-time chat so I don't really go into chat. I've popped in once or twice and it's not for me. I don't really think I'm missing anything except for once in a while when chat is suggested as the place to have certain conversations. I don't feel I *need* to have those conversations generally so it's not a big deal.

* Do you find the podcast hard to access, because it's audio? Would any of you be interested in helping crowdfund transcripts for it?
I have a hard time with certain audio and a lot of video when I have to give it 100% of my attention or I will not follow it so I can see how others might have similar issues with the podcast. I wonder what is meant by crowdfunding transcripts. Does that mean paying a transcription company to do it? I wonder if those of us who listen regularly and usually on day 1 or 2 after release could split them up and do the transcription instead. I realize that might be too much to manage but they are fairly infrequent. I would definitely read the transcripts if they existed and I would like to help make them happen.

I'm sorry for the long rambling comment. Thank you all for the comments here and in all of the threads on MeFi. This is still my favorite place on the internet and I still read most posts to the Blue and most of the comments in those posts. I'm a better person for being here and in general I feel welcome here. Many of my issues with participation are my own and I'm ok with that. Also a HUGE thank you goes out to everybody for not jumping into this thread to contradict other users when they're sharing things that can be very difficult to share and are often ignored, handwaved away, or disbelieved.
posted by Clinging to the Wreckage at 1:38 PM on July 31 [15 favorites]


without you warriorqueen I would have been lost trying to understand my DID and be overwhelmed with shame. your words helped me so much. I would say us but we feel like we can't say that here for those very same attitudes about MPD. We still feel we need to hide us when talking as we assume everyone will now think we are lying and making things up for attention. You all helped us see we aren't. You and others surrounding trauma on askme have helped me so much.

I think cause askme has been so vital for me learning about mental health that makes the ableism and comments hurt more on the blue. I wish everyone got that feeling of support on this site.
posted by kanata at 1:49 PM on July 31 [22 favorites]


I am neuro-atypical. I am not sure why, but I don't really care for the term *neurodivergent.*

I have diagnosed and treated conditions (depression and seasonal affective disorder) as well as some that I'm too old to give a shit about having a formal diagnosis for, nor do I treat them. I *know* I am somewhere on the spectrum, and I know I have some form of ADD, but here's the thing: *I like it.* At least now.

I like that I can't focus for long periods of time. I like that I float from task to task. I like that I make weird connections and that I have a different way of looking at things.

I think this is an adaptive trait (at least for me). I gravitated to a field where I get rewarded for being able to move from problem to problem quickly and effectively.

Growing up it sucked. I don't like doing things I *enjoy* for more than like 20 minutes, so classes were/are literally hell for me. And I self-medicated the fuck out of my depression for decades. I honestly though everyone felt that way and had no idea that I was outside the norm.
posted by cjorgensen at 1:55 PM on July 31 [9 favorites]


From a community/social standpoint (and speaking as someone who primarily engages with AskMe) one of my greatest frustrations with Mefi's treatment of mental health is rampant armchair diagnosis by the flagrantly unqualified, followed closely by a tendency to attribute particular motivations or states of mind to others with little or no evidence.

It's one thing to say something like "I or my close family member have such-and-such condition, this sounds very similar, you might want to talk to a professional and/or do some research". It's another thing entirely to accuse someone of having a mental illness or personality disorder based on a second- or third-hand account. I use the word "accuse" deliberately—many of these armchair diagnoses come with a lot of negative judgement and devaluation attached. I have a question I am trying to formulate for AskMe about a longtime mental health and interpersonal relations challenge, and I am bracing myself for a mix of of thoughtful and helpful answers, "have you heard of meditation and CBT", and the inevitable few comments telling me that actually I am really a horrible abusive person who basically does not deserve supportive relationships until I fix my horribleness. And even though I don't believe that about myself I am still not looking forward to reading it.

Also. "Have you tried getting outside and exercising?". OMG, STFU.
* Do you find the podcast hard to access, because it's audio? Would any of you be interested in helping crowdfund transcripts for it?
Never listened to it partly because I can't concentrate on audio like that very well.
posted by 4rtemis at 3:38 PM on July 31 [21 favorites]


* Do you find the podcast hard to access, because it's audio? Would any of you be interested in helping crowdfund transcripts for it?

I try to listen to the podcast every now and then. I wish the audio interface on the site were better - I'd like to rewind to catch something and the embedded audio player doesn't seem to have that feature. I know I can download the mp3 but I like having it right there and all I can do is pause.

There used to be transcripts, right? I remember transcribing bits and pieces. So there was a system in place for people to just volunteer their time and use the system. It was fun. I would transcribe again!
posted by danabanana at 3:54 PM on July 31


You're awesome kanata. :)

I sometimes fall into ableism myself, which comes from the period of time I was more into open activism and there was a lot of emphasis on behaving certain ways to prove...whatever...a kind of ridiculous approach but very of its time. That's one of the things I appreciate about discussion on this site and focusing our talk through fairly narrow topics - it gives me a chance to start anew each time and to get to listen to everyone when they share their own thoughts.
posted by warriorqueen at 4:04 PM on July 31 [4 favorites]


I have ADHD and have been part of a number of long-term medical and genetic studies. It’s not a mood disorder, it’s brain chemistry. I take medication, just as I would if I had diabetes or a thyroid problem or 1000 other medical issues that are helped greatly by prescribed drugs.
Lists, reminders, coping mechanisms are all swell, but they don’t change the real problem. I am very tired of answers on the Green that suggest anything but seeing a neurologist and getting an assessment.
posted by Ideefixe at 5:47 PM on July 31 [7 favorites]


I spent the day assembling dance floor, so I had a lot of time to think about how mad I was about that thread. Got to my desk, intending to post in it about how mad I was, got to the end of it and found a link to this one. Given that I was already pretty mad about MetaFilter in general, I'm still really mad, but I guess I won't flounce today. I'll post links instead.

Also, perhaps, it's helping that I'm watching the Thought Slime video about dealing with anxiety, depression, and mental illness. It's a pretty frank discussion, so give it a miss if you're out of spoons/hit points.
posted by ob1quixote at 6:18 PM on July 31 [5 favorites]


I don't have the headspace for a lengthy comment but as a survivor of trauma who fits some diagnostic labels, call out culture is often traumatic. Pile-ons are traumatic.

I have had more feelings of being bullied on Metafilter than just about any other forum, Reddit included.

I think it always catches me off guard because it is such a heavily moderated space. This implies, for me, that it is a safe space.

But this place has reduced me to tears and gotten way under my skin on multiple occasions. I don't know why I keep coming back except I assume most of that is me, or people trying to help me be more woke which I do want to be, but the delivery is often unkind and intense and thank you for asking this. I often feel shamed here.
posted by crunchy potato at 7:30 PM on July 31 [20 favorites]


I would transcribe again!

FYI, I brought this up on the podcast today and I hope we can get this going again. Transcriptions of the podcast are a bare-minimum accessibility thing that should happen.
posted by jessamyn (retired) at 7:41 PM on July 31 [11 favorites]


I find metafilter's community difficult to deal with as a neurodivergent person. It is easier for me to ignore the poorly spelled attacks riddled with expletives one encounters on the wider internet than it is for me to brush off the carefully worded viciousness I encounter here. And there are the callous, arrogant, infuriating assumptions to side step as well. You do not have to be internet detectives looking for the fatal character flaws hidden between someone's words. I have revealed very personal and painful experiences here and someone invariably dive bombs into the thread to declare that "a-ha! it must be YOUR fault! You must have done [THIS]." Do you know how cruel that is? How damaging it can be? I once responded to someone with whom I shared a specific FOO pattern of abuse with, and was accused of being an abuser myself. By someone with absolutely no knowledge of the topic. they popped into the Ask and saw a chance to draw blood and score a few points.

And god forbid you are someone who isn't an excellent written communicator, or is scattered, or nervous, or not great at reading the room. You will be ripped apart and spat out as you scramble to clarify yourself to someone who actually isn't interested in you or what you have to say - they've smelled blood and tens of favorites. Or if you're obviously struggling and mentally ill, but not in the right way. You're a male shut-in. You have the temerity to get angry when you're belittled or not listened to (after a lifetime of harm because no one will listen to you). Your medicine makes you sick so you don't want to take it. You're poor and "go to therapy" isn't an option.

Oh and then there are things like that thread full of people defending someone who made child molestation jokes and was briefly fired. That was a great read for those of us who are survivors. Good job, Metafilter! Thanks for the flashbacks.
posted by Feminazgul at 8:07 PM on July 31 [19 favorites]


And don't tell neurodivergent people to "grow up" or "act like an adult." You might as well be telling someone to "act normal." It's shitty.
posted by Feminazgul at 8:12 PM on July 31 [9 favorites]


I could help with transcription, I imagine.
posted by OnTheLastCastle at 8:15 PM on July 31


Wow, ob1quixote, thanks so much for linking that video. That hit in a lot of places I needed right now.
posted by gaybobbie at 8:18 PM on July 31 [2 favorites]


I just spent ten minutes arguing with my otherwise very nice psychiatrist that no, I was perfectly fine calling myself autistic and that I didn't think it was medicalising a problem but actually helpful. Yes, I was very capable and could manage socially and had lots of social skills but it was nice to know they were exhausting through something inherent and not because I wasn't trying hard enough or flawed. He said "well couldn't you just say you're an introvert?" and I thought, how is that an acceptable label when autistic isn't? Why is it such a Bad Word? But then he deals with a huge range of cases, and I am comparatively highly functional and verbal.

That's why I think having people like Anthony Hopkins say he is autistic meant so bloody much. The wider the number and variety of people who come up and say, yes, we have autism, and by the way, just because you CAN do something, doesn't mean you should. Ditto for DID and ADHD and all the lovely beautiful neurodiversity. It's really nice to have a world where a starting assumption in some places can be "well, how do you think?" not "why am I the only one".
posted by dorothyisunderwood at 8:29 PM on July 31 [20 favorites]


jessamyn: Transcriptions of the podcast are a bare-minimum accessibility thing that should happen.

There are a number of reasonably inexpensive transcription options out there for an hour or so of audio - relying on volunteers to do it is catch-as-catch can, which I'd guess is why it stopped happening.

Metafilter should just pony up for an outside transcription or...post it in MeFi Jobs and have someone do it for like $100. Someone who's a reasonably proficient typist could knock it down in around two hours. Or just offer a fair hourly rate if it proves to take a bit longer. That would demonstrate an actual commitment to the bare minimum.

I doubt making that bare-minimum financial commitment will break the MeFi bank.
posted by mandolin conspiracy at 8:34 PM on July 31 [10 favorites]


Posting to show my face, but I don't have anything to add to the conversation beyond appreciation to people who've shared their experiences, tbh. It's a me-problem rather than a MeFi-problem, but being a compartmentaliser and having over-exposed myself through mentioning various personal stuff here previously I find it hard to talk about other private stuff now. This far and no further! (Imagine how well my IRL personal relationships work if you want a good laugh).

Theoretically, I suppose having the option of deleting old comments/posts might seem like something that might help, but we all know what happens on the internet stays on the internet one way or another. Wouldn't want anything like that from MeFi regardless.
posted by I'm always feeling, Blue at 9:18 PM on July 31 [5 favorites]


I have a lot of anxiety, but then, this is pretty common. I never thought of myself as neurodivergent. But maybe I can add something. As a person with a lot of anxiety, I have a hard time replying directly to anyone and thus don’t participate in MetaFilter and MetaTalk as much as I’d like to. I’m afraid I’m going to inadvertently offend someone. I do this in real life, too. I do feel comfortable on AskMe, just leaving an answer. And speaking of AskMe, often a poster asks a question to which the obvious answer is Therapy. But I think we tend to say “therapist” so often that posters now phrase their questions with caveats like, “ can’t afford therapy right now.” There’s so much value in just validating the person’s experience and I wish we could do that more and say, “This is a good question for your therapist” less.
posted by Knowyournuts at 9:46 PM on July 31 [10 favorites]


I thought that "neurodiverse"/"neurodivergence" is an umbrella that covers _all_ the different ways our brains work

I find it deeply ironic that this thread was started by someone who misunderstood what 'neurodiversity' means.

As a non-US person, I find using this site sometimes useful, and sometimes frustrating due to the subset of people who seem to be unaware that experiences, cultures and myriad assumptions outside their own little bubble even exist. The world is a very big place.

My experience as a neurodiverse person is very similar. It's as if I live in a different country to NTs, and although in some ways we speak the same language, in others we don't.

Some of the frustration comes from the seemingly complete inability of NTs to understand that people whose minds work differently to theirs even exist, and that this isn't wrong, it's just different. In a thread some time ago, I said this:

"Trying to work out ways to deal with neurodiverse people by thinking about what will motivate neurotypical people is doomed to failure, but for some reason, people keep trying to do it."

And some observations about therapy:

CBT was mentioned upthread. CBT works well for some people, but it's not the only, or necessarily the best option for neurodiverse people. It's sometimes said that "therapy doesn't work" or that neurodiverse conditions are "untreatable". This is at best a simplification of the truth. Yes, neurologically different people have differences in the hardware of the brain, and you can't change that. However therapy can be useful in helping people to understand and deal with why NTs are the way they are, and to make the best use of the talents their neurology has given them.

Therapy can also be useful to help unlearn all the cruel bullshit that gets landed on us for being different.

What is true is that a therapist without experience in the particular neurology of their client will usually be useless.
posted by HiroProtagonist at 10:14 PM on July 31 [7 favorites]


Late to the party - but that's common. I was once castigated (oh maybe not that bad)for taking an apparently common phrase literally (something like "hating listening to someone eat". Who knew that was a thing? I'm terrible at being able to tell what's a euphemism or whatever, and I don't expect to be told in advance, but don't give me shit for not knowing.

I can never predict when the metatalk "tell me about your interesting [thing] is going to turn up in my timezone. (Australian).

I no longer answer my phone or listen to phone messages, I don't watch videos on the net without subtitles, so any link that requires listening, I'm just not going to waste spoons. So sadly, I've never heard the podcast.

That said, metafilter is a daily habit for me. Sometimes interesting, sometimes not, but usually polite (personal attacks which can occur anywhere else on the internet doesn't happen to me here).

Adhd, autism, anxiety.
posted by b33j at 11:29 PM on July 31 [1 favorite]


The thing that felt uncomfortable about the hikikomari thread that I wanted to bring up, but also dreaded bringing up, is the well meaning caregiver myopia. I remember it playing a part in the ABA thread as well.

As a caretaker, there will always be disconnects between what you are capable of providing, and what the person actually needs. That’s the whole thing about the Good Enough Mother. It doesn’t make you a bad person.

But having the hubris to refuse to interrogate those disconnects you might experience, and using that to shut down conversation about those unmet needs, because there’s an anxiety you might have to do more. It’s infuriating. Especially because the answer might not be that we need more but that we need something different.

And that’s not to say that I have the answer to getting all the hikikomari/NEETs out of their parents house and into the world. But we can’t get those answers without putting some emphasis on them, rather than the ways they are ‘burdening’ those around them.

We understand so little when it comes to our brains. We should be able to hold the idea that we are doing the best we could, and it could easily prove to be the wrong thing. And that doesn’t make us bad people unless we are actively resisting progress.

CPTSD/dissociative disorder
posted by politikitty at 1:02 AM on August 1 [13 favorites]


Metafilter should just pony up for an outside transcription or...post it in MeFi Jobs and have someone do it for like $100. Someone who's a reasonably proficient typist could knock it down in around two hours. Or just offer a fair hourly rate if it proves to take a bit longer. That would demonstrate an actual commitment to the bare minimum.

I am looking for a side gig and I would cheerfully do this, for the record. (I type over 100 wpm and I've done transcription before.)
posted by EmpressCallipygos at 2:23 AM on August 1 [5 favorites]


I sometimes wish the behavioural norms more prevalent in Askme would show up in the blue (and the grey, good lord).

This is not to say that AskMe doesn't have it's own troubles, especially with questions that are poorly worded, leave gaps out, concern parenting, or come from demographics we might associate with privilege or anyone outside North America...

However, there is a hesitance to directly argue with others (I know it's "against the rules", but I'm sure mods would agree it does happen) the arguments that make it through are blunted, non-directional, not vitriolic and have a "one and done" approach - which I really like. People in ask.me understand that you have one chance to express your disagreement, it must be succinct, polite, relevant, and focused on your experience not another community member. And you are not wading back in to take a crack at someone or a new argument. I love it. It works well, there is still a diversity of opinion, but trench warfare is non existent.

People generally assume better faith and there's more of a spirit of generosity, and more care taken with comments.

If your anxiety or depression or other troubles are making MetaTalk or MetaFilter too intense, hanging on AskMe can be a form of respite (caveat: this is not saying it's perfect, indeed when you are feeling anxious and people respond in AskMe with dickery, it feels all the more hurtful cause you are not prepared for it).
posted by smoke at 3:36 AM on August 1 [20 favorites]


I have nothing of worth to say other than I am here.
(autism, depression, anxiety, avpd)
posted by talitha_kumi at 3:40 AM on August 1 [13 favorites]


Late as usual. I've been lurking since 2001 or 2002, but on the Blue I feel too inarticulate or I just nod along with the people who have said what I might have wanted to say, or seethe at the ones I don't feel able to go up against. I feel more able to keep up with the Green since it doesn't involve me opening another bunch of browser tabs of interesting stuff to read that I can't get to, but I'll only comment if I am very sure of my response, which is rare, and always a source of anxiety. My tendency to blurt out too much is something that keeps me from participating more. And the run-on sentences; I just did that again.

And yet Metafilter has been a home for me, even if you all don't know me. I thank the mods often; by the time I get to contentious posts, a lot of what would be painful has likely been deleted.

(ADHD, lifelong dysthymia/other depression and anxiety with bouts of major depression, some form of c-PTSD, pretty well medicated)

oh and I'd read a podcast transcription; listening is a skill I am poor at and takes a lot of concentration, but I also like hearing real people's voices on the podcast. I just cannot keep up.
posted by wens at 4:29 AM on August 1 [5 favorites]


Didn't realize we are supposed to share our labels. History of ADHD. GAD, possibly OSDD-1B but the doc doesn't like to diagnose, CPTSD.
posted by crunchy potato at 4:39 AM on August 1


Didn't realize we are supposed to share our labels.

Only if you want to. :-) It's totally fine not to.
posted by diss track able at 4:46 AM on August 1 [4 favorites]


I'm severally dyslexic, so I enjoyed the edit window and OpenDyslexi font support when they debuted. thumbs up. but that's the small potatoes

As I develop deeper into my post concussive seizure disorder, or atonic seizure + repetitive neurological damage salad I have going on. Memory loss, mild cognitive impairment and more I'd rather not boast about (maybe don't let your kids play extreme sports or football) there are some gripes and things I think about more these days.

I drift more and more away from both metatalk and metafilter not so much due to tech interface but social reasons... these are both parts of the site where it's most ok to really argue and arguing in text is arduous for me. OR more accurately writing something that I know others MIGHT argue with is arduous for me. Because I leave out words, or whole sentences, or whole ideas and I can't quickly see that they're missing. This is embarrassing as I'd like to say what I mean and be coherent, but also infuriating because of the people who seem incapable of just fucking letting someone say something weird. Like what is that? I don't know what motivates the "I must argue with everyone and everything like a BS plaintiff on judge judy" people but it makes risking contribution to these sections of the site especially stressful.

Like my omissions/mistakes may make me wrong, but if I'm obviously wrong, and you noticed... probably everyone else did and thus you don't need to come in with your artisan "YA WRONG" sign and hang it in the next comment. This is compounded by my slowness, this comment will probably be pushing 40 mins by the time I post it.

So if gotcha police could cool it that would be fun.

I comment in ask me and fan fare. There the pressures of time and wider explicit and implicit acceptance that people are gonna say their piece and others are just gonna be ok with that is much more tolerable for me.

A tech based request I would make and will forever make is that the edit window be allow open longer and allow more significant edits. I know all the reasons this is a bad idea, it's harder to Mod, and some snidely whiplash could use it to dunk on people by changing the facts of an exchange post facto. Sure. Maybe I think to highly of people but I don't imagine that as widespread or common here; but as someone who has to edit EVERY comment (surely shit one as well.) it would be hugely valuable to me personally to leave behind coherent or even timely messages that were not signposts of my cognitive struggles. Or fodder for the above "gotcha police"

But to close on a positive, this is one of the only places online I can deal with strangers AT ALL, so that feels pretty special.
posted by French Fry at 4:52 AM on August 1 [10 favorites]


as a follow up I spent 48 minutes on the above comment. reading and reading and editing pre post. posted and used the edit window twice to fill in missing words, change "an"s to "and"s and the window timed out on my third dip in. Now I have gems like "surely shit one" instead of "surely this one" hanging out in the back half of comment. Ironically(or just sadly?) in a section about How I predicted the need to edit the comment. (also I edited this comment and I'm mentioning that fact, flaunting the rules.. COME AT ME MODS YOU'RE NOT MY REAL COMPUTER DAD)
posted by French Fry at 5:03 AM on August 1 [16 favorites]


ALSO acronyms, I imagine they are handy, but unless they are truly ubiquitous like "LOL" I'm not going to remember them even if I know the phrase they are an acronym of. I'm just constantly googling, and making assumptions that not every post is derailing into urban dictionary sex acts.
posted by French Fry at 5:14 AM on August 1 [4 favorites]


Personally, I am on my third round of CBT and have just about given it up as useless for me. My cognition isn't the problem, first, and second, the lack of structure is... if allowed, I will cheerfully sidestep issues I'm dealing with and dive into an abstraction. I process so much of my life cognitively, and it isn't sufficient to actually fix underlying associations and learned behaviors. Worse, because I'm so articulate about cognitive processes, I am fairly sure therapists assume I'm better at certain skills than I actually am, which leads to an awful sense of failure for me.

I have felt untherapizable. I spend a lot of money and time on therapy, and I don't know that CBT in particular is all that helpful when distorted cognitive processes aren't actually your primary problem. Especially because it places so much emphasis on the client as the source of mental and emotional dysregulation, and a big part of what I actually need is reassurance and support for not being able to rely on my cognitive skills for everything I'm dealing with.

EMDR is more helpful. Group, where I can observe and watch how other people handle similar things and have my own shit validated and held, has been more helpful. But CBT is--man. It's not a damn panacea, and for someone like me it's frustratingly hard to get value out of. I'm really tired of feeling like an unknowable, unfixable, unpredictable person in a therapeutic context.
posted by sciatrix at 5:36 AM on August 1 [25 favorites]


And as someone whose home is the Blue, I desperately want to have a conversation about that where there are people who have relevant experience I can make a connection with, and I know those people are here. But having to be so tense about having to, essentially, try to moderate the ableism out of conversations without any structural support is exhausting, especially when I'm trying to delve into topics I'm already vulnerable about... like the places where it feels like my cognitive processes are melting because I'm spending so much time dissociated, for example, or balancing making my needs known with the stigma (real stigma, dammit) of having them.
posted by sciatrix at 5:43 AM on August 1 [9 favorites]


(By the way, one thing people have been talking about is flagging when it's hard to express/decide _why_ something ought to get particular attention from the moderators. I use the "noise/derail/other" option a lot because I figure "other" covers, well, APPROXIMATELY EVERYTHING. And the mods haven't told me to stop doing that, so I figure it's okay. And sometimes I flag something, and then later that comment is gone. I think if the people of MetaFilter were flagging too much, making too many false positives for the moderators to deal with, or not giving them enough info to understand why comments need attention, they would tell us that. But I don't think I've heard that from them, so I figure it's fine to err on the side of flagging a little "too much". Of course I welcome a mod reply here in case I'm wrong, or to confirm, or something else. :-)

This is in a way a followup to the #4 item in the "Following up on last month’s discussions: medium and long-term work" MeTa, "Documenting the specifics of moderation practice", and the ensuing discussion of flagging guidance.)
posted by diss track able at 6:36 AM on August 1 [4 favorites]


The thing about therapy is yes, when it works it is very good and god knows I wouldn’t be here without my psychiatrists and counselors...BUT finding one is a bear. I wrote a “how do I find a therapist” post for my blog and it goes on for pages and pages because first you have to determine if you can even afford to go and then figure out if you’d rather pay out of pocket or work with your insurance, then find one that takes your insurance and/or you can afford to see, then they have to be taking new patients/clients, and that’s not getting into all the different methods, the question of whether you want medication or not (and some psychiatrists JUST do meds so you have to start all over if you want a talk therapist). And that’s assuming there are any in your area because even in a fairly large city it can be hard to find practitioners with openings. I’ve tried to help friends that live in smaller towns or more rural areas find one and it’s like “well there’s one psychiatrist near you and he’s two hours away and not taking new patients...”

And we’re not even into the really messy but key stuff like personal fit because you’re essentially auditioning for a New Best Friend because you’re trusting them with the intimate details of your life.

So “get therapy!” Can be just as unhelpful as “sunshine and exercise! Yoga! Weed! Essential oils!”
posted by Ghostride The Whip at 6:38 AM on August 1 [11 favorites]


On the topic of ADD/ADHD, they didn't even really do any tests. Did most people who were diagnosed get intense diagnostics or more testing?

Here's what happened to me: My therapist thought I had it, my doctor talked to me about my life and experience and agreed. My dad read up on it and we had the most heartwarming conversation about how he saw that in himself and wish he'd seen it in me before and gotten us both treated. Then he randomly died but still, I'm doing well, dad. Adderall calms. me. down. so much I can nap on it, and I can drink 300-600mg of caffeine and feel nothing but slightly more calm. So that seems like a good tell.
posted by OnTheLastCastle at 6:47 AM on August 1 [13 favorites]


I get the impulse to not be too critical here, because I love this place too, but this is breaking my heart. It's hard for me to focus on structural accommodations when this site is so unsafe about disability. I'm tempted to ask for a second dedicated space to talk about disability and ableism here, because it feels like that isn't what was wanted in the original thread and... that's okay, we can talk about that too, but for me the problem isn't the design of the site or ability to process the podcast without transcripts (no, for the record) but whether or not the conversations in the community make room for disability and variations in access.

Do we need a different space to have that conversation? diss track able, I see you (I think) trying to steer this conversation towards positive things that we can do about this, right now, to improve things. I appreciate that work. But I'm also--I find myself wanting to repeat things over and over for emphasis, and I think that's usually a sign I don't feel heard. That's a me problem, but I think here it's saying "I just... I am so tired about that here, I want to connect with other people who struggle with these things too, and everyone who is here has at least a little experience, and I want to talk about why we can't have that elsewhere."

The thing is, "disability" is kind of like "person of color" in that it incorporates a wide number of communities and experiences, some of which conflict with one another. My experience with "neurodiverse" is that it refers to a specific community under that umbrella, which is folks on the autism/adhd/related stuff like SPD umbrella. Broader mental illness is also disability, and it may not be appropriate to call people with other kinds of mental disability "neurotypical," which is why we see words like "allistic" getting used today. But it feels strange and a little odd to me seeing a space that feels set aside to this subset of disability of the mind and this subset only, in part because not all of the disabilities of the mind are farthest away from all of the disabilities of the body. For example, neuro diversity movements owe a lot of cultural and activist tradition to movements by and for d/Deaf people, and so communities for those disabilities, and the outlooks and opinions of those communities, often look very similar. By contrast, when I see communities or advocates coming from a place of dealing primarily with mood disorders like depression and anxiety, those communities often come from a similar tradition as people who deal with chronic pain.

And of course disability rejects being partitioned into the body and the mind. Both of those "disabilities of the body" can and often do have profound connections to the brain, and many of the challenges of those "disabilities of the body" are shared with their respective community partners, far more than are shared with one another.

Also, unlike "person of color," "disability" has to be claimed; we are often not born with it, and some of the marginalization disabled people experience is actually pressure not to identify as disabled at all. For some people, disability is temporary, and the utility of actively identifying as disabled and learning about disability advocacy might not be worth it. (For example, someone with a temporary mobility disability might have recently broken a leg.) At the same time, "temporary" is often difficult to interpret for disabilities, especially disabilities of the mind, and there is definitely pressure on people with any kind of disability to compensate well beyond their capabilities rather than impose on nondisabled people to accommodate them. So labeling such a thread like that is likely to need disclaimers to the effect of defining disability inclusively in order to encourage participation from people who really do have a stake... which I think was the intent of defining neuro diversity here broadly in the first place. (And that's not specific to here, incidentally; there is a movement to include more and more permanent brain disabilities under neurodiversity, especially if they fit a societal model of disability much better than a medical model.)
posted by sciatrix at 6:50 AM on August 1 [22 favorites]


and the need to perform your story in such a way that your trauma is acceptable and listened to

I have struggled in a few different milieus, not just metafilter, with how much to disclose: it starts to feel like a mode of self-harm, at a certain point, to volunteer things from your own experience among a group of people who you can expect will react with indifference at best.

Can't read this whole thread (ADHD) but this is absolutely true for me, and I don't like it. I notice it most as a woman talking about sexual assault, or as a person talking about poverty. (metafilter really really really doesn't understand being poor, in my opinion). It also come up discussing other things, like my mood disorders. I don't think it's unique to metafilter, but it is a problem here. In this very thread there's sort of an implied expectance to list out your diagnoses or place on the spectrum.
posted by FirstMateKate at 6:53 AM on August 1 [18 favorites]


I'm glad people are sharing diagnoses and whatnot, but I feel like it's worth repeating that of course two people with the same diagnosis can have pretty different experiences of it. The categories are specific enough that they're really descriptive of the shit you might both have to deal with, but still broad enough that your lives could be totally different. I think sometimes tension arises (on this site and elsewhere) because it can be easy to be like "well, I have depression, but I still manage to work," with the uncomfortable implications that follow. Or, like, my dad when I was a kid being like "I have ADD too, you just need a Palm Pilot like me" (lol no). Regardless of the intention, whether it is to support someone or criticize them, I think it's important that we all keep in mind how everyone has to bear their particular crosses uniquely. What works for one person might not work for someone else. And I mean, I forget that sometimes.

That said, I do feel like intention matters here, at least for me. I'll get annoyed if someone is like "you know what helped my anxiety? Getting out in the sunshine!" But that's really different than saying "ugh, well at least I recognized that it was my responsibility to do something about it! It's not as hard as you're letting yourself think it is!" I'm not trying to make people feel bad here, and I'm not trying to say I'm above anything -- I've snapped at people who came to me for a shoulder to cry on and been like "well I got through this, so stop whining!" But the point is, that can be hurtful (I later apologized to those friends -- the irony being that they're now coping way better than me).

Obviously the problem isn't limited to people who share diagnoses. I had a major depressive episode last year (really mild compared to this year's), and when I went to a university psychiatrist, he was like "you know, studies show that getting out and smiling actually does help, just try it." Of course it didn't work, but was that because I didn't smile enough, or was it just, you know, a major depressive episode? And none of this has anything on people who really cannot relate to your lived experience, who are like "depression? I've been really sad before, and what always cheers me up is videos of puppies" (I feel like I never truly lived until I found myself sobbing at every puppy I saw, because of how worried I was that they wouldn't be safe forever and would eventually have to face real pain). Or, god, the people who are like "OCD? You know you're not going to die from touching something, ha ha."

The disclaimer, as always, is that I also know you have to push yourself a little. Staying in the comfort zone (if that's really what you want to call it) can make things way worse in the long run. Lived it, know it. Sometimes I really would benefit from something, and I just don't want to hear it. I know that I and others have sometimes leaned back on a diagnosis to get away with bad behavior or bad attitudes. I know my own personal issues don't absolve me of responsibility to myself, to other people, or to society. I know how much it hurts to feel like people are minimizing the hard work you've had to put in, or to say that it doesn't matter, or isn't necessary. Sometimes when I think someone who shares a diagnosis with me is being mean about it, I know it's because they've had a hard time too, and it's not fair to expect that they never get frustrated or angry. And finally, I know that I don't have all the answers, and that regardless of my own problems, I can only begin to imagine what other people have had to deal with. It's all so messy.

This has gotten really long, and I'm worried I'm going to sound too condescending or full of myself. I kind of want to just delete everything because I kind of feel like an asshole being like "ooh, did you know that this is how it is, people? The problems that you've dealt with too? Listen to what this white guy has to say!" But I don't know how else to put it, and I figure there's something worth reading in there, if not for the people in this thread than for the people in the back reading along. I hope?
posted by shapes that haunt the dusk at 6:55 AM on August 1 [20 favorites]


Aaaan sciatrix said it better 5 minutes before me. Such is life.
posted by shapes that haunt the dusk at 6:56 AM on August 1 [2 favorites]


Agreed, sciatrix, I’d been avoiding talking about physical disability since we were focused on mental but the body is a system and they all hook together. Using myself as an example: the meds I take for my dad brains inhibit my body’s ability to stay cool. Many psychiatric drugs as well as things like antipsychotics and anti-seizure drugs have similar side effects as well as photosensitivity to the sun. You can become basically “allergic” to sunlight. (By the way if you’re on anti-depressants, antipsychotics, or anti-seizure drugs, look into this since you need to drink more water and stay cooler than you did before you started them and lots of doctors don’t know about these side effects). So suggesting something like sunlight and exercise as a panacea can be potentially harmful to a person on those medications. In my case I get maybe 10-15 minutes outside in the heat before I overheat and have to sit down and cool off for a while. But I have a friend who will physically break out in an allergic-looking rash if she gets much sunlight. Which obviously doesn’t do wonders for one’s mental health.
posted by Ghostride The Whip at 7:02 AM on August 1 [8 favorites]


I think if the people of MetaFilter were flagging too much, making too many false positives for the moderators to deal with, or not giving them enough info to understand why comments need attention, they would tell us that. But I don't think I've heard that from them, so I figure it's fine to err on the side of flagging a little "too much". Of course I welcome a mod reply here in case I'm wrong, or to confirm, or something else. :-)

You're right on here, diss track able. Flagging early and often is helpful. At no point in MeFi history has "too much flagging" been a serious problem, we really appreciate it. Just picking a flag reason if they all seem equally so-so is fine, to put the flag through. Flagging as "flag with note..." and typing/tapping in a few words is also okay as a way to work around that indecision, and giving us a quick "thing x is a problem" heads up that way can help us knock down problem comments and dynamics faster. So, yeah, go for it! On the rare, rare occasions that we have someone individually going overboard with flagging, we just toss them a nice gentle note letting 'em know what tweak will help.
posted by cortex (staff) at 7:15 AM on August 1 [10 favorites]


No, shapes, I think we're saying subtly different things with different focuses and your contribution is an important aspect too.

I liked it and have gone to chew on it.
posted by sciatrix at 7:17 AM on August 1 [11 favorites]


sciatrix -- first off, thank you for your comment.

I wanted to be a bit terse here partly for time reasons, and partly to try to be better than I have been at being legible for people who can't read long comments. I think I failed :( -- concision is hard!

Two things really started me thinking about the need for a conversation about technological and social structures making MeFi accessible & inaccessible: (1) the way anxiety and depression specifically have come up a lot, in discussions of the megathread and of "fun" versus "sad" posts on the blue, and (2) intersectionality in policy decisions & implementation around tone policing in the People of Color discussions. (I am a person of color.) I didn't want to drive everyone to just argue about those things (and certainly didn't want to frame it as "neuroatypicals versus people of color") so I tried to make it more open-ended.

I haven't meant to try to steer so much toward _positive_ things we can _do right now_, but I see how that's part of how I've come across. I wanted to talk about accessibility and our experiences _really broadly_, including technological stuff and social stuff. So, for instance, I think that talking about structural stuff includes people saying that we are really scared of being misunderstood and jumped on, or can't remember tons of acronyms, or find AskMe and FanFare norms more accessible than norms on the blue, or talking about how and why we lurk, and so on.

I know there's a hunger for a conversation that's more about ableism in conversations on the site, one that's broadly about LOTS of kinds of disability, and including neuroatypical people who do not consider themselves disabled, maybe more similar to the current People of Color-only MetaTalk thread in its broad scope. And I know that's not how I've framed this thread. But I don't want to make people with limited spoons try to track two different potentially fast-moving threads. And I really do want people to feel the solidarity-building and experience-sharing here that we can feel.

So I do think it would be great for you to start framing a second dedicated thread about disability and ableism (and I could help you draft it via the wiki). But for now I think I'd just like for it to be possible for the different kinds of conversations that are going to happen in this thread to coexist. I do hear you even if the sub-topics I'm responding to aren't about ableism in conversations. The people who want to talk about what we're happy about, what's working for us, what's difficult for us, what is heartbreaking for us, on different dimensions (tech, governance, emotion, -isms, our bodies, labels, conversations that go wrong or right, and more) can all coexist. Would that be ok? Even if you see me personally following up more on the subtopics that aren't the ones that you and many others are talking about?

Finally, thank you all so much for being gentle with my missteps. I am such a novice at disability activism and self-advocating and so on. :\
posted by diss track able at 7:42 AM on August 1 [4 favorites]


I deliberately did not list my acronyms or diagnoses - not because I am personally uncomfortable with them but because I felt it would not be relevant to my comment and its place in this discussion, and I also didn't want to contribute to pressuring others to share their own labels if they didn't want to.

For me neurodiversity is all about the second part of that word: diversity. It's not a wholly positive or negative thing, right? Diversity comes with challenges, accommodating differences is inherently difficult! But it also comes with great opportunity and beyond that it's just more interesting. Looking at shapes' and sciatrix's comments and how they say two different but complimentary things - that's interesting, and valuable, and perhaps a little difficult in a way that most online interaction is simply not.

I get bored easily and am fascinated by all the different ways people think and live and experience. On MF I have a chance to get little glimpses into these things without my curiosity being perceived as judgement or ignorance. I would love to get more chances like this with more people. I wish that neurodivergent people of all types felt comfortable sharing parts of themselves here. Like (the wise, the admirable, the stanable) sciatrix, I want to connect with all of you.

One of my oldest online friendships is with someone who is figuring out their DID, is autistic, has ptsd and is physically disabled to boot - I think that they would be a perfect fit for metafilter, except that literally everything about them is going to be something the site does "poorly", and that's not even touching their cultural labels. We talk about our unusual minds and bodies all the time with each other; we're very different and it's very interesting! But I can't have that kind of conversation here. I either won't have done enough research, I'll stumble onto terminology that's outmoded, I won't have enough shared experiences to appear legitimate, etc. And as for my friend, they would find the serious tone and formal affect of the writing here to be a huge issue, assuming they were having a good reading day to begin with. Meanwhile I find those things to be really great; I do love a good joke or clever wordplay but mostly I want clear and direct language, especially about intangible concepts.

Count me as another person who considers mental disability and neurodivergence to be two different areas. I agree that they are often intertwined and often look similar on the outside. But it's a nuanced conversation to have that - for me - boils down to existing in a society for one type of mind can often be cumulatively harmful to other types, but we literally have no other option. There is no Crone Island for us, either - and would Crone Island be sensory friendly?? So I welcome anybody who feels like they fit under the wide umbrella here, because we're all struggling with the same desires for inclusion and respect.
posted by Mizu at 7:44 AM on August 1 [13 favorites]


Yes, of course that would be okay. And thank you for listening, and even more importantly, thank you for trying really hard. I can see that effort, even when I am being pretty frustrated and impatient. I'll swing back on the thread later after it's had some time to breathe and maybe look into drafting something like that for the future. I think that the collaborative drafting approaches that I think have come out of the Megathreads (?) are a brilliant idea for MeTas of this nature, and I'm interested to see where that new approach leads us... later, when there's time to process this conversation.

I'm a little distracted right now, but I want to point out that this is a place where needs/wants are conflicting a little bit with respect to both disability and neurodiversity. (My preferences are usually to move fast-fast-fast and be super-sure I'm understood and to throw communication down on the page at high volume, and keeping that in check takes cognitive effort and time... but then again, so does processing all those words I'm slapping down, and those needs aren't always compatible for everyone.)

I want to point out that conflicting access demands and requests are a thing that is pretty common, especially in neurodiversity circles, and especially in disability circles (no matter how big the area of overlap we're talking is). Proposing compromises like you've done here where possible, in alignment with the context of the moment and the specific needs of the people and situation, is really central to this kind of activism and advocacy--and that includes requests to separate out communities and focuses in time and space to allow people to self-select into groups.

So this comment is a long-winded way of saying: I think you are doing a good job here, diss track able, and I did not want to make you feel like you were failing or like you don't know enough to host this conversation. And I think your request is part of a long tradition of trying to come up with workable solutions, and also that Metafilter's highly context-specific moderation style is actually really neatly aligned with long traditions of accessibility advocacy for disabled people.
posted by sciatrix at 8:09 AM on August 1 [12 favorites]


I'd love to have more in depth talks about disability physical and mental but I don't trust this place as being safe to do so. It only in the last year that I've felt brave enough to be critical of this place. My PTSD prevents me from doing so. But after last year with metoo I've run out of fucks. But still in my mind is to not do things that can cause upset in other people.

I would love to talk about experiences with ableism within the system that you are supposed to get help from. Or how having one illness will sometimes make dr's disbelieve all your others. The interplay of the body and mind.

I don't know how to say the next part without upsetting anyone so I'm really scared of saying it but if we had those convos mentioned by others I hope people would be open to those of us who don't have a university degree. I struggle with this site by having barely graduated highschool and having reading and focusing issues that are partly physical disability and mental. I have to have a lot of spoons to follow a lot of threads here as I have to up my levels of writing. So I guess that's one thing metafilter does bad. It feels like a mountain to climb to sound like you fit in here and to prevent being hurt by other people picking it apart for fun. Sorry if that hurt anyone. I am triggering myself for even saying that and that makes me not know if it's a me thing or other people experience it. Gaslighting from mental health providers makes me believe I'm just not trying enough.
posted by kanata at 8:32 AM on August 1 [29 favorites]


Kanata, I have two terminal degrees and still feel like I have to walk on eggshells, "prove" myself, and feel criticized almost every time I post. Like you I have felt it was my own shame and trauma history. It helps to know others have a similar experience cuz like... Maybe it's not me for once. Maybe my experience is valid. Maybe yours is too.

And nthing your comment about people not listening if they hear certain letters associated with you. Nthing the damage from armchair diagnosis. Nthing the blind spots that occur in a community that says it strives for cultural competence but that shows up in bullying sorts of behaviors.
posted by crunchy potato at 8:59 AM on August 1 [12 favorites]


we're all struggling with the same desires for inclusion and respect.

Quoted for truth.

I think the hard thing about discussion on the Blue is that it's always centered around other people's content, so it feels arm's length - it wouldn't be good framing for the site for me to do a round up of "my fav DID links" for example. What do you all think? Maybe we should take on a project of posting things we've found for our various states of being and seeing how the discussion goes. Edited to add: Posting in the correct way, not blog-style.

Longer term, I'm writing an e-book on multiplicity that I can post to Projects when it's fit for consumption, if that helps any; maybe it will get voted up to the blue at that point! It was inspired by that spate of AskMe questions around the time of the LB Lee post.
posted by warriorqueen at 9:07 AM on August 1 [8 favorites]


I hesitate to comment here, since I'm not sure if I'm neurodivergent enough, but since anxiety is specifically mentioned in the post title...

My primary form of anxiety is health anxiety usually accompanied by some somatization (so I get to experience the symptoms of the things that I have!) This makes AskMe an interesting experience, because so many answers about health questions boil down to "trust your gut" or "you know your own body." And I've had the opposite experience - my gut lies to me. But I can't drop in to every health-related Ask and be like "hey, maybe you have anxiety," so I mostly skip them unless the person specifically mentions anxiety.

I also found the American Hikikimori thread really exhausting, along with the Emotional Gold Diggers Thread from May. I think that lately, Metafilter has been especially bad at discussing mental health issues among men. I really, really hesitate to say this, because I know the site (and the world) has a bad history of centering male perspectives. And I know that there used to be a history of dudes charging into every thread about women's experiences to wring their hands about "what about the men??" But it also seems like something has happened, possibly as a long-term effect from the famed Emotional Labor thread, where the community seems unable to talk about problems that affect men in any terms other than the impact of those problems on the women in their lives. Maybe this is just fair enough, and a necessary balancing of the scales. But as a guy whose partner has seen him through some difficult stuff, it's sometimes hard to read.
posted by Ragged Richard at 9:07 AM on August 1 [23 favorites]


I will say as a woman who is skeptical of requests from men to take care of them, and who is frustrated by disproportionate requests on women for caretaking...

...I do not think we are great at making space for men to talk about caretaking and needing care and emotional development and learning to take part in vulnerability. (It's also a problem for discussions explicitly about queer men.) Part of the problem with tending to make men unmarked defaults is that when there is a problem that does disproportionately affect men, where men would otherwise benefit from a specifically marked space to focus on themselves, many of us who are not men automatically figure that we're included in the unmarked default because we've gotten used to reading "male" as "default." So it can be difficult to focus on men in that respect.

Of course this is also exacerbated by expectations on women to do the caretaking and emotional labor etc, as well as expectations (internalized and externalized) that men not comment on or admit to feeling emotions besides anger. For better or worse, that means that men tend to be less likely to try to create these spaces. But I do think that MeFi would benefit, as a whole, from certain discussions or spaces being explicitly marked as places to center men. Everyone needs to be centered sometimes, and people whose experiences are "default" wind up never, ever being properly centered--and part of dismantling "default" privileged experiences is to take them, mark them, and treat them like subsets of humanity that deserve focus.

Also, I think it would be good practice for men to look after themselves and make connections that don't rely on women for support and monitoring. But YMMV there.
posted by sciatrix at 9:20 AM on August 1 [28 favorites]


Thanks for that sciatrix - that's a really thoughtful response to something I was struggling a little to articulate.

Also, I think it would be good practice for men to look after themselves and make connections that don't rely on women for support and monitoring. But YMMV there.

Totally agree! But sometimes you have a panic attack at 2am, and there's really only one person there (if you're lucky enough to have that one) to help out.
posted by Ragged Richard at 9:25 AM on August 1 [4 favorites]


Yeah, i skipped right by both the Hikikimori thread, for it having the double whammy of cultural difference and neurodiversity issues at its core, and that Emotional Gold Diggers thread since the historical societal imbalance makes specific relationship discussion all but impossible to integrate. The lack of discussion about some topics from anything but the normative social dominant position over time gives cause for some rebalance by having those traditionally left out have opportunity to air their grievances, frustrations and anger. That's fair, but there are areas that redress can't cover, some of which are/were also hidden under the same structure of domination, as in some of the invisible ways power dynamics work in the home that don't fit the usual models of "masculinity" and "femininity" as expected by patriarchy. It'll take time and work to dig through all the needed issues, especially as societal problems are still so much in play.

:( -- concision is hard!

It is! One of the things I find most comforting about Metafilter is that I'm not forced into set character limits or have demands of concision placed on what I say. I just can't write or think that way. I'm almost certain I've had more posts of three or more paragraphs than I've had of one or two. (Well, faux paragraphs really since I as much break them up for how they look on the screen as for subject continuity.) I may be an editors nightmare, and thus someone a lot of readers may prefer to skip or glaze over in what I say, but it feels necessary for me to be able to say things in ways somewhat approximating how I think about them without just trying to write inadequate feeling summary answers.

It doesn't always help, as it sometimes just leads to people ignoring part of the lengthy replies for some snippet that isn't quite in context, but it nonetheless feels more freeing to me as it is such a struggle to condense my thoughts to more soundbite sized morsels. In the same way it's sometimes a struggle to really engage with short summary like replies for so often being just a core emotional response or felt overall reaction to an article or idea rather than something with more in depth reasoning behind it. I accept that's how many people choose to engage with the site, so I just try to work around it as best I can and let go of the posts that my own type of engagement doesn't seem to fit. How successful that might be seen as being to others I can't say, but it hasn't made me leave the site yet, so I guess that's something.
posted by gusottertrout at 9:34 AM on August 1 [6 favorites]


I was going to read the whole thread before commenting (you know, so I could avoid the Inevitable And Horrible Repercussions Of Saying The Wrong Thing, thanks anxious brain), but it’s moving too fast so here I am. I’m also recovering from a migraine right now so shouldn’t really be looking at a screen in the first place.

I love MeFi and I really value the conversations I’ve been (or lurked) in about neurodivergence, the ones between neurodivergent people. A lot of the people who’ve commented here are people I admire and am thankful to for their contributions on the topic. I have learned a lot of social skills from ten years on the green, seriously. As an ADHD-having, autistic person, I also greatly prefer the site’s clean and calm look.

That said, I can also get quite anxious here, especially from reading the big state-of-site-culture threads, where everyone gets the wrong end of what others are saying and people start doomsaying about the lack of future of the site. I am better now than I used to be at avoiding anxiety triggers. Actually, for the last few years I’ve been largely avoiding reading the news; I find that more than enough knowledge of it seeps in anyway. As such, the megathreads were never of interest to me unless I found myself doing what a friend calls neg-stimming with them, which I guess is a form of self harm.

All this to say that, in general, I curate my MeFi experience a lot these days. I try to go into smaller threads and leave positive comments, though often I’m too self-conscious to write more substantive ones and I wish I weren’t. This does make a difference in my mood and how I feel about MeFi... of course, when I land in a thread like this one and see people talking about their bad experiences, I wonder if I’m really part of the same community. (That’s definitely an effect of my brain and/or trauma from growing up neurodivergent. It’s hard to believe I really belong in a community.)

I never listen to the podcast, but I would read the hell out of a transcript. It’s honestly never occurred to me to go into the Chat, and if I did, I doubt I would be able to post much. I might compulsively read everything, though, which would take up a lot of time! When I first joined here, I read every single post and all their comments (up to the point I happened to look at the thread). That was not super productive.

I very much prefer public communication over private, although I suppose if the mods were telling me I’d done something wrong, private would be better. I just might not reply in such a case. I once got a MeMail from someone asking for advice—advice I had offered in an answer to their AskMe question—and was so anxious about replying that I took a year’s break from the site. Wow, that sounds like an overreaction when I put it that way.
posted by daisyk at 9:35 AM on August 1 [9 favorites]


people saying that we are really scared of being misunderstood and jumped on

Just want to put out there there's also the flip side that mania or hypomania can make it really difficult to dial things back or even realize that you're being way too aggressive and intense (or even just weird). There's a level of analytical, cool detachment that's part of the "house style" here that I like in general, but that I think can be difficult or maybe even impossible to adhere to completely/consistently if you're dealing with something like hypomania, let alone mania.

The hardest part, to me, is that I don't even necessarily know where my head is at until AFTER I start seeing the usual signs. Which means that I've probably already said or done plenty of obnoxious, weird, impulsive stuff before I realize what's happening and consciously start compensating for it. Apologies all around. lol.

I am 100% in favor of sensitivity and gentleness, but I think that includes giving some leeway for lots of modes of expression and even allowing for some measure of wildness, intensity, and (even) conflict in communication and relationships. That's part and parcel of accessibility, too.

That's another reason I like when things aren't time-sensitive. Walking away is OK here, which I love. Waiting until you can handle things in the way that you'd like to handle them and THEN joining or rejoining the conversation is feasible. (Non-threaded comments are a large part of what makes that possible, I think, which is another reason why I'm happy that the site is organized that way).
posted by rue72 at 10:00 AM on August 1 [15 favorites]


Another "am I or am I not neurotypical? I have no idea" person checking in. Diagnosed with "sensory integration dysfunction" in the 80s, kinda-sorta "grew out of it" but there are times in periods of stress when my brain throws its figurative hands up, says "fuck it" to the amount of inputs coming in, and the ability to Do Words goes away for a short period of time. Also did I really "grow out of it" or did I develop an extremely complex array of coping mechanisms? (It's time for Centipede's Dilemma!) I didn't really say anything in the #actuallyautistic thread because I still don't know. I'm certainly not diagnosed, other than the 1980s-vintage pre-pubescent dart on the board.

So everyone else that's posted something along similar lines: I see you.

I rarely post because I don't want to get it wrong. I either want to say something insightful, give a direct *mostly positive* response to someone whose comment struck a chord, or else... I dunno. And then the thread already moved along and it's too late. That's not really a critique of MeFi; that's a lot of places for me, and honestly the comment box here seems a lot friendlier here than most others.
posted by pianoblack at 10:42 AM on August 1 [5 favorites]


even allowing for some measure of wildness, intensity, and (even) conflict in communication and relationships


There is a difference between having a disagreement and attacking or criticizing someone. I am accountable for the things that I do that come from mental health issues even if they are destructive or embarrassing. I cannot get away with saying I went off on someone lol oh well. I think it is fine to expect graciousness in communication and understanding of the context within which things are said, but where is that line drawn?

I mean what is the point of having moderation if it is equally important for someone to feel safe being antagonistic as it is for a survivor of violence to feel safe having a space to talk?

I mean no offense. But practically speaking, whose rights take precedence in that scenario because I'm new to MeFi and don't actually know.
posted by crunchy potato at 10:51 AM on August 1 [1 favorite]


it wouldn't be good framing for the site for me to do a round up of "my fav DID links" for example

Mod word of support on this: it probably would be workable! We have some boundaries on post framing expectation but we're trying to be a little more flexible about them these days. So as a general thing, if you find yourself thinking about a post but not sure if it'd be workable, please feel free to run it by the contact form; we're absolutely, always happy to talk through a post idea and most of the time the answer ends up being "yeah, that seems fine" with maybe a suggested tweak or two.
posted by cortex (staff) at 11:23 AM on August 1 [5 favorites]


I can't comment all my diagnoses specifically due to not being "out," but I am out as having severe inattentive ADHD and significant sensory issues, including sensitivity to a lot of kinds of noises, proprioceptive issues, easily visually overwhelmed, can't regulate my temperature, difficulty discriminating between different sensory channels, vestibular issues, and a lot more. I take Adderall for my ADHD and it absolutely is one of the things that I did for myself in my adult life that I consider among my best decisions.

Metafilter works for me in that I can follow the conversations (I cannot follow threaded websites at all, Reddit is a nightmare to my visual overwhelm/ADHD) and that the layout is simple without a lot of junk junking it up. I do get overwhelmed by catchall threads like the megathreads, and really just stay away from them. I also have a hard time following things like podcasts and for whatever reason I very rarely can convince myself to watch a linked video, I think because it breaks my ability to concentrate on reading whatever else I was reading and I know I won't be able to get back to it.

I also am a MH professional with considerable experience, and it bothers me GREATLY when I see people armchair diagnosing (different from self-diagnosis which I look at this way: if it is personally helpful to YOU to have that as a framework for your life, then go for it - your experience of yourself is valid! But other people don't need to be doing that.) I get especially irritated when the diagnoses come from folks who SAY, "I am not a MH professional..." it's like... then why are you trying to talk about this, if you self-admittedly do not know what you're talking about? I often want to suggest that folks stay in their lane, but I know that's not an accepted way to be on the site, and probably I guess unhelpful in the long run anyway, as well as unrealistic to think that humans will do that. But it really bothers me and it makes me worry about the people who read that and then might get mistaken ideas about themselves or their situations or whatever. I sometimes feel like I should push back against that, but feel like I can't or that it would not be taken well or deleted, which then is like, what's the point? But I feel like it would serve everyone well if folks would refrain from offering diagnoses because seriously, 99% of the time that's not helpful.

One of the things that I do really like engaging with is when folks ask questions about ADHD that I feel like I can answer because of my lived experience of it, and I get excited when I feel like I have worked out these issues in ways that seem to really work for me, and I get to offer some support to another person struggling with ADHD, because it can be a SLOG and feel really overwhelming and impossible to sort out. It feels like an offering to the community at large to get to share that part of my experience with someone else who might need that support, and I like reading the questions and getting other people's ideas as well, for myself.

If I think of more that I can add, I will - thank you for posting this and I have really appreciated reading everyone's contributions - you are all wonderful with your openness and I have already felt held and embraced and seen with this thread! Thank you everyone.
posted by fairlynearlyready at 12:35 PM on August 1 [12 favorites]


I don't want to go too much into my neurodivergence because another interaction on the site has made me feel tender with fear of being made fun of for oversharing, but I have learned so much about myself through Metafilter. Thank you to everyone who shares pieces of themselves here and especially on this particular thread.

mittens, your comment early on in this thread resonated with me so much. It took me a long time to start commenting on Metafilter under my first username, and that didn't go so well even though I was spending so long trying to make sure no one would misconstrue what I said. It ended with a disagreement with a mod and a lot of hurt feelings, so I lurked for a few years before I started up this account. I've had this account long enough and made enough comments that I feel like in the past year people have maybe started to recognize my presence and give me more leeway to stumble than I ever had before. That feels so silly to say. I know I am insignificant on Metafilter but I feel more at home here than anywhere else online.

It takes me such a long time to write comments (and emails, and text messages) and spoken communication is even harder. I feel deeply about what I perceive to be injustices and I often have to stop reading threads when I find myself too upset by comments that I think are rude, unkind, or unhelpful. I don't participate in the ways I feel like I should — with shorter, less sensitive comments. Often my contribution is to respond to another person who I feel said something that sets off a "someone said something that wasn't kind/just/helpful" alarm. That overly sensitive call to respond is why I can't participate online in very many places and still struggle here.

And while I have started to feel more welcome here it strikes me how unwelcoming it can be if you don't have a username that's easily recognized, if you haven't somehow "proven" yourself to be worthy of kindness. And I am more aware having read this thread about how my own tendency to want to white knight is unwelcoming to people who I have failed to see are struggling, just like me, to express themselves, or to anyone wondering if they're safe to say something that could be misconstrued.

danabanana, I recognized your name from that year's cookie exchange and wanted to say that you don't need to apologize to me for the lack of cookies. :) I am very glad that you're doing better. I relate very much to your comment even though my social anxiety makes it really hard to say something like this because oh god am I making this person feel some kind of social obligation to me.
posted by the thorn bushes have roses at 3:44 PM on August 1 [14 favorites]


Okay, I'm going to chime in here. I hope I don't upset anyone, and I am a bit scared to speak up on this subject.

I have never found that this site in general is hurtful regarding neurodiversity. I have read many threads pertaining to mental illness issues and autism spectrum issues and as a rule the impression I have got of the neurotypicals is that they may be clueless but they are generally nice. I have the impression that to many of the neurotypicals on this site, neurodiversity issues are unimportant and boring. But I am fine with that, because there are a lot of posts on the site that I find unimportant and boring, generally about popular culture, such as music or sports.

But I have, on more than one occasion, had someone who identifies as neurodiverse take objection to something I say and tell me that if I were neurodiverse I could never say that, and that I am clueless and hurtful. Or at least that is the impression I have gotten from one or two painful go arounds that I have been involved in.

I'm going to be the first to admit that I know very little about what it is like for other people to be neurodiverse, and I can be clumsy, clueless and tactless so I suspect I come across as threatening to some neurodiverse people. I also suspect that sometimes I can be insufficiently sympathetic when it comes to communicating with people who have emotional regulation issues. Which means for someone who has emotional regulation issues I would not be surprised if, although I am trying to be tactful I come across as if I am wielding a bludgeon and attempting to incite a mob.

My experience comes from being a member of a a family where there were one or two people three generations ago who were never diagnosed with neurodiversity, most likely only because they were born and became older before autism spectrum was a known diagnosis, but it has bred true ever since then, sometimes in rather flamboyant ways. And my experience is that there is such a wide spectrum among the neuro-diverse that what is true of one individual is often very not true of another.

For example I've been lectured that someone on the autism spectrum is going to be sensitive to noises and require quiet in order to concentrate or even think. Whereas I had one child who could not think if it was quiet and would bounce and get frantic and cranky if there was no background noise, but found music on in the background extremely helpful for studying, as well as another child who could not concentrate if there was any noise. I had to homeschool them, and they had to do lessons in different rooms because one would distract the other one or overload them. They were both officially diagnosed; One that couldn't shut up and one that was almost non-verbal; One that became non-functionally anxious if he was alone and one that ran away to be alone whenever she could.

So when someone tells me I'm wrong about what it is like to be neuro-diverse I feel that my input is being discounted. It's always been other neurodiverse people who do this. I guess that I somehow am passing for neurotypical - and that flabbergasts me, because I have major sensory processing issues and have the hyperlexia version of neuro-diversity. Learning to read was the breakthrough that made me decode auditory processing and verbal communication. I have prosopagnasia so badly that I can fail to recognize my own children and my husband if I run into them somewhere I don't expect to see them or if they have changed their clothes. And I have a lot of problems in public situations because I cannot stop stimming. So when someone here tells me, Shut up, you don't know... I just don't know how to respond to that. I know that escalating and shouting "I am more autistic than you are!!!" is definitely not the right response. LOL (But that is what I just did here, to be honest.)

I want very much for Metafilter to be a good and safe place for everyone. And I don't have a dog in this fight, because if it is going to be a fight I am going to take my puppy away to be safe at home. Nope. This is more your territory than mine. I'd always rather back down, or rather err on the side of being kind. But at the same time I have felt several times that this is not an entirely safe place for me to be neuro-diverse because other people have told me that my opinions on neuro-diversity are not valid, and probably not welcome either.

Well, I know I am sexist. I am female and that in no way stops me from being sexist. And I know that gay people can be homophobic or hate gay people and their own gay traits. But I thought I rather liked autism spectrum people and their traits. The focus that so many of them have, and their ability to accept not being conventional and to accept that in others, their fascinations, and the way their brains work, and what I learn from them about how they think and how they perceive things - that's beautiful to me. But it is still perfectly possible that I am insensitive to neurodiverse people and to their issues.

So what I am struggling with on this site, is the perception that where my neurodiverse experience here is different from other people, mine is not an acceptable version.

Metafilter is where I go to have tribe with words and ideas. That's awfully important to me. But at the same time - if anyone tells me I don't belong here I wouldn't want to stay. It's too hard to edit, to squelch how I think and what I talk about. I already edit a lot, and consider what I am saying before I post, so I have a massive amount of censorship and second guessing going on - and I still mess up and get posts deleted. I know I keep putting my foot in my mouth even though I am trying to edit so that I don't make myself unwelcome.

There's so much that's fun and warm and fascinating about this site. I'm more than willing to adapt as much as I can to fit in. But perhaps I'll need to adapt beyond my capabilities. And if that happens, well, I long ago learned that if you have to fight for something it is almost always destroyed in the fight, so nothing is worth fighting for.

* Sits for several minutes trying to decide whether to hit Post Comment or not *

*Still can't decide *

*actually feel sick to my stomach. That means I shouldn't post. But I want to be heard. *

Mods, please delete this comment if this is not appropriate. My apologies if that is so.
posted by Jane the Brown at 3:45 PM on August 1 [42 favorites]


we're all struggling with the same desires for inclusion and respect.

Shit like this comment suck. "Men can be real shits."

It's a gendered generalization that doesn't substantively add to the discussion, and in fact serves to put down those of us who are men.

I'm autistic. If we are being charitable to my mother, she was a navy wife in the 1970s 2000 miles from friends and family with a boisterous, stubbornly abnormal boy and a husband in Vietnam or Pago Pago or Guam. The abuse... well, it was almost as predictable as it was horrific. And, there was a strong gendered component to it - my sister wasn't abused as I was - in fact, she was encouraged to join in. This childhood of mine laid the groundwork for the abusive relationships I have had throughout my adult life - including my recently failed marriage.

Throw in the white trash upbringing as a bullied kid on the wrong side of the tracks, and frankly we should all be surprised I'm not dead or in prison. Let's not talk about the PTSD.

Society as a whole, and Metafilter in particular do not do discussions about violence towards men particularly well. In fact, MF tends to pretend as though violence by women doesn't exist and goes full in on the misandry with some regularity. Let's not even start with the ways in which men are expected and allowed to not express emotions.

I like Metafilter as a place where we are all broken in our way and our trying to navigate those spaces and talk about things in a place that doesn't disparage us. Except, metafilter straight up allows shit like this to stand - and the site is diminished for it. If this is meant to be an inclusive safe space - then it should be inclusive of everyone. Generalizations and stereotypes suck.

All of that said - I think my time here is drawing to a close. It's been a valuable community to me over the years. I just don't feel welcome here any more. The above is part of it. But also... well...

I just don't get joy like I used to from the site.
posted by Pogo_Fuzzybutt at 4:04 PM on August 1 [15 favorites]


I've skimmed a bunch, here's my thoughts going through the thread:

1. I also find using recent activity difficult, particularly on mobile, for all the same reasons mittens mentioned!

2. Being a neurodivergent woman is exhausting any time anything etiquette/social norm comes up. God, the interruption thread.

3. I've managed the fantastic/horrible for ADHD facet of Metafilter by going through everything new at the beginning of the day, shunting off to Pocket anything that's not time-sensitive or that I don't feel like I'll need to be Part of the Conversation, and leaving up what's left. Most of it goes in Pocket and contributes to a huge backlog, but it helps me prioritize what's really important to read RIGHT NOW versus some other time when I'm bored.

4. Neurodiversity started with the autism community but has by many been expanded to include mental illness, not because autism/ADHD are mental illnesses but because both autism/ADHD and mental illnesses are differences in your brain that impact how you interact with the world and it's a commentary on who the world is set up to accommodate. My understanding is that it comes from the social model of disability, which separates illness and disability: you can be disabled and not be "sick" or have anything "wrong" with you (e.g.: deafness) and you can be disabled and definitely be sick (e.g.: fibromyalgia). Under the social model, both deaf and chronically ill people can accept the label disabled (though not all do) because it's not a commentary on what's "wrong" with you, but what's wrong with society. Neurodiversity has moved towards a similar meaning, in my understanding. It's about how the world sets up barriers for people who think and interact with the world differently.

5. Oh boy, going against CBT! As a therapist-in-training, I keep writing questions in my head about mental health (specifically, health anxiety) that include in big bold letters "DO NOT SUGGEST CBT TO ME" but I never actually post them because I am just going to get a bunch of people telling me really, CBT will fix me. Btw, the science says CBT only works SLIGHTLY better than any other well-researched mode of therapy (including psychodynamic, which is a mode I personally hate but works for some people). Also on "just find a sliding scale therapist!" Sorry, some people are in a position where they can't even do $10 a week.

6. Oh god, the love for meditation and mindfulness. I'm not gonna even get into that.

7. I've never entered Metafilter chat because I have no idea what it's going to be like, is it going to announce "brook horse has joined the room" and people are going to be like "hi there!" and I'll have to commit to responding and not just absconding? Can I lurk to get a sense of the culture? Should I go there if I need to vent about something/am in need of emotional support, or no? Etc. etc.

8. Edit window is a lifesaver, also wish it were longer.

9. I also, like Mizu, bring up my neurodivergence a lot to provide context for my life, like. I once made an AskMe question using "I'm neurodivergent" as shorthand for a bunch of complicated reasons why I struggle with beauty/makeup/hair routines and someone basically responded "Neurodivergent? The crap kids come up with these days." So, now I'm anxious about doing that.

Anyway. Now that I've sort of read it all...

My one official diagnosis is "cognitive disability not otherwise specified, secondary to axis ii health condition." The description of that entirely useless label is "brook horse experiences significant executive functioning/planning/organization/memory/attention issues, but these are likely due to her chronic illness and the seizures she used to have, rather than ADHD; still, she would benefit from ADHD accommodations, ADHD resources, and getting involved in the ADHD community. Oh, we're also concerned about her lack of friends and her sensory issues." I've gone back and forth on an autism self-diagnosis (I was initially going in for difficulties with math, so autism was never even considered as something to assess for); mostly it's dependent on if I've recently been around my autistic friends who tell me I'm probably autistic, or my colleagues and professors who tell me no one can ever self-diagnose.

I also had what I'm pretty sure was a major depressive episode as a teenager. I mean, suicidal ideation was involved, so. I haven't struggled with that for a long time, so I don't generally speak to that experience, except for when people start complaining about the evils of social media and the internet and I feel compelled to say, "I would literally be dead without access to social media as a teenager." But also a lot of that came from having literally no friends in high school and being shunned or mocked for being weird, so we're back to the autism/ADHD thing. I also currently describe myself as "subclinically anxious" because I'm not really impaired by my anxiety largely due to the time and energy I put into not letting my anxiety consume me. I think my health and safety anxiety (which fits very poorly into any diagnostic categories because I'm pretty much only concerned with OTHER people's health and safety, but it's not generalized anxiety and it's not a phobia and illness anxiety is about yourself so??) is creeping a little over the line, though. But I haven't posted about it because the advice is going to be "get therapy" and like, thanks, I know, I can't make that happen right now and I'm conducting therapy.

Anyway, sharing that to say that neurodiversity is weird and complex and diagnostic labels never tell you as much as you'd hope, and that the umbrella has to be wide because very few people fit neatly into "clear autism diagnosis, clear ADHD diagnosis, nothing else is neurodiversity."
posted by brook horse at 5:42 PM on August 1 [17 favorites]


Oh also as someone who conducts neuropsychological assessments, diagnosis is so much less clear-cut than many people think. Pretty much ever ADHD assessment we do in our clinic brings up the question, "Well, is it actually anxiety or depression?" Because lots of people have presentations that could equally match just ADHD, just anxiety, just depression, or a mix of the three. And lots of people walk out with just an ADHD or just an anxiety diagnosis, when they very easily could have been diagnosed the other way, under a different supervisor, if they'd answered one or two questions on a self-report form slightly differently, if the interviewer had asked a few different questions, etc. And this is in the university clinic that spends much longer than average on assessments--we do 2-hour interviews, and then 4-8 hours of testing. At a local clinic I work in, the entire assessment, including interview, is done in 2 hours.

So I don't put a ton of stock into diagnosis as a way of delineating anything. It provides a convenient shorthand to indicate "my experiences are vaguely in this area" (which is useful for both community treatment and access to treatment) but I don't think it's good for drawing boundaries.
posted by brook horse at 6:02 PM on August 1 [17 favorites]


Metafilter helped me figure out my ADHD (I think it was a comment about how many tabs people have open at once) and I am appreciative of it for that. I've been three months medicated now and it has been phenomenal, as has the professional confirmation that no, I'm not just a hot, lazy, distracted mess. But I definitely can see how rejection sensitivity dysphoria has come into play in my site interactions. I've also had portions of my life for-real sucked away by massive metafilter threads that I've hyperfocused on, and that's part of the reason I've stepped back from the site a little bit. There was one new years eve when I could not look away from an argument about ipods, of all things, and making a decision to just argue less has been good for my productivity and mental health.
posted by PhoBWanKenobi at 6:26 PM on August 1 [11 favorites]


I just want to rage, rage, against every doctor who's been not cold, but...

One day, I was at the doctor. My husband came in with me. I started talking about something, realize, my anxiety ramps up a lot before a doctor's visit, and when I get frustrated, I cry.

She said, "maybe it's time to refer you to the mental health clinic."

And I went along with it, knowing in my heart of hearts that it wouldn't be good for me. I've seen shrinks, been to therapists, done the yoga, eaten the foods and smelled the essential oils.

I get into this place, and this guy, a Nurse Practitioner, starts drilling me with questions. "Who was that doctor that diagnosed you? What was his name?"

I said I'd like to get a benzo for time when I was anxious, and he laughed, and said, "Nice try!"

Then he told me how my brain was like a choo-choo train and all about serotonin, and when I said, "I can't take SSRI's, they mess me up, and my Psych doctor told me not to take that class of medicine," that's when he began the pointed questions. It was the most horrible experience I have ever had with a mental health "professional" barring the AA therapist, who used to scream at me, "When was the last time you had a DRINK!! You KNOW I am in AA! I can't WORK with YOU!" Even tho' I wasn't drinking when I showed up to her appointments, that was fucking bizarre as hell, but this guy was so snide and condescending. I mean, "nice try." Like I was trying to get relief for my anxiety, you fucking asshole. I only came here because my doctor thinks crying means I am mentally ill, for fuck's sake. I cry. Sometimes I cry. That doesn't mean I'm stupid, you cocksucker, it means I'm human, and I guess if you are working in the mental healthcare field, you might want to treat people as if they were human beings, for fuck's sake.

Like the time I got a tooth pulled, after 3 palette shots. I started crying, and the dentist looked at me and said, "I'm worried about you. You should go to a psychiatrist and get some Zoloft for your depression." Since when is CRYING a big deal? Only if you do it in a doctor's office, apparently.

Lesson learned: never cry in a doctor's office, ever again. Never let them see you sweat, or they might diagnose you with something arbitrary. No matter that I have been to an actual psychiatrist and multiple therapists for my anxiety, I have Generalized Anxiety Disorder, and it crops up here and there, and everywhere! Yay! Go me! Never mind, it's all in my head, right? Every time people ask why don't I have a real job? Buy me a car? Nope, pull yourself up by your bootstraps! Walk 15 miles to a job! I can't work longterm due to the anxiety, but it's invisible, no one can see it. I am high-functioning at home, in my space, but neighbors come by, or I have to go to the store, etc., it sets me off in weird ways. Ways that I can't describe, it just does.

And then I get irritated at my husband, the nicest guy ever. He knows about it, and he's good about it too. I feel bad, tho'. Embarrassed. I'm smart! How can I let this thing overtake me! But he is very calm, and that helps a lot.

One day, I was in the restroom at the grocery store. I was irritated, as usual, wanting to get out of the store, but I had to pee, so there I was. I was washing my hands, then drying them at the paper towel station, when I noticed a young woman waiting.

"I'm sorry," I said. She said, "Take your time." And she was so kind. It was like kindness vibrations emanating from her. I felt it, physically. It made me want to cry, because that's all I've ever wanted, was kindness like that, not someone telling me I'm deficient because I cry sometimes, or get anxious riding in the car, or over any number of other things. I'm not less of a human being, I am a HUMAN BEING. I don't fit into the norms, in my family, or in general, I guess, I am lonely most of the time, and sometimes I crawl into bed and hugs my stuffed dinosaur and cry for a while, and then I get up and do some things, but fuck, it's hard sometimes, y'all. I wish that kind lady would come visit me.
posted by Marie Mon Dieu at 9:02 PM on August 1 [27 favorites]


Yay. The autism parents have found the ABA thread. Now the thread will be all about them. FUCK.
posted by Homo neanderthalensis at 9:10 PM on August 1 [8 favorites]


You know. There are actual consequences now to me being in a horrible mood all day tomorrow because of a shit autism thread, because of the whole employed now thing. So I guess this is goodbye for a while.
posted by Homo neanderthalensis at 9:18 PM on August 1 [1 favorite]


I hope you can take some time to unwind a bit and that work goes well for you, Homo neanderthalensis. Cortex appears to have modded the heck out of that thread so there is some hope for it yet.
posted by Mizu at 9:36 PM on August 1 [5 favorites]


Hey, yeah, I wanted to touch base on that; I've been sorting through the comments in there and trying to find a good line on what to pull out and how to frame a note, and hopefully it's in okay shape now and will have a better trajectory going forward.

It's a challenge sometimes to simultaneously keep up with what's developing in a thread and execute the series of mod actions required to get things steadied out, and I know it can be frustrating when that takes a little time to get done. There's often a trade-off between acting fast and acting carefully and it's an uncomfortable one to try and balance out in real time when I know folks are already watching with concern or feeling upset about the state of a thread. I appreciate the patience with this sort of thing. We'll continue to keep a close eye on that thread.
posted by cortex (staff) at 9:43 PM on August 1 [7 favorites]


I hate to lose your voice here, Homo neanderthalensis, but understand completely the need to prioritize the ability to get through a day over waiting for the next defensive comment to take you out. Hopefully you get some good to balance the bad the next few days.

Incredibly grateful for the mod work to steer that one back on track. It is hard to undo the hurt once a comment lands but it’s helpful to see the expectation be set clearly.
posted by the thorn bushes have roses at 9:54 PM on August 1 [6 favorites]


I was the parent in that most recent autism thread that pissed off Homo neanderthalensis. I found their reaction to my comment in that thread surprising. I don't think I was talking over anybody. I related a brief anecdote about mine and my son's experience with ABA therapy and they told me it wasn't ok for me to talk about ABA and that I tortured my son.

For what it's worth, to touch on the subject of this thread, Metafilter has been a major help to me in understanding my own mental health. I've been a member for a little over ten years now, and coincidentally, these last ten years have been rife with trauma and depression and self-discovery. Reading threads on metafilter helped me to understand some of the problems I was having in my life. Basically, when I signed up in 2008, I would have described myself as neurotypical. But in raising my kids, two of whom are neurodivergent, and coming to terms with a number of issues in my life, I came to understand that I have pretty severe inattentive ADHD, along with major depressive disorder. I saw the symptoms of ADHD in my daughter, and recognized that I'd been experiencing the same things my whole life. I see the way my son relates to movies, and the way he obsesses and talks non-stop, and I see myself when I was his age. I hear him tell me that other kids tell him he's weird and I remember feeling ostracized by other kids. Without metafilter, I'm not sure I would have had the language to recognize any of these mental health or cognitive issues in myself or my kids. And I might not have sought my diagnosis or theirs, and I'd be a whole lot worse off for it.

My biggest problem with the site is just that I can so easily get sucked into hyper-focusing on it, to the detriment of everything else. But that's not metafilter's fault. That's something I have to work on. And right now I'm obsessively going over what I said in that ABA thread, and Homo neanderthalensis' reaction to it, and I'm stressed out that I am being insensitive to their experience, while also managing the feeling of being really upset about what he said to me and trying to keep my impulses in check and remember that arguing on the internet is stupid and the whole reason I like metafilter is because at least the arguments here aren't stupid. So maybe as a neurodivergent parent of an autistic child I have my own thoughts about all these subjects and it feels pretty shitty to have someone who has no fucking idea who I am or what they're talking about try and silence me and shame me, basically the same behavior that they're complaining about in the first place.
posted by wabbittwax at 10:13 PM on August 1 [6 favorites]


wabbittwax, for what its worth - I think I'm probably the problem parent, since my comment got deleted and yours did not.

I'm just going to say one thing, and then I think I'm actually going to button for a while, after 18 years here:

Autistic children don't exist in a vacuum. They are raised by parents who are doing the best they can. We want to listen to you. But please also let us ask the questions we have. It is not in fact "all about me" - it is, for me, all about my kid. But until said kid is old enough to use Twitter, you're going to have to talk right to me, and answer the questions I have, if you want to help.

That's all. I'm out.
posted by anastasiav at 10:22 PM on August 1 [6 favorites]


Did most people who were diagnosed get intense diagnostics or more testing?

Ooh, something narrow and concrete I can contribute yay! I don't know about most people but yes my process of diagnosis took months and involved lots of tests both biological and psychological, conducted by several people, as well as reviews through my personal and academic history going back decades. I've heard anecdotally that experiences about that vary widely. Actually I think "experiences vary widely" could be a motto for this thread!

And god forbid you are someone who isn't an excellent written communicator, or is scattered, or nervous, or not great at reading the room. You will be ripped apart and spat out as you scramble to clarify yourself to someone who actually isn't interested in you or what you have to say - they've smelled blood and tens of favorites.

Lots of people have expressed things in this dimension and I'll add my voice too. It can be so hard, especially to control my own "someone is wrong on the Internet!" impulses when it is a fast-moving conversation on a subject like this one that has real consequences for vulnerable people and it's so much of that, not even 101-level but remedial 090-level hot takes. And I just wanted to skim through fun stuff about Egyptian sourdough before work but now I have to dig up old lecture notes on SSRI effectiveness fast enough to not be late because "just give it a pass" is a great model for having focused conversations that don't get too fighty but not good for talking about people's deepest levels in ways that will affect them while also excluding them. In other words,

You know. There are actual consequences now to me being in a horrible mood all day tomorrow because of a shit autism thread, because of the whole employed now thing

Yeah that.
posted by traveler_ at 10:38 PM on August 1 [4 favorites]


I had to scroll down through the last thirty or so comments, because it was starting to really twitch me out. I’m not sure if I’ll be following this thread or not - if someone wants to say a response specifically to me, memail would be best. I’m going to put a content warning for gendered violence here as well.

I think this stuff is really complicated, and it doesn’t always map well on “be kind to neurodivergent/be cruel” axises.

I have fairly severe PTSD, and most of it is exacerbated or worsened by other people - well, specifically, men - with PTSD, who are not managing it well and are allowing their anger and violence to spill out onto people like me, who also have PTSD but are trying so hard every day not to let it harm others.

The severe domestic violence that caused my PTSD - to be clear, since I’ve given a content warning, my violent and brutal physical and sexual assault - was something done to me by a man in the grip of a mental health episode that he would no doubt say was not his fault. .

So when folks are suggesting - or seeming to suggest, I readily admit that my own trauma may be keeping me from a closer read - that we shouldn’t call out abusive behavior because it may be a symptom of some mental health problems, it triggers the fuck out of me. That doesn’t mean they shouldn’t suggest or talk about their own feelings, but it’s a reason why this stuff isn’t easy to accommodate for everyone. Accordingly, I also found the hikkomori thread unpleasant but for very different, gendered reasons - because it seemed to me that people were coming in to say that poor treatment of family members was acceptable if it was for mental health reasons.

No one needs to listen or even let this into their thoughts, but I thought it was important to state as a datapoint, since opinions were requested.
posted by corb at 12:51 AM on August 2 [23 favorites]


As someone neurodivergent who expects to become a parent in the near future, I am also sad that I can't hear from parents' perspective in that thread.
posted by value of information at 1:43 AM on August 2


I was going to sit back and just read the thread for a while, since I made a lot of comments early on, but I wanted to drop back in and say something about how hard it is to have a thread where there appear to be two sides who both feel the need to be heard, but who cannot be heard in the same space, for reasons of safety or silencing. It's a topic that keeps coming up, and has come up in several ways in this thread, and I always get nervous when I see it, because the only way to handle it is to put up firewalls between the two sides (is that the wrong metaphor?) so that they can both express what they need to express, without infringing on the other.

Here is a very bad analogy. Sometimes people I like, people I can talk to, turn out to go to church. They feel like they are deriving great spiritual comfort from it. Now, I know the real and awful truth about church, because of my own experiences being absolutely traumatized by religion a number of times; I know religion is dangerous, harmful, and my repeated encounters with it have left me scarred. So of course if they bring up their experience, I need to shout them down and explain why they're part of an abusive group...right? But no, not right, because they're not being abused, and they're not abusing anyone else, and they've found a corner of religion that I never found, one that is positive and nourishing. But what am I going to do with all this righteous anger? What can I do with all this hate? And so I have to have some kind of firewall between us. If I have my way, I would silence them, which wouldn't be fair to them. If they have their way, it would silence me, and that wouldn't be fair to me.

The two conversations, the two outlooks, cannot exist in the same room. Like some kind of psychological exclusion principle.

I kind of lost it during one of the last big metatalk threads, I'm not sure which one it was at this point, they kind of blur, but I kept seeing people leaving, and it just hit one of those emotional triggers (I'm using that word in a more casual sense), because even though I don't know the people who left, and they certainly don't know me, it felt like dear friends were fleeing, and the terror of rejection set in.

I just had a paragraph I kept writing and deleting, because I'm not sure how to express the thought correctly and without being offensive. One of the themes I keep hearing in this thread is fear of being involved in a conversation due to not being woke enough. An understandable fear because we are mashing together a lot of identities and topics. It's hard to be marginalized across one or more axes, and to get used to that dynamic in conversation, then to suddenly find oneself in the dominant group in a different conversation, where there are totally different expectations. Oh god that's vague. So, a more specific and personal example: wow it's hard to know how to communicate, as a queer disabled white person, when the topic of race comes up. My usual conversational tools, sarcasm, disdain, seven hundred pages of autobiography--suddenly become meaningless when I am in that conversation, and not only do I have the usual white fragility to deal with, but also all this other fragility that comes from my emotional and cognitive differences, from a long history of not being heard, a long history of being actively silenced and shamed.

The firewall also comes really in handy there. Telling myself it is okay not to talk in those threads. It's okay just to enjoy other people's voices, because listening is not the same thing as being silenced.

Similarly, trans threads. I think I said some offensive things on Metafilter in the past in terms of trans identity, because sometimes when you have questions--even questions regarding yourself, your identity--asking those things in the wrong context, in the wrong conversation, looks like "i'm just saying" or "let's play devil's advocate"--which is to say, it looks like conversational aggression. So I don't comment on those threads anymore, but in the meantime have been blessed with trans friends of both binary and nonbinary types, and when I have questions, or need to do a little more spelunking of my own identity, I can talk to them in a much safer environment, where good faith can be assumed in a way it just can't in a large, diverse group like this.

My point (finally!) is that I think so much conflict--and thus fear and terror for those of us who are not mentally ready or disposed or equipped for that kind of conflict--comes from two different conversational needs colliding (and that's not including the conversational want (as opposed to need) where someone Just Has An Opinion and blunders in), and one discussion I would like to hear is how does one manage that collision, is there anything other than the firewall that helps, is there anything other than sitting back and being quiet that helps? How do you navigate it when people on both sides are so stressed out and hurt by the collision that they have to leave for a while? How do we determine who has to be quiet this time or that time? And, getting back around to one of the other themes of this thread, how does one keep safe during these collisions?
posted by mittens at 5:55 AM on August 2 [38 favorites]


It's okay just to enjoy other people's voices, because listening is not the same thing as being silenced.

I think this could be a central message for MetaFilter going forward: listening is valuable, particularly when you are in the majority and the topic is about a minority. And you included a part I hadn't considered before: passively reading in those situations is not the same as being silenced. Some conversations are not for you, except as possibly a way for you to learn about different life experiences and viewpoints. (And by "you," I mean me and/or the reader.)

mittens, thanks for sharing your thoughts.
posted by filthy light thief at 6:19 AM on August 2 [23 favorites]


I'm going to be an old person for a second. There are so many more labels/categories today than there were when I was figuring myself out. To leave the mental health axis, I struggled really hard with straight/bi/lesbian because the answer kept coming up "none of the above," and that wasn't one of the options. Some of the newer terms seem a better fit but it's not my paradigm and I feel like adopting one of them would be like barging in all "How do you do, fellow kids!" I'm having much the same reaction to neurodivergent. I've known most of my life that my brain just does not work like most other people's and that some of the differences are amazing, some suck, and some only suck because they're different than our world is set up for and that friction is the actual suckage. But I don't need the label and don't want to appropriate it from people who do.

As far as the different between neurodivergence and mental illness... My primary diagnosis has always been depression, with likely ADHD. As far as I can tease things out, the depression seems largely trauma related, but a lot of what was traumatic was only as bad as it was because it came in filtered though the pre-existing ADHD. Is it really post traumatic stress if the trauma was me pulling my own mind apart trying to find out what was wrong? (And, to be fair, some people being flat-out horrible about anyone who didn't fit in.) If I processed things as attacks because of the way ADHD processes overstimulaion and social pressure? At this point in my life, my various labels have bled into each other, created a symbiosis and become something I can't rightly narrow down to a list of acronyms anymore.

(I also have some existing damage around stating any personal experience of self as fact, because then I can be argued into admitting that my personal experience is objectively wrong. That's nobody's fault here, though it informs my pattern of flinches.)
posted by Karmakaze at 6:45 AM on August 2 [6 favorites]


This is all kind of getting at thoughts that I've had in the past, that it kind of seems like some topics just aren't great for general discussion. The problem being that this is a general discussion site. For example, after so many threads where men's mental health was discussed in a harshly critical way, I keep coming back to the feeling that I'd rather just talk about this stuff with other men. Not because I can't take criticism, not because I don't think women have valuable perspectives, but because there are certain things that won't be as easy to understand unless you've been living with a male identity. There are certain things that are harder to talk about without sending the wrong message, unless your audience is coming from more or less the same place as you.

I recognize that in threads on mental illness in men, there is the real issue of mental illness serving as a screen for bad behavior. I understand that and I think it's important. At the same time, these threads have a real and detrimental effect on my own wellbeing. If the focus is shifted to mental illness as excuse, it starts to be a problem. If the discussion becomes one about how suicidal behavior is itself abusive, then wow that's not a good message to be sending someone who is suffering. Like, we're in the room with you.

I nearly quit the site over this thread about men committing suicide in Wyoming. This is TMI, but I had literally been planning serious self-harm when that thread was posted (not anymore, don't worry), and I felt like I too was an isolated, lonely man on the brink of suicide. So I go in, and there's this huge long thread about how awful these guys are. It was a thread about politics. I won't rehash the arguments I tried to make in there, because I'm tired, but the point is it felt like it was just this abstract topic for half the people in there. You know, the same way people talk about red state voters and the problems in rural communities. Whereas for me, it was a little more personal than that.

Of course, it's personal as well for people who have been on the receiving end of violence from people like that. Who have dealt with angry, isolated men and had to clean up their messes. But this is why I'm saying it's hard for some things to be general discussion topics: it's one thing to talk about my problems and my difficulties with other people who can relate. It's another to talk about it with people who have every right to be tired of dealing with people like me. When someone comes in and says "I am SO SICK of men like this," I have to remind myself that they're coming from a different place, with valid hurt and frustration; but it still hurts, and it still shuts me down. If I say "yeah, it's really hard to seek help when your friends stop talking to you," it reads differently if there's been a bunch of comments about how men make excuses for refusing to seek help.

So in addition to wanting a place where people will relate, I'd also rather have a place where people don't have to hear stuff that's going to upset them for one reason or another: because it looks like I'm making excuses for the bad things other men have done, because it looks like I'm refusing to take responsibility for myself, whatever. The last thing I want is for my own expressions of pain and difficulty to send the wrong message, and I think they do, all the time. I'd be much more comfortable discussing this stuff with other men, and I'm more comfortable with the idea of men supporting men as much as possible.

It's something I can try to keep in mind before digging in on these threads when it feels like people are saying awful stuff about me personally. Because it is, of course, very hard not to hear generalized statements and take them personally. I struggle very hard with feeling like I could hurt someone (their feelings or whatever), and I feel paralyzed by threads marking my inner feelings (like the fear that I'll be isolated if I seek help) as monstrous excuses for monstrous behavior.

In general, please consider that on any given topic, someone in that thread will be personally affected by it in a way you may not be aware of. Beyond that, I'm just not going to read or talk about mental illness on this site anymore.

If we're talking about diagnoses, by coincidence I just had 1.5 hour psych assessment yesterday. Turns out I have... actually, they didn't tell me (but I can guess based on the medications I was given). I just like to tell people I'm a mess. I'm such a mess, more than I let on. Don't worry, I'm pretty heavily medicated now, and indeed the road to recovery is paved with off-label medications.
posted by shapes that haunt the dusk at 6:50 AM on August 2 [21 favorites]


It is not in fact "all about me" - it is, for me, all about my kid.

That's the fucking problem. Oh, I'm so angry about this. Oh, I can't even articulate well, I'm so angry. It's always about your fucking kid now, in the moment, your kid who is too young to speak for themself and who isn't here anyway. It's never ever about anything but your fucking kid--not you specifically, but whatever parents are in the room. Autistic people can't have conversations about anything without someone walking in to distort the conversation and wrap it around someone's fucking kid.

I was someone's kid, once. I don't have the same perspective my mother did. I certainly don't face the same challenges she anticipated for me. Many of my skills are based in looking at what she wanted for me and walking briskly in the opposite direction. And my story didn't end because I stopped being a kid. I didn't cease to be because I grew up.

Sometimes autism is not about the fucking children!
posted by sciatrix at 6:58 AM on August 2 [24 favorites]


shapes that haunt the dusk, I just wanted to say that I really appreciate all the work you do bringing these things up in the way that you do. I feel the same way so often, and you're incredibly good at putting into a palatable format.

Rereading your comment, though, there's so much hedging! So many qualifiers, so many "I know some people might read this in one way, but I really mean..." - I also think like that when I'm composing a comment, and I often end up arguing myself into thinking that I'm actually the problem - after all, if I have to be so defensive, and being defensive is a sign of being in the wrong, where does that leave me?

It's really, really strange that we have some threads where people who say "Hey, I'm pretty close to this, here's some insight from the other side" get pilloried for daring to identify themselves as possessing privilege and simultaneously struggling.
posted by sagc at 7:03 AM on August 2 [6 favorites]


And looking over my comment, I'll add the footnote that yes, suicide can be abusive, and I phrased that poorly. I'm just trying to say that there are times when it feels like (emphasis on the feel) anything I might want to say about the difficulties of having mental illness as a male-identified person will be seen as excuses for bad behavior from myself and others. Which effectively makes it feel (again, emphasizing that this is how I feel) like there are some conversations where mental illness in people like me primarily exists as an excuse. I know that's not true, and I know the people saying stuff I find hurtful may themselves be dealing with severe mental illness. But that's how it ends up feeling. I hope I'm making a comprehensible point here and not muddling it by getting too wordy: there are threads where I feel like I can't talk about the hardships of mental illness because the context of the thread is already one in which every one of those statements will be seen as an argument against accountability.
posted by shapes that haunt the dusk at 7:04 AM on August 2 [6 favorites]


sagc, thank you.
posted by shapes that haunt the dusk at 7:04 AM on August 2


It is not in fact "all about me" - it is, for me, all about my kid.

From the perspective of other mefites, there's no functional difference.
posted by Dysk at 7:13 AM on August 2 [13 favorites]


I didn't even see the original comments that were deleted and I'm spitting mad and frankly, it's so disrespectful and I'm so tired. I left a long comment in that thread and now I'm wondering if it was safe to do so. Nothing about us without us, and you take away it's all about my fucking kid--what is wrong with people?

If it seems like I'm overreacting, you try spending any amount of time in an autism discussion as an adult who doesn't trust the ways that well meaning parents can and do treat their children. You try being an adult with trauma from those self same well meaning parents. I can't. I'm going to be late for work because I'm so angry and tired, and this is just going to keep happening. Because already we see the complaints of "silenced all my life" and "you're just restricting discussion by over moderating it, the deleted comments were fine."

Clearly they weren't. I can't meet in the middle and keep trying to defuse and hold room for other people's trauma and feelings and concerns and, and put my educator hat on if this is the level of basic ass shit we get to expect in a thread literally entitled Nothing About Us Without Us. It is literally a battle cry against everything is about my kid.

How much more disrespectful can you get?
posted by sciatrix at 7:22 AM on August 2 [15 favorites]


Because already we see the complaints of "silenced all my life" and "you're just restricting discussion by over moderating it, the deleted comments were fine."

This bit is especially galling in a thread that specifically says at the top: "neurotypical people, take a step back and mostly listen". And yet there are people dropping in to add nothing but complaints about comment deletions to the conversation.

This is one thing metafilter is still bad for - open hostility to the idea or reality of any kind of accommodation for, well, anyone or anything, but especially mental health and neurodiversity. It reads as open hostility to the groups in question - at least it does to me. And it seems to be allowed to stand, unaddressed by the mods, far more often than similar hostility presented in any other format.


For the record, probably autistic, or something related. Getting assessed for formal diagnosis on the NHS as an adult is... challenging, and outside the NHS, well beyond my means. Have had it suggested to me by several therapists and mental health professionals, but none of them were autism specialists or anything. It explains a lot about both who I am, and the childhood and youth I had, and while I am loathe to claim the label based on self-diagnosis, it has helped me develop coping mechanisms and accept that I may just have different limits and abilities to the people around me, and what they consider normal.
posted by Dysk at 7:35 AM on August 2 [5 favorites]


I just deleted that comment about moderation - this is very much not the place for it. Sorry it stood for so long.
posted by restless_nomad (staff) at 7:36 AM on August 2 [5 favorites]


And one major takeaway I'm getting from this thread is that Jessamyn's oft-repeated phrase, "Everyone's hardest struggle is their hardest struggle", is very much true and we would all personally and as a community be better if we could keep that closer to the front of our minds, especially when we run into these places where, as mittens very cogently points out, we end up in a place where two different conversations can't comfortably coexist in the same thread.
posted by restless_nomad (staff) at 7:42 AM on August 2 [10 favorites]


So what I am struggling with on this site, is the perception that where my neurodiverse experience here is different from other people, mine is not an acceptable version.

Thanks, Jane the Brown. I've been sitting here wondering whether I had anything to add to this thread, and I think this kind of sums it up. And to be fair, I don't think the fault is with Metafilter so much as with discourses around neurodiversity in general.

For the most part, I've found Mefi to be a sympathetic space, pretty much the only one where I'd happily discuss this in depth, because by and large I think people are well intentioned, and very generous in sharing their experiences. When I was first diagnosed (late in life) with ADHD, this was one of the few places where I could find a grown-up conversation about medication that didn't treat it as a ploy by Big Pharma to sell amphetamines to children.

During the diagnostic process, I uncovered aspects of my cognitive style which are most definitely autistic. I should point out that I'm superficially very good at passing for "normal", so much so that I can sometimes fool even myself. But part of the journey towards self-acceptance and self-advocacy has been in disentangling functional impairments from the strange gifts that go along with it. To put it another way, for all the problems I've had over the years, I've always felt fairly comfortable with myself. I don't see any reason to change that because the world around me labels it as a pathology. I grew up knowing that I was different, and learning precisely how and why has been painful and confronting in some respects, but fascinating and life-enriching in others. And I honestly do not care if other people think that just because I don't stim (much), or because I haven't had a massive meltdown in years, that this doesn't entitle me to talk about the positive aspects of being this way.

So this is where the rubber hits the road, as it were. I try not to be confrontational but I don't mind being provocative. I'm rarely offended by another's good faith opinions when they diverge from mine, and if someone challenges me I try to engage with courtesy. I certainly don't want to belittle or negate anyone else's experiences, because goodness knows, this is not easy for any of us. I know I've been incredibly lucky in my life, and anyway, I prefer to work out my personal issues in private.

But I think we're all labouring with the misconception that neurodiversity is somehow a bad thing, a burden we should carry, to be tolerated rather than celebrated. I know this because I do it myself, and there are times when I feel the need to push back against it and insist on a better understanding of who we are as people, with or without that label, so that we can all function at our best and reach our full potential. It always comes back to this idea that we're struggling to carve out a place for ourselves, rather than getting on with the business of changing the world around us. Sometimes I want to yell it from the rooftops, that so many of the people who have changed the world, have had an impact, the artists, the writers, the scientists, so many of them were very likely on the spectrum one way or another, and that we need different kinds of minds to survive and make progress as a species.

And I fear that in saying this, somebody is bound to take it the wrong way, or call out my use of language, that maybe I should check my privileges, and just because I'm OK with being like this I can't possibly be part of the club. And we all end up doing precisely what the NT world has trained us to do, which is fight, judge and cut each other down for not performing autism correctly, rather than y'know, being kind and trying to help each other.
posted by Elizabeth the Thirteenth at 7:53 AM on August 2 [14 favorites]


Honestly I'd almost rather it stayed up? Like... It feels like gaslighting sometimes when something like that appears, and I talk about why it isn't okay, and then it vanishes, it's like it opens people up to claiming that that thing never happened, and why are you so angry anyway? And people can say what they like, but if someone gets angry, the comment vanishes and no one needs to know?

Like, I mean. I wind up feeling like there's nothing to point to when I say "I feel unsafe" and try to articulate that. I would rather just see a mod note to the effect of "let's not do this in this discussion in the future" if the comment is up long enough for someone to respond to. Let people see the whole thing instead of imagining what they thought must be there from the responses once it's already shaped the discussion. Because, especially in a conversation about neuro diversity... a lot of us learn by observing. When you can't observe, it makes it so much more terrifying to know whether or not you're going to make the same errors.

I'm mad and frustrated and I know there's a lot of conflict and I'm asking a lot and I'm trying, very hard, to talk things out and defuse where I can. But sometimes "oh shit someone got very angry, better delete that so it doesn't distort the thread itself" and erring on the side of deleting the original comment can have the effect of preventing people from learning from that incident... and also from affirming and talking about it in the aftermath in a way that helps people reading figure out what went wrong to begin with.

Like. Y'all aren't perfect. I know this. no one can be familiar enough with all communities and traumas to make decisions on the fly in a tense thread without making errors sometimes. But sometimes I think leaving a comment undeleted after a discussion like that leaves room for more discussion after it than deleting it outright does once it's gathered a response or two, and I think it really increases anxiety among people who are listening and watching to not have any idea what the thing that made someone mad was in the first place.

I'm mad, but I also value that other people commented and backed me up and saw that I was mad. Does that make sense? Deletions after conflicts make that hard to do, especially in a conversation about community metadynamics.
posted by sciatrix at 7:55 AM on August 2 [11 favorites]


Totally valid position to take, sciatrix, and I'm sorry it's not the solution that works best for you, but in my experience, leaving it up just traumatizes everyone *else* who comes in and hasn't read it yet, and if we're going for harm reduction, I'd rather avoid that.
posted by restless_nomad (staff) at 7:59 AM on August 2 [12 favorites]


Also a totally fair position to take; thank you for explaining it, and I'm gonna take another break from the thread now to let it breathe and let other people talk.
posted by sciatrix at 8:02 AM on August 2 [5 favorites]


I typed up a really long comment that I deleted because I'm too nervous to disagree with such a strong consensus of people I respect. But I'm going to try again, because I think the strong push for consensus MF tends to have is a little problematic and be the change you want to see even if it's uncomfortable, etc etc.

As someone who is not a parent of anyone neurodivergent or otherwise, but is quite likely to be at some distant point in the future (100% of my immediate family members are neurodivergent in at least one way, and many extended family likely are too)...I do value the parental perspective very much and I hope that we can welcome it in some threads, if not the particular one mentioned here.

I am totally fine with having "safe space" type threads where parents aren't welcomed, but I haven't seen an autism-related thread here yet where there hasn't been strong complaint about parent participation. I think it is A useful perspective -- I do not at all think it should be THE only perspective -- and I don't like the idea of universally silencing it as most people seem to be calling for.
posted by randomnity at 8:10 AM on August 2 [1 favorite]


I kinda feel like this is one of those things where mefi maybe doesn't need to be all things to all people. Parents of autistic kids should definitely have spaces to talk about their experiences - but spaces dedicated to talking about groups where their participation is explicitly unwelcome is perhaps not a good fit for metafilter.
posted by Dysk at 8:14 AM on August 2 [12 favorites]


Parents' perspectives on ABA are like men's perspectives on sexism. Is it possible they have something good to say? Sure. Should men come into a thread about women's experiences with sexism talking all about how THEY see it? No, probably not.

Listen. I'm an autism researcher. We have so, so, so, so much research on parents' perspectives. Literally, I just completed a literature review on autism and stigma, and there were three times as many studies asking parents about their experiences with stigma (not even their perspectives of their children's experiences with stigma--the stigma they as parents experience!) as there were studies asking autistic people about their experiences with stigma. This has happened in almost every single autism related subject I have ever researched. We are flooded with the perspectives of parents. I know you have the urge to share because you do feel silenced by parents of NT kids, you feel othered, you feel discouraged. I get it, and that sucks! But I promise you the stigma and silencing you face is so much worse for autistic people, so can you give us the space we've fought so hard for?

If you really want to help your kid, I promise you, one of the most valuable things you can do is just sit and listen to autistic people. Here's an anecdote: I help run a social skills program for autistic teenagers (I have mixed feelings about it, but it's part of the lab I work in, and I do my best to frame it as "this is not inherently the 'best' way to communicate/make friends, you don't have to follow any of these rules if you don't want to, but if you find yourself in a position where you need to get in an NT person's good graces, this is what they're expecting), and I run the teen group while someone else runs the parent group. Last semester I actually had to have someone cover for me in the teen group and go in and have an intervention for the parents because they had run themselves into the ground with misery and hopelessness through talking to each other. They had all convinced each other their kids were never going to drive, go to college, live on their own, have romantic partners, etc. Which is a terrible attitude to take for any kid, but listen, most of the kids in that group were doing way better than I was at their age, so it was seriously skewed.

I came in and told them, "Look, I don't have an autism diagnosis, but I grew up cognitively and physically disabled, here's my experience with executive functioning, sensory processing, social communication, etc." I talked about what worked for me and what didn't, where I used to be, how things changed, what things changed the same, what I could achieve and couldn't (I'm in a PhD program and have a partner of 7 years! But I can't drive and can't live on my own, but that's okay because my partner helps me and we have good public transportation here). I did this to give them some hope, which it definitely did, but what I wasn't expecting was all the questions about, "How did you deal with X? How did you solve Y? What's your experience with Z?" They were particularly interested in executive functioning stuff and how I dealt with that. Also, I mentioned that I had a rat's nest in my hair through all of high school because brushing my hair was too painful and they acted like it was the most relatable thing I'd said all day, and then I got to tell them how I figured out the right kind of comb and gel I could use for my hair to look presentable without causing myself pain.

One of the points I made is that so much of being autistic is struggling to figure how to exist, how to fit yourself into the world in a way that's least distressing and damaging to you. It's hard enough to learn how to just exist as an NT kid. Just take the hair brushing thing: learning to do that and remembering to do that is difficult even when you can pick up any old hairbrush and it's fine. As a (probably?) autistic kid, I had to go through twenty brushes to find one that didn't make me cry. But because I went through all of that, I had valuable insight for parents on what to try for their kids, how to search for the right way to do things that causes the least amount of distress. Afterwards, they were so, so grateful, and many of them told me multiple times throughout the semester how helpful that conversation was. I'm not saying that I'm this amazing repository of knowledge on the autistic experience, or that anyone is--just that parents often act like the perspectives of autistic adults aren't really relevant to them, when really they are quite possibly the most helpful resource they have. We were all kids. We all had to figure out how to exist in the world. Some of us have shitty memories, but we at least remember some of that journey. There are so many places you can get perspectives from other parents, and so few that you can get it from autistic adults. I wish, at the very least, parents would value that when it comes up, instead of immediately jumping to, "Well, here's my experience," without even thanking autistic people for sharing ours.

I went back and forth on including myself in the autistic 'us' but then I re-read what I wrote about the hairbrushing thing + a bunch of stuff I deleted about having sensory meltdowns until 18, having zero friends in high school, being unable to order food for myself at a restaurant, causing significant problems for myself at work due to not understanding sarcasm, etc. etc., and was like, yeah, I probably count as an 'us.'
posted by brook horse at 8:27 AM on August 2 [42 favorites]


Re: Neurodiverse experiences that seem not to fit the narrative.

I think one of the side effects of allistic and neurotypical people coming into a conversation is that it makes autistic and neurodiverse people close ranks. Language gets a lot more rigid and sure, as a defensive reaction against people who are dismissive, mean or condescending. There becomes less room for a nuanced and varied conversation. (As a side note: this also happens in conversations about POC topics. There’s a wide range of experience, but when white people come in and are exhausting, all that nuance collapses conversationally because it just isn’t safe.)

I am often on the outside of that closed ranks phenomenon. I don’t think it’s because other autistic people don’t accept or appreciate my viewpoint. I very much see that it’s a reaction to outside pressures. And frankly, my discomfort with “breaking rank” doesn’t have anything to do with other autistic people enforcing that on me.
posted by stoneweaver at 8:30 AM on August 2 [9 favorites]


I am very surprised about the deletion in the thread that just happened. It really is ironic that allistic people are the ones who aren’t reading the room and are doing the sorts of talking over and not listening that autistic people are accused of. That comment didn’t read as “trash talking” to me at all. It read as a fairly mild and wry pointing out. I’m pretty disappointed to see it deleted.

It gives me a lot of pause about whether it’s possible to have a conversation between/about autistic people that’s moderated by allistic mods.
posted by stoneweaver at 8:43 AM on August 2 [6 favorites]


...because that's all I've ever wanted, was kindness like that, not someone telling me I'm deficient because I cry sometimes, or get anxious riding in the car, or over any number of other things.

Marie Mon Dieu, I just wanted to tell you that you are not deficient. I don't care what any medical professional has told you in the past: IT IS OKAY TO BE SAD SOMETIMES. That is NOT abnormal in ANY way. It only becomes an issue that might need examining if the sadness is getting in the way of everyday activities of life. There is not a single person on this earth who is happy at all times. If someone tells you that, they are lying.

Heck, I cry when I'm angry! LOTS of people do! It's not great, because then I deal with puffy eyes all day and I get mad at myself for being so mad that I cry, but it's so totally normal! I cry at commercials that tug at my heartstrings. I cry at movies. And yes, I have major depression but NOT BECAUSE I CRY. I feel things, deeply. And I am very, very fortunate to have had medical professionals tell me that it's okay to feel things deeply. It's okay to cry when things are sad or when something bad happens to your favorite character in a movie or when you're scared at the doctor.

So, from one internet stranger to another: you're okay. You're really, really okay.
posted by cooker girl at 8:44 AM on August 2 [14 favorites]


It’s the same type of shutting down the voices of the people actually part of the group being talked about that was pointed out in the POC MeTas. I need to re-evaluate my participation here.
posted by stoneweaver at 8:49 AM on August 2


That comment didn’t read as “trash talking” to me at all. It read as a fairly mild and wry pointing out

I was inclined to leave it until a second comment escalated, and that made it clear that it was going to take the thread in a direction that we absolutely cannot have. That's often the problem with wry/sarcastic/jokey comments - they're fine in isolation but they often get taken as permission to amplify and escalate the sentiment.
posted by restless_nomad (staff) at 8:49 AM on August 2 [3 favorites]


The recent ABA/autism post on the blue that people are discussing: "Autistics Speak: Nothing About Us, Without Us", posted by ruetheday.
posted by diss track able at 8:50 AM on August 2 [4 favorites]


spaces dedicated to talking about groups where their participation is explicitly unwelcome is perhaps not a good fit for metafilter.

Not sure if this was directed at me, but just in case, I'd like to be very clear that I am not at all in favour of excluding autistic people's perspectives from any thread, ever. Unless by "groups" you meant the parents?

I would also like to add that many parents of neurodivergent kids are themselves ND due to the strong hereditary link. So I don't think it's a completely fair comparison with men butting in about sexism. I do agree that that kind of dynamic can exist, though, which is ironically why I value having a range of perspectives on here, where people are much more reasonable than pretty much anywhere else online.
posted by randomnity at 9:07 AM on August 2 [1 favorite]


I’m out. Y’all can’t seem to figure out how to moderate without shutting down the voices in the group actually being talked about. It’s exhausting, and I am done trying to carve out space. If you send me memail to get in touch, include an email address as I will be seeing it in and responding through email.
posted by stoneweaver at 9:09 AM on August 2 [3 favorites]


I would also like to add that many parents of neurodivergent kids are themselves ND due to the strong hereditary link. So I don't think it's a completely fair comparison with men butting in about sexism.

Yeah, I should clarify I was talking specifically in the context of neurotypical parents with neurodivergent kids. It's a very different context with neurodivergent parents, though in my experience they don't tend to be the people who behave in this particular manner in discussions about autism. That said, being neurodivergent and not autistic can still bring up some similar problems--I'm not going to give ND parents a completely free pass, same way I don't give myself a pass on ND topics that don't relate to my experience.
posted by brook horse at 9:15 AM on August 2 [6 favorites]


Never lose the people that stir up shit do we. Fuck.
posted by kanata at 9:17 AM on August 2 [2 favorites]


Y’all can’t seem to figure out how to moderate without shutting down the voices in the group actually being talked about.

It's difficult. We can carve out space, but not space for everything. We can accommodate people as much as possible, but sometimes those accommodations turn out to be actively harmful for other groups. We want to allow neurodivergent people room to express themselves in ways that feel safe, but what do we do when *other* neurodivergent people respond to those expressions with hostility and anger?

I know a lot of people have a lot of righteous rage about a lot of things - five gods know I do myself - but when that rage gets pointed at other human beings who are also trying their best and dealing with their own struggles, the community doesn't learn anything and can't come together. It gets wedged apart, instead. Any given Mefite isn't The System and there's a vanishingly small chance that they're the one that was the cause of that rage, rather than being a symbol of it. If people are going to feel safer here - which is a desire I've heard in this thread ever and over and over - we all have to figure out how to feel that rage without setting each other on fire.
posted by restless_nomad (staff) at 9:22 AM on August 2 [6 favorites]


Not sure if this was directed at me, but just in case, I'd like to be very clear that I am not at all in favour of excluding autistic people's perspectives from any thread, ever. Unless by "groups" you meant the parents?

It was! And I wasn't talking about parents. However, to centre (or even really allow) a lot of "autism parents" perspectives would effectively require shutting out a lot of autistic voices, or having an acrimonious fight masquerading as a thread - I mean, we can barely have a thread literally entitled Nothing About Us Without Us without it becoming that kind of fight, because of how problematic and persistent a lot of those perspectives are. Since we're not big on huge fights on mefi in general, you're kinda left with this maybe not being the best space for those discussions.

In a way, I see a lot of parallels with how trans issues have been handled here over time. Only once the awful, hateful shit, whether cluelessly well-intentioned or not, was excised without prejudice, and a greater degree of weight being placed on actual trans perspectives, did any real nuanced discussion come about. Things are still a good way from perfect, but if you want good, enlightening and fulfilling discussions, you need to not have it be two sides slugging it out. And as long as you have people whose experience and contact is second-hand being given a much air for their theories and feelings (ask me about all the "my child is trans" or "my friend is trans" perspectives that were part of driving a lot of conversation downhill, and trans mefites off the site) as those directly affected, it'll be a lot of noise, and little meaningful signal.
posted by Dysk at 9:29 AM on August 2 [14 favorites]


I dunno if this is against the rules or not, but if anyone needs to vent about ableism or neurodivergent stuff, they're welcome to come to my inbox. I can't guarantee I'll always have the time/energy to respond, but if you need a space to get out your anger, I'm here to listen. Some days I might not be able to do more than "I hear you" but I know at least for me it can really help to just be able to express how much it hurts, without having to put yourself in the vulnerable position of potentially getting attacked by others in the thread or having a comment deleted.

If this is in some way not allowed, feel free to delete this comment, mods.
posted by brook horse at 9:29 AM on August 2 [4 favorites]


If this is in some way not allowed, feel free to delete this comment, mods.

Nah, totally, and we are 100% ok with people using the contact form for the same general reason. Sometimes you gotta yell! I get that. But consent on the part of the yellee changes the dynamic a whole lot.
posted by restless_nomad (staff) at 9:31 AM on August 2 [2 favorites]


I am honestly surprised that post made it through moderation. I think it was doomed from the start because while it's very well-written by ruetheday, I don't think MeFi is a good fit for something that is essentially an original essay that uses links for evidence.

(I have nothing to say about ABA specifically; I have no diagnosis so my deviations from "normal" behavior were treated not as "symptoms" of anything but as personal deficiencies.)
posted by capricorn at 9:34 AM on August 2 [2 favorites]


I am honestly surprised that post made it through moderation. I think it was doomed from the start because while it's very well-written by ruetheday, I don't think MeFi is a good fit for something that is essentially an original essay that uses links for evidence.

That's pretty much standard megapost format, isn't it? We've had exactly the same thing with topics as far ranging as (off the top of my head) modern monetary theory and individual 80s/90s rock and pop albums that have taken pretty much that presentation.
posted by Dysk at 9:42 AM on August 2 [14 favorites]


A lot of those are not good MetaFilter posts either.
posted by capricorn at 9:46 AM on August 2


Gently, as the person who was the person who commented with the second deleted comment after the one stoneweaver was pointing to:

The joke I made was along the lines of "man, allistics treat us like this, and they say we have empathy problems." It's probably the oldest joke I know in autistic neuro diversity circles, and perhaps the most powerful because it turns a lot of assumptions about communication and empathy in public discussion of autism on its head. Repeating it there was, in part, an effort to signal community to the other autistic people in the thread; to say, "isn't this fucked up?" and "I see you," in very much the same way I see PoC occasionally go "white people, eh?" and women comment "men are so frustrating." That these three things are treated differently here is a function of the fact that we have a critical mass of women on the site. We do not have a critical mass of PoC and we certainly do not have a critical mass of neurodiverse people.

Without stoneweaver and Homo neanderthalensis, I feel even less safe, more tired, less willing to trust people and try to have those conversations. I feel less able to do the work of holding other people's trauma and meeting in the middle, and more like this conversation does need to be about slugging it out. That's pretty shitty, and maybe that means that my voice shouldn't be here for a while either. Maybe the needs of autistic people who want to talk about these things aren't compatible with Metafilter, and maybe the solution is just to walk away myself. I don't want to trigger a round of people being upset but I have limits, too.
posted by sciatrix at 9:47 AM on August 2 [18 favorites]


Folks, discussions of proper thread formatting need to go elsewhere.
posted by restless_nomad (staff) at 9:49 AM on August 2 [3 favorites]


Sorry about that, restless_nomad, I won't continue the derail.
posted by capricorn at 9:53 AM on August 2


Thanks for elaborating, Dysk. I definitely agree that if we are forced to have (or "center") only one perspective, allistic parents are not who it should be.
posted by randomnity at 10:18 AM on August 2


I have read this entire thread (Thanks, ADHD hyperfocus!) and I keep coming back to the same concern about stated issues with metafilter, moderation, community standards, community behavior and so on.

What is good for one person's neurodiversity is terrible for another person's, because we are diverse.

I will relate with a real-world example - and then at least one MeFi example.

I and Partner are both neurodiverse. (Yo, I have permission to talk about this, Partner is a mefite)

I have ADHD, a number of autism-like traits (I do not believe I have autism, but I do share some traits), PSTD (from a physically/emotionally abusive ex) and some emotional mental health condition on the anxiety/depression scale.
Partner has Generalized Anxiety, some symptoms of Autism (again no diagnosis but he has more traits than I do), Major Depressive Disorder and some food/eating related anxieties stemming from severe childhood food allergies.

One of my PTSD/anxiety symptoms is severe anxiety with regard to silence in stressful situations.
One of Partner's anxiety symptoms is mild mutism.

When I am anxious, I press for discussion, communication, talk to me please keep talking just make noise etc.
When Partner is anxious, he literally sometimes cannot talk.
Forcing him to speak is awful for him. Forcing me to endure silence is awful for me.

While we have come to some mutually manageable coping methods, you can see how either of us demanding that the other cater to our personal needs is harmful, and can cause the other severe harm.

The same follows for certain Metafilter behaviors. Above, a poster mentioned that the mod practice of calling out people by name for certain actions causes them anxiety. And other have mentioned that the same practice reassures them that the mods are actively preventing bad behaviors on the site (for example - victim blaming, people of privilege taking over a discussion, microaggressions) and that by saying "Poster99, this is not acceptable, stop." they can see the mods are working to prevent people who cause some posters extreme anxiety.

So my question to everyone when they are discussing and reading here is - where do you personally draw the line in your personal needs versus the needs of someone else who is neurodiverse?
posted by FritoKAL at 1:19 PM on August 2 [4 favorites]


This thread is an excellent example of how neurodivergent people make me feel unsafe in a thread about neurodiversity.
posted by Jane the Brown at 1:25 PM on August 2 [1 favorite]


Thinking about the parental perspective. People in the hikikomori thread wanted to talk about the people, usually family, usually moms, harmed by the subjects. Parents of autistic kids, usually moms, seem to want to talk about the harm they incur, sometimes by the kid, sometimes by society. That's super valid and I want them to get to talk about it.

At the same time, my experience is being harmed by my family/parents/mom (and hearing many other people's experience with abuse related to MI/ND/disability). I have a lot of distrust for parents on these subjects, but I know that parents, usually moms, face a lot of criticism and skepticism for their decisions already, and I don't want to add to that. So I will sit out threads with parental perspective. Right now that means I'd sit out every thread.

The ask about families' perspectives on adult hikikomoris made me feel a lot of feelings but that was fine because I knew that wasn't a discussion for me. But the ambiguous/catch-all spaces are hard and usually just mean I don't participate but still leave feeling shitty and invalidated.

I also just want to second shapes that haunt the dusk's entire earlier comment. As a bigender person, I've been the woman hurt by a man handling mental illness and I've been the man hurting someone else with my mentally ill behavior (as well as lots of other less clean permutations), I need both of those conversations with people who understand and have the space for it, I understand that they're hard to have together. But I have different spaces where that does happen, and it's been revolutionary for me to see that I don't have to "choose sides," as dumb as that sounds.

(i think i worked on this comment for an hour! jeez!)
posted by gaybobbie at 1:32 PM on August 2 [12 favorites]


Jane the Brown, I'm curious as to why you're feeling unsafe? Please understand that you are under zero obligation to explain, I'm just opening the door if you'd like to discuss it.

I read your previous comment in the thread and found it valuable, even if I might have disagreed with some of what you said.
posted by cooker girl at 2:09 PM on August 2 [2 favorites]


So my question to everyone when they are discussing and reading here is - where do you personally draw the line in your personal needs versus the needs of someone else who is neurodiverse?
posted by FritoKAL

It's boundaries. Everyone has the right to express themself, if they are not urging harm to anyone, but nobody has the right to compel anyone else to listen. Everybody has the right to have needs, but nobody has the right to compel anyone else to meet that need. Everyone has the right to withdraw consent at any time without even having a reason. Nobody has the right to do anything that hurts another person.

So if I need to stim and my stimming hurts you, (perhaps because it is noisy) we have to find a way that I can stim where it doesn't upset you. We don't get to stop me stimming and we don't get to make you put up with it.

The bad is when someone tries to make someone else do something. If I try to silence someone else, or if I try to make someone else meet my needs, or if I try to stop you from being you, then I am the one who is making life worse for others and I am harmful.

I may have to pick between stimming or being present if my stimming upsets you, or I may have to pick between not reading a thread if it upsets me, or being upset, but as soon as I attack you and move from a reasoned and supportive argument I am taking away your safety and your space and your rights. At that point, please ban me.

Anyone gets to have any need, regardless of whether they are neurodiverse or not. If you need cookies, you need cookies and I don't open a discussion about whether you need cookies or not, or how much you need cookies. However I don't have to supply you with cookies either. It's up to you to find your own cookies and not leave cookie crumbs in our shared space. Everyone is respected as unique. Nobody gets to say anything or do anything to others as if they are monolithic. The neurotypical are as diverse as the neurodiverse, but their differences are not neurological.

If one person needs quiet and one person needs background noise then either you find two spaces or you take turns. And if one person freaks out because it is too quiet and begins yelling that doesn't mean they get to prevent quiet, it means that the yelling they do counts as the half the time that is noisy.

If someone is deliberately hurting someone else they need to be stopped. And if someone is hurting someone else but doesn't know it they need to be informed they are hurting someone else. If they don't stop after they know then they need to be stopped by whatever means works, usually by separating them and making sure that the person who is doing the hurting does not get what they want. If they hurt someone to get what they want they must not get it, or they are a bully and the other person is their victim.

Like with any difference you have to calibrate to discover who cares more, and the one who cares less gets to submit to the one who cares more. This is not easy. Both people may care intensely. This is where dividing things evenly with the one cuts-the other chooses rule can be used, but if that doesn't work, then neither gets what they want. Use the King Solomon system to prevent bullying.

Usually conflict between two neurodiverse people comes either when there is a scarcity of resources, or when one person wants to use the other one. We may both want to use the headphones. Or we may both want the last cupcake. We solve that by being fair. But if you want me to lower my voice and I don't want to lower my voice usually the only way to solve that is to separate us, so that either I get to talk loudly without upsetting you, or I become willing to lower my voice in order to get the social time with you because being alone yelling is no fun and it is worth it to talk quietly so I can spend time with you.

Some neuro-diverse are subject to meltdowns. Anyone having a meltdown goes on time out. They do not get to inflict their meltdown on anyone else and they do not have to stay and try to overcome the meltdown and act in pro-social ways.

We err on the side of being kind. Those who fail to be kind and who distress others get increasingly isolated as we avoid them. This is hard for them, but critical for the people who would otherwise be distressed.
posted by Jane the Brown at 2:17 PM on August 2 [15 favorites]



Jane the Brown, I'm curious as to why you're feeling unsafe? Please understand that you are under zero obligation to explain, I'm just opening the door if you'd like to discuss it.

I read your previous comment in the thread and found it valuable, even if I might have disagreed with some of what you said.

posted by cooker girl

People are expressing anger in this thread in a way that feels to me like bullying and people are trying and possibly succeeding in silencing others. I am not comfortable with people who express anger instead of being in leveler mode because I had bad relationships with people who could not turn off their anger and used it to get their own way. I am extremely not comfortable with people who get angry at other people over things that are said, when what was said was not intended as an attack. And I am really, really, uncomfortable with people who get angry at what other people say and declare themselves to have been maltreated, especially when they take past anger and project it at the person they are now angry at as well. "This always happens..." is not a good justification for getting angry at the latest person to do this.

That, to me is not appropriate for a group where we are invited to discuss things. If I don't like what you say, instead of writing a furious retort and demanding you get off the thread, it is appropriate for me to flag, consult with the mods and wait for your post to be deleted. If they don't delete it, it is perhaps appropriate for me to reflect if they mods could be correct for leaving your comment or to quietly let myself out.

I think that this thread, of all threads, is one where raging should be tempered more than most, given how vulnerable so many people with neurodiverse traits are.
posted by Jane the Brown at 2:33 PM on August 2 [16 favorites]


Like with any difference you have to calibrate to discover who cares more, and the one who cares less gets to submit to the one who cares more. This is not easy. Both people may care intensely. This is where dividing things evenly with the one cuts-the other chooses rule can be used, but if that doesn't work, then neither gets what they want. Use the King Solomon system to prevent bullying.

It seems to me like another big part about these discussions is how capable of change people are, and whether someone should change their non-normative need. If conflicts like this keep coming up, there will be pressure on both sides to adapt themselves so that their need goes away and the other one can be satisfied all the time.

I think it's very easy to look at someone else's unusual need and think "you could just change to not need this, see, none of these other people need it" and then feel that they are being disrespectful and unkind by creating demands on you that they could choose to not create.
posted by value of information at 2:35 PM on August 2 [1 favorite]


I don't think people should change their non-normative need. A gay guy should not be encouraged or forced to turn straight. Someone with auditory sensitivity should not be force to pretend they don't have auditory sensitivity.

Why on earth would you think that someone else could or should change? Those differences are amazeballs. They are for celebrating.

However, someone with different needs doesn't get to create demands on other people. Those who love them and cherish them and support them will go a million miles to help them. Those that don't want to... don't have to.

Of course those who don't go the million miles to help you are likely to be lousy teachers, or school systems, or people... but they don't have to be good teachers or school systems, because honestly, they are probably incapable of becoming good teachers or school systems anyway.
posted by Jane the Brown at 2:44 PM on August 2 [1 favorite]


However, someone with different needs doesn't get to create demands on other people. Those who love them and cherish them and support them will go a million miles to help them. Those that don't want to... don't have to.

But we all kind of both create demands on those around us, and are subject to their demands all the time. That is an unavoidable reality of community, society, and sharing space and existence with other people. We do it all the time on mefi, too - there are guidelines and expectations we are all expected to adhere to, all of which, when you really boil it down, are to accommodate the people around you (and thus stimulate good discussion). Women making demands of men is how boyzone was (and is) gradually combated. Trans people making demands of cis people is how trans threads got to be less awful. All of these demands were partly of the mods specifically, but mostly the userbase as a whole, enforced by the mods.
posted by Dysk at 2:52 PM on August 2 [11 favorites]


The problem arises when person A's need directly impacts person B'd need in a large community.

Several people here in this post (and therefore we're assuming to be neurodiverse) are angry, and rightfully so, because they've been hurt by (probably) neurotypical people. Several people here (and therefore we're assuming to be neurodiverse) are deeply anxious about that anger and how it is expressed because they've been hurt by abusive people who express anger in the exact same manner as the rightfully angry people.
posted by FritoKAL at 2:53 PM on August 2 [4 favorites]


The problem arises when person A's need directly impacts person B'd need in a large community.

Absolutely agree, and that's a difficult balance to strike. I'm just concerned that all the demands that are placed on all of us here with the status quo are somewhat erased in a conception that says we can't place demands on each other. That too me sounds like we can't agitate for any kind of change, or seek to address actually doing the work of balancing competing needs and demands, especially where the status quo has a rather one-sided set of expectations and demands at present.
posted by Dysk at 3:00 PM on August 2 [3 favorites]


...Maybe the needs of autistic people who want to talk about these things aren't compatible with Metafilter...
posted by sciatrix

I'm neurodiverse, I want to talk about these things and I am finding them fully compatible with most of Metafilter. This is one of the comments that made me feel excluded here.

I think, reading and looking at what is being said more closely, the divergence here is that Sciatrix and some of the other mefites on this thread are neurodiverse people who are angry at neurotypicals, and they appear to me to be defining neurodiverse people as by definition being angry at neurotypicals. Whereas I am a neurodiverse person who is not angry at neurotypical people so this assumption excludes me and defines me as other than I define myself. I find neurotypical people beautiful and fascinating and some of them have been very kind to me, and supportive. However, I have been badly hurt by three or four people in my life and at least two and probably three of them have been neurodiverse. Of course the three or four people who have been the greatest support and made me happiest are also neurodiverse.

So I am more likely to be afraid of and distrust neurodiverse people who make sweeping generalizations or who demand things of me and define me in ways I disagree with than I am of neurotypical people, because I have always been able to extricate myself from the neurotypical people who might have been harmful to me but I was not able to extricate myself from the neurodiverse individuals who did me harm.
posted by Jane the Brown at 3:12 PM on August 2 [12 favorites]


If you ever read any of my comments you probably already figured out I am "neurodiverse" or whatever. I will not be self-identifying any further than that.

It honestly never occurred to me that this site was ever intended to be a place where my needs, whether as a neurodiverse person or otherwise, would even be considered, let alone catered to. I just never picked up that vibe here.

But like, good for y'all for pushing for such a thing. I'm cautiously optimistic. As shapes that haunt the dusk (i think) mentioned: I also think it would be cool to go into any thread about something I identify with and find that a group i am a member of is ACTUALLY NOT being shit on broadly. One day maybe.
posted by some loser at 3:21 PM on August 2 [5 favorites]


Jane the Brown, I really enjoy reading your comments here, especially your Ask answers, especially when they take an interesting path I hadn’t even thought about.
posted by sallybrown at 3:25 PM on August 2 [6 favorites]


"That too me sounds like we can't agitate for any kind of change,"

No, this is "Yes, lets make change but if we make a positive change for a fourth of our group that does active harm for another fourth, we've changed nothing and made life worse for our own people in our ignorance"

I've never felt so close to hitting the 'close account' button in my entire time here as I do after reading this thread. The amount of 'well my issues are paramount and I won't even pause to consider anyone else's because ugh, anyone who needs something different from me or acts differently from me must be one of those icky neurotypicals'
posted by FritoKAL at 3:44 PM on August 2 [5 favorites]


I think, reading and looking at what is being said more closely, the divergence here is that Sciatrix and some of the other mefites on this thread are neurodiverse people who are angry at neurotypicals, and they appear to me to be defining neurodiverse people as by definition being angry at neurotypicals.

I am a little frustrated that it feels that you are putting words in my mouth here. I am not defining "neuro diverse" to mean anything of that sort. I would actually characterize this conflict as being about neurodiverse people who are tolerant of certain inescapable behaviors that allistic people tend to perform around autistic people vs. neurodiverse people who have lost patience for certain things.

Many of these things are driven by dynamics specific to autism and, to an extent, ADHD. Neurodiversity started as a movement of autistic people, and while the movement has been broadened (and in many respects that is a good thing!) I think it may be a term that is too muddied to be clear here. So I am going to focus on autism here. Jane, to be explicit, I am placing you into the same category as me, not defining you out of it, even though I do not remember if you have offered a different identity. The needs and history and culture of spaces focusing specifically on autistic people are different from those focusing on mood disorders, and I want to explain where I am coming from, even though mood disorders and autism are overlapping categories (and neurodiversity includes even more groups.) It is hard for me to separate neurodiversity as an identity from the struggles of autistic people, because it is an identity that began as an explicitly political idea. In this respect it is very similar to identities like queer.

Jane, I am not angry at you. I have been specifically angry about things that this discussion had previously asked not to focus on, which is the tendency to divert all discussion about autism to be about autistic children as parented by allistic adults. I do not hate allistic people and am frustrated that I cannot even express frustration with allistic patterns when allistic people are apparently allowed to view autistic children as dogs to be trained, or worse than dead children, or any number of terrible things, because such children are inconvenient to listen to. (I have not exclusively been hurt by allistic people either, and it frustrates me to see myself and experiences characterized this way.)

What I want for a discussion about autism is a discussion where the needs and perspectives of autistic people, not our parents, is the center of the discussion. This does not mean that allistic people should never comment, much less that parents of autistic children should never comment (because I am acutely aware that these are not synonymous categories).

Regarding anger, I would like to note that people, especially allistic people which to my knowledge includes all mods, often do not realize that someone feels strongly about something if that person does not overtly perform emotion. I have learned that if I am too good at controlling my emotional responses, people who love me will not bestir themselves to go out of their way to stop doing things that actively hurt me, including things like lecturing me that other people will think badly of me and reject me for being my authentic self. So I feel that being asked to not share what those emotions are is like asking me to sit and let people who are hurting me continue to ignore that fact. This feels to me like repeating my trauma, which is heavily based around people not liking me or appreciating me as a whole person, but telling me they love me and so I am not allowed to feel badly about that. This is not a trauma unique to me.

The specific things I expressed strong anger over are behaviors and ideas that have been used to oppress and hurt autistic people by allistic people. Neurodiversity as a political movement is something that was explicitly organized to push back against those behaviors and ideas, and the specific slogan of the thread I was incensed about is very specifically a slogan repudiating the notion that allistic parents are the best and most important authority on the needs of autistic people.

I want to get into a more fine tuned discussion of conflicting accommodations, which FritoKAL mentioned up thread, but I don't feel safe enough to do so right now. I had intended to comment tomorrow, after a longer break to let people talk without trying to overwhelm people. But I am feeling even worse and more like I, and the perspective I am bringing, is unwanted and unhelpful. That isn't productive. As stoneweaver brought up above, I am feeling like I need to close ranks against attack, and that makes it impossible for me to relax enough to talk about the edge cases where needs conflict.

I do not feel optimistic here.
posted by sciatrix at 3:54 PM on August 2 [17 favorites]


No, this is "Yes, lets make change but if we make a positive change for a fourth of our group that does active harm for another fourth, we've changed nothing and made life worse for our own people in our ignorance"

I've never felt so close to hitting the 'close account' button in my entire time here as I do after reading this thread. The amount of 'well my issues are paramount and I won't even pause to consider anyone else's because ugh, anyone who needs something different from me or acts differently from me must be one of those icky neurotypicals'


If this is directed at me then I don't know what to say - I have never said or intended to imply any such thing, and apologise if I have come off that way. I fully agree with considering balancing needs with any potential changes, I just think it is important to consider the effects and demands of the existing arrangement as well as those of any potential changes. My concern was not with what you were saying, but with the idea that we cannot make demands of each other, because that strongly implies that the demands that we are all currently placing on each other (indirectly, via guidelines, site norms, and modding) are somehow invisible or non-existent. We cannot avoid placing demands on each other - it is precisely how those demands are balanced that is the thorny issue to discuss. But that requires considering the demands and pressures of the currently existing site norms, guidelines, and modding practices, as well as the pressures of any potential other approach.
posted by Dysk at 3:57 PM on August 2 [2 favorites]


I never said or intended to say that we should not agitate for change, but you sure as heck implied that I did. So either we're both assholes or both talking around each other and I'm pretty sure it's that second one but this entire. thread. has been people talking around each other, so I'm not sure pointing it out now means very much.
posted by FritoKAL at 4:03 PM on August 2 [1 favorite]


Regarding anger, I would like to note that people, especially allistic people which to my knowledge includes all mods, often do not realize that someone feels strongly about something if that person does not overtly perform emotion. I have learned that if I am too good at controlling my emotional responses, people who love me will not bestir themselves to go out of their way to stop doing things that actively hurt me, including things like lecturing me that other people will think badly of me and reject me for being my authentic self. So I feel that being asked to not share what those emotions are is like asking me to sit and let people who are hurting me continue to ignore that fact. This feels to me like repeating my trauma, which is heavily based around people not liking me or appreciating me as a whole person, but telling me they love me and so I am not allowed to feel badly about that. This is not a trauma unique to me.

Wow, that's a powerful paragraph. I am one of the people who is kind of anxious about public expressions of anger but this makes me reconsider how I feel about it.
posted by value of information at 4:06 PM on August 2 [9 favorites]


Jane, also enjoying your comments. Lots to think about here.

I'm certainly not angry with the NT world, but I can't deny that it has forced me into some very toxic patterns of behavior over the years. One of the most important aspects of coming to terms with my condition has been recognizing this and facing up to it. Meanwhile, the therapeutic options available to me want me to perpetuate them so that I can go about business as usual in a dysfunctional system that I don't know how to negotiate any more. I can't speak for others in this thread, but it's the reason why things like self advocacy, setting boundaries and knowing how to respectfully push back or step away from situations that feel harmful are very important to me, even though it might inconvenience other people in the short term. (It's also why I don't engage much on the Internet very much these days.)

This is where the validation comes in, the idea that while it's perfectly OK to be autistic, we need an alternative playbook to help us moderate our behavior, because the rules are all different for us. And I honestly don't know how to resolve this, because it took me a long time to reach this insight, and it doesn't fix anything. Like everyone else here, I'm still faced with the problem of how to exist in a world that's completely indifferent to my needs. But I must say that acknowledging it for what it is has helped enormously in managing it day to day, while misdirected rage never did anyone any good.
posted by Elizabeth the Thirteenth at 4:06 PM on August 2 [4 favorites]


I never said or intended to say that we should not agitate for change, but you sure as heck implied that I did.

No, I was explicitly agreeing with your point, and clarifying how it related to my previous comment directly above yours, which I read yours as possibly a response to. I can understand the confusion, and no doubt that is in large part down to my failure to communicate clearly, but please understand what I was actually trying, if unsuccessfully, to say.
posted by Dysk at 4:09 PM on August 2 [2 favorites]


This thread has eaten up most of another day for me. I'm not going to edit down my run-on sentences as much as I normally do because my continued inability to make room for other things in my day is really getting frustrating. I'm sorry if I say something that is upsetting to you or if some of this isn't very clear.

I got diagnosed with ADHD recently. I've been meditating for a month. It goes on top of my chronic insomnia and my maybe-depression-maybe-dysthymia-(which isn't a thing anymore but I can't seem to ever recall the new name)-maybe-reasonable-based-on-a-good-understanding-of-facts-existential-dread; probably an explanation for some of the latter, though initial medication-based treatment for the ADHD has decidedly not impacted my depression or its impact on my ability to concentrate, but my response to ADHD meds does at least indicate that I do have it. At any rate, the ADHD explains a lot, combined with the fact that I was very... accomplished in school for whatever reason and thus it mostly went unnoticed. I might have other issues too, I dunno. I saw my psych for the second time two days ago and spent a big chunk of yesterday wishing I'd just asked him for an anti-depressant to go along with my ADHD med dose increase.

In particular, one of my most intense ADHD symptoms, as far as I can tell, is rejection sensitive dysphoria, which shows up in all kinds of ways but among other things makes me feel like I'm being a burden on people if they don't pretty consistently show enthusiasm for my company or thoughts or presence. Like I'm fine in casual conversation with acquaintances but I have almost no close friends anymore and feel pretty incapable of connecting with anyone but my wife (I've never put any expectation on her that she maintain my relationships with other people for me, as she's also neurodivergent and has a hard enough time managing her own; we each deal with our own family and friends and are pretty equally bad at doing so). Like PhoBWanKenobi I've now realized the rejection sensitive dysphoria also has a pretty big impact on how I've interacted with the site. If I say something I later realize was ill-thought-out or ignorant, I have a difficult time continuing to interact with a thread, or if I just have a sufficiently nasty interaction with someone. To the extent I can control this response, it takes a prodigious amount of energy and I can usually only manage it when I realize I'm showing cis-white-male fragility and sometimes not even then.

Besides my wife, this site, and a general desire for increased justice and reduced suffering in the world, the only things I really care strongly about anymore are tabletop gaming (most of the online communities of which are pretty miserable and rife with abuse and strife, and I don't have a regular group that can meet easily) and my writing project. And the combination of a better understanding of rejection sensitive dysphoria and its role in my behavior and emotions, and the past month of activity on this site has also left me frightened that I'm never going to be capable of actually having that writing be, like, something I actually put out there and promote, particularly on this site, because I'm really concerned that a correct but cruelly phrased criticism about something that is hurtful and problematic in my work will destroy my ability to ever write the fucking thing again, particularly if it's about something I wouldn't be able to fix without a major rewrite, if at all, because there are some things I know are kind of not perfect but they're... they're set in my mind, and I don't think I'll be able to change them without needing to start from scratch, if I could even then. Writings not easy for me, it's weird alchemy and I only have so much control.

I'm really dismayed by how these threads keep going and how many people keep leaving, and how many people, not just in this thread but in the portions of the PoC and state of the site threads I've read, seem to just keep talking past each other and interpreting other's comments in negative lights. I was really unhappy with how I came off in the last state of the site thread even if many people agreed with me, and I have a real fear I made a major contribution to that thread going so badly after my last comment, which I only know because other people keep mentioning it, as I haven't been able to bring myself to go back and read the rest in whole. The more this happens the less I want to keep actually commenting on this site for fear that I'll keep either accidentally hurting people or being... I can't find the word I want so I'm using "maliciously" even though that itself is too negative, probably in exactly the way I'm talking about so I'm sorry I can't find the better word--my fear of being "maliciously" misinterpreted, and I can't tell the difference between those mostly in text, even here. I'm almost too credulous and try to take people at their word unless I've already discovered a good reason not to about them.

I really appreciate the things that shapes that haunt the dusk has said in this thread and on the site in general; they are things, in particular, I have felt about this site a lot, written more cogently than I have any confidence I could. I appreciate sciatrix's a great deal as well. I have a terrible amount of anxiety about being misinterpreted particularly after the way I came off in the state of the site and I feel like that is happening to her sufficiently it's giving me a little bit of knock-on anxiety right now. I find both valuable voices in this community and will be saddened but understand if they decide they need to par back their engagement or leave altogether. Indeed, I'm already saddened by PhoBWanKenobi being around less, by Fizz taking a break and by many other people I can't possibly take the time to think of right now (I'm so sorry) because otherwise I'll be here forever and my wife is on her way home from work so I want to wrap up. Gods how did this get so long.

I increasingly am thinking I may need to take a break myself. I lose so much time to hyperfocusing on Metafilter threads. I am worried about being anchorless and not knowing how to parse the world without this site, but, particularly if voices I respect keep leaving or taking breaks, it might be worth it to start being a hermit if I can start writing again. And stop feeling like it would probably be about as helpful to the world for cis-white-male-American me just drank myself to death as fast as possible before climate change or fascists can get me as it would be to keep working on my project. Like, maybe an anti-depressant might do that too and maybe I will need to do that in the end anyway, but maybe it'd be worthwhile to see if not reading Metafilter where the sorts of things shapes that haunt the dusk and Pogo_Fuzzybutt talk about in this thread happen a lot would help me not feel that way.

I dunno. Not using Metafilter will feel like not being able to sleep in my own home. I don't really know what to do about this place anymore. Gods this is so long sorry for the text wall. I always do this. Been working on this for an hour and a half and this is the mostly unedited version.
posted by Caduceus at 4:54 PM on August 2 [15 favorites]


Forgot some username bolding and missed the edit window. Sorry about that, too.
posted by Caduceus at 5:02 PM on August 2


My experience is directly opposite to yours, Sciatrix. In my experience people who perform anger have been generally doing so in order to be intimidating, and to make it impossible to discuss things. Anger to me is what people do when they know they are in the wrong but are refusing to stop hurting someone else. It has never been necessary for me to perform anger to get people to listen to me, instead it has caused them to counter attack, or to withdraw. I come from a family where once someone starts yelling or sounding furious the response is for everyone to run away and it turns off communication.

I very much appreciate your post communicating with me directly and responding to where I quoted you. I am not trying to put words in your mouth. I know I say things and get misunderstood, and I absolutely accept that I am probably often misunderstanding you. What I meant to say is that this is what I understood from the sentence fragment which I quoted, not that I believed that was what you were trying to communicate. This is what I heard when you said that, not this is what you were saying.

I have also actually never encountered a thread about autism spectrum which was hijacked by the parents. My parents never gave me any grief for being autistic. So far as they were concerned it wasn't noteworthy. In fact, once my mother found out that autism ran in the family, she used it to justify her own rather unfounded belief that we were all unappreciated geniuses. I did once buy a couple of books which were advertised as being intended for people who have autism spectrum, only to discover that they were in fact recycled course notes for people who were going to be working with children on the spectrum, and entirely useless, but that is the closest I have gotten to your experience.

I am deeply, deeply threatened by the inclusion of mood disorders in the understanding of what it is to be neurodiverse because people who had mood disorders who may or may not have been on the spectrum have been the source of much unhappiness in my life; I have also recently been informed several times and in different places that women who are on the autism spectrum always develop mood disorders as a result of PTSD, therefore I am not on the spectrum because I don't have a mood disorder. This has NOT been said to me here on Metafilter, but in other circles where people with strong mood disorder traits are demanding accommodations, but mostly demanding lots and lots of sympathy and attention. You know how it is, I expect, when there is a chat room that gets hijacked by someone who is going through an emotional storm who can't stop talking about how upset they are and soliciting emotional support for it. Again, this hasn't been here, but some of my other haunts have had people hogging bandwidth in an effort to deal with mood disorder distress. I am not saying anyone here is doing that here, nobody is, but trying to explain some of my anxieties. After reading the post you addressed me in, I am considerably less anxious because you expressed where you were coming from very well and your anger does not frighten me so much.

I grew up in Lesbian commune but that was a long time ago - all the men in that circle were dying, to give you an idea how long ago that was. I think one reason why I feel excluded and silenced by the people on the spectrum here is that my experiences appear to have been so different than most of you. Once again, I am the weirdo on the fringes... I am guessing that many of the other people on the spectrum came from families where they were pressured to do things like stay in school. I dropped out in grade six, when I was eleven. This, and my age, and the sheer number of family members who were like me means that I was never pressured very much to try to meet expectations that were impossible and damaged me in the attempt to meet them. My mother, I remember was annoyed when I went out and bought a bra. But she gave me a look and disdained to say anything about it, perhaps constrained by the fact that I had developed into a triple D and had been in considerable pain from the bruising when they bounced. Fine, her attitude was. Be like that. I'm not going to give you the gratification of saying anything. That is so far from what the other autism spectrum people on this thread and in this group say about the pressures they have been under that I don't think I will ever be able to understand. Well, if you don't like how they treat you, why didn't you run away from home? That's what we did when school became too hard a slog as kids...

I know that I am missing something enormously - the pressure to conform to neurotypical standards. I never had it from my family. My spectrum experience seems to be different. And yet discovering that the spectrum existed and that I was on it answered so many questions about why my family and my friends and I were so different.

Why do I still play with dolls? An autism spectrum thing, apparently. Why do my friends write enormous long imaginary histories, or invent languages? Autism spectrum thing. Why do noises in the background completely turn off my ability to process thoughts? Autism spectrum thing. Why do I get a migraine if I look up at the sky for forty seconds without wearing sunglasses? Autism spectrum. What's with all the singing? It's called stimming, and it's an Autism spectrum thing.

So why do I not identify with the other ND people on this site? It may be a cultural thing. Maybe most of you were born to families that abused you. Mine neglected me. But just as your greatest strength is also usually your greatest weakness, maybe the fact that when I was eleven years old I became the person who started buying the family groceries because nobody else could be arsed to do it, means that I also never had to do anything that I didn't have enough intrinsic motivation to do. I learned to buy groceries because if I didn't, I didn't have anything to eat until I did. There was no immediate significant motivation like that to encourage me go to school. In fact, one reason why I didn't go to school was because I had to wake my mother up and get her to go to work or there wouldn't be any money for me to buy those groceries.

Another reason why I may not be as troubled by the problems that being on the spectrum has brought me may simply be that I am Canadian and there is a working security net. If I end up unable to find anyone to hire me someday or if the side effects of sensory issues makes it impossible for me to work, I should still be able to afford ramen noodles and be able to go to the public library.

You know what's missing from this thread? How fucking fantastic it is to be on the spectrum. Yeah, those migraines suck. Not being able to do so many things everyone else can do sucks. But all those neurotypicals don't get the fun we can get. I can find some topic, get fascinated, spend hours reading on it, write six hundred pages on it just because I think it's cool and be blissed out while doing it. I can invent a new language, six thousand word vocabulary, never show it to anyone (why would I?), and have a ball doing it and end up pretty much understanding the point of grammar, how it works and why. I can spin around and around and around and around and fall down laughing because it feels good to do that. I can do all the weird shit, the stuff that neurotypicals don't do.

I don't think you guys experience being on the spectrum the way I do. I hope you do. I hope some of you find echolalia soothing, or stimming relaxing, or just get to be blown away by how pretty all those glittery lights and scintillation are when your vision goes wonky. But it doesn't sound like you do.
posted by Jane the Brown at 6:21 PM on August 2 [18 favorites]


Hey Jane the Brown, I really appreciate you sharing your experience. I have two comments related to what you said.

One, I also share the experience of neglectful parents, who never pressured me to conform more than a vague worry of, "She really doesn't have any friends, does she?" You're not alone in that experience; many undiagnosed, or diagnosed-in-adulthood autistic people have had that. It is much easier for me to interact with parents, because when a parent says, "I want to help my kid," I hear: you want to give them love and support, like my parents never did! But other autistic people, whose parents have tried to "help" them their whole lives, hear "I want to control my child." And so, because of those different experiences, we react very differently to parents in conversations about autism. Still, I can appreciate the anger autistic people who grew up that way experience, because I grew up queer in a homophobic household--I know how deeply painful and rage-inducing it is to have your parents force you to conform, even though I didn't experience it in that particular way. So I definitely hear you on having a different experience from many autistic people, but I also appreciate the trauma many autistic people have experienced at the hands of their parents, and the anger tied up in that.

Two, I can only speak definitively for myself, but I absolutely find being on the spectrum fantastic in many ways. I love how precisely I can differentiate and describe textures, I love the complex world I've spent 10+ years building in my head and still haven't gotten tired of, I love being able to talk for hours on one topic and also being able to listen for hours to someone else talk on one topic, I love being able to hyperfocus and bang out a whole project in a whole day where I do nothing else but this thing I enjoy, I love repeating some of the same words or phrases over and over and over, I love that my partner knows that when I just randomly say "It's Christmas!" in the middle of July that means I'm happy, I love that I can buck social expectations and make things better just by not realizing we're SUPPOSED to do things one way, I love the perfect way I lay in bed to squish my chest just right, I love all the different interests I have that I can't keep up with, I love pacing, I love rocking. And I suspect many people in this thread have plenty of things they love about being autistic--the neurodiversity/autism acceptance movement is kind of about that. But you're right that we've spent a lot of time in this thread talking about what's hard for us, and that may come off as sounding like we don't like being autistic--but at least for me, and I suspect others, that's not the case. We just hate that other people mistreat us for it, or don't accommodate our differences.
posted by brook horse at 7:01 PM on August 2 [21 favorites]


In my experience people who perform anger have been generally doing so in order to be intimidating, and to make it impossible to discuss things. Anger to me is what people do when they know they are in the wrong but are refusing to stop hurting someone else.

I'm really having a problem with the implication that it's not possible to express anger without it being abusive. Many neurodivergent people are angry due to how we've been treated by a world that's not set up for us and which doesn't seem to care about our wellbeing. Being told that it's inappropriate and harmful to express this at all seems like more silencing.

[this comment is now on round 8 or 12 or something like that of revisions so I'm just going to post it]
posted by Lexica at 7:22 PM on August 2 [24 favorites]


I find it kinda hard to say whether I like being on the spectrum - it's just part of who I am? I wouldn't be the same person otherwise. It's just a value-neutral fact. It means there are some things that I am good at, and some things that I'm not. I just wish the world weren't set up so that my deficiencies get in the way of deploying my talents and abilities for money. Life is hard when you're poor, and when you can do whatever work tasks just fine, but struggle to not fuck up navigating workplace politics and power dynamics, nevermind customer interactions. Give me a set of clearly defined tasks, and I will hyperfocus until they're done. Ask me to socialise, or give me unclear instructions, and I will kind of panic and probably do the wrong thing. And my experience is sadly that nobody really wants to employ that combination.

I get by with a mixture of freelance work (translation, editing, proofreading - things that can be done over email) and occasional temping (and covering holidays at the local recording/practice studio), and my partner's income is the bigger contribution to the household budget.

So I don't see it as a positive or negative thing in itself - just a thing, like being tall, or being right-handed. It's indirectly negative though, in that it makes it difficult to keep a roof over my head, and food on the table (though less so than it used to), which is entirely because of a whole bunch of norms not even directly related to actually doing work, but to meeting other expectations in a workplace. So it's hard to get too "fuck yeah this rules!" about it. Probably wouldn't feel that way if I could find my way into a more comfortable - and stable, not least - niche in life.
posted by Dysk at 7:30 PM on August 2 [4 favorites]


In my experience people who perform anger have been generally doing so in order to be intimidating, and to make it impossible to discuss things. Anger to me is what people do when they know they are in the wrong but are refusing to stop hurting someone else.

It's also often the reaction when people are being hurt, and the people hurting them are refusing to stop. Not for everyone, obviously, but anger is not an uncommon reaction to being treated unfairly or badly. Not all anger is justified and productive, but nor is all anger is unjustified and counterproductive.
posted by Dysk at 7:32 PM on August 2 [6 favorites]


It is much easier for me to interact with parents, because when a parent says, "I want to help my kid," I hear: you want to give them love and support, like my parents never did! But other autistic people, whose parents have tried to "help" them their whole lives, hear "I want to control my child."

....ohh. Huh. That is so dead on I don't know why it didn't occur to me at all. Sometimes I forget that being raised by wolves may have altered my perspective on certain things. If anything I could have used quite a bit more pressure to conform in things like say, going to school without a nest of matted hair. I guess there were some hidden upsides...

This relates to why I do not usually participate in neurodiversity-related threads, actually - perhaps because I've never been pushed by my (non-NT) family to conform, I do not feel particularly disadvantaged or unhappy about the way my brain works or how I fit into the world. I don't fit in well socially but I have come a very long way since childhood and now I can mask enough to not stick out like a sore thumb. I have learned most of the scenarios that cause me distress and have gotten better at just saying no or figuring out things that help me get through it. I have certain challenges definitely but I can usually manage fine, albeit maybe with more stress than the average person (but who knows, really). So...I relate to some experiences and mindsets here and not at all to others. I very much appreciate hearing all of them.
posted by randomnity at 7:56 PM on August 2 [11 favorites]


I think it's worth noting that the ABA thread currently on the front page has been informing a lot of the discussion the latter half of this thread, both directly and indirectly, and that the assumptions about what parental intervention means in the context of that thread is perhaps a little more specific, and that a lot of the discussion here has been about comments and attitudes in that thread.

So yeah, can totally understand that people have a more positive view of what parents wanting to help their kids means, but that expecting much of that kind of magnanimity or not assuming the worst in the context of a thread about an intervention largely held to be at least potentially abusive and with a very NT-normative motivation is perhaps unrealistic.

I think a discussion of loved ones' perspectives on autism, especially with respect to autism, could have much more nuance than it does here, kind of adjacent to ABA as a topic.
posted by Dysk at 8:09 PM on August 2 [5 favorites]


I think a discussion of loved ones' perspectives on autism neurodivergence, especially with respect to autism...

Missed the edit window...
posted by Dysk at 8:19 PM on August 2 [1 favorite]


Lexica, on the topic of anger in this thread... For me as a person with depression/anxiety/adhd, I get why some people are angry generally, they have communicated that clearly, but I am not sure why they’re mad at people in this thread. Which is what I have gotten from reading. I’m not clear on why this thread has gotten antagonistic for some people.

Anyway, I’m not sure if SRD will end up in the DSM VI, but my eating disorder finally showed up in 5 (food related, texture based compounded by shaming parents to max anxiety) so maybe it will be. It feels very true and Metafilter just isn’t a good place at all for people who subscribe to those cluster of symptoms. Except I have made some really wonderful contacts here who I have messaged with gratitude and also received similar messages. I’m focusing on the kindness I can give, mostly. These threads never seem to go well.
posted by OnTheLastCastle at 8:28 PM on August 2 [1 favorite]


In my experience people who perform anger have been generally doing so in order to be intimidating, and to make it impossible to discuss things. Anger to me is what people do when they know they are in the wrong but are refusing to stop hurting someone else.

Posted by me

I'm really having a problem with the implication that it's not possible to express anger without it being abusive. Many neurodivergent people are angry due to how we've been treated by a world that's not set up for us and which doesn't seem to care about our wellbeing. Being told that it's inappropriate and harmful to express this at all seems like more silencing.

Posted by Lexica at 7:

Again, I put in a qualifier say I was talking about MY experience. This is not a universal and I am not trying to say it is. In my family when someone yelled it was because they were too upset to be aware that they were hurting someone else or they didn't care that they were hurting someone else. When I have had bosses or teachers who yelled they were trying to hurt and wanted to hurt. This is not how it worked in Sciatrix's family as they explained. Sciatrix's family needed to hear anger before they would listen. We have two mutually conflicting experiences and they are both valid, and neither of them are universal.

I don't want to silence anyone but I did want to point out that yelling and anger does not go with a safe space. It makes me feel unsafe. If you are angry and you need to express it, I want you to be able to express it, and I especially want you to be able to express it effectively. If you express anger and it just makes someone else angry and turns it into a fight it's not effective. If you express anger and it frightens someone that you never meant to frighten it's not effective. If you want me to stop doing something and you yell at me I will either run away from you or double down and do it some more in hopes that you run away and I will believe I am justly defending myself from a bully. The last thing it will do for me is make me try to stop and change what I am doing to help you, or empathize with you. But that doesn't mean your anger isn't valid. It just means that as a tool to communicate with me, it's failing in its intention and my patterns of response don't work with your pattern of communication.

The question is how can someone validly express strong feelings without making this an unsafe space. I can't answer that. I don't feel that it would be a good idea to make suggestions that Sciatrix change the way they express themself. "When you get shouty could you please remember to make a disclaimer that you aren't about to get mad at anyone else..." is not a suggestion that is going to be helpful because Sciatrix needs to express themselves and trying to modify that to reassure people like me is putting a caretaking burden on them that will probably be as bad as saying they are not acceptable. Sometimes when you stub your toe you gotta shout.

That means the onus is on me as an anxious person to feel out the situation to see if in fact, Sciatrix is dangerous to me. That can be equally bad as squelching Sciatrix. Someone who has been yelled at abusively has to take on one hell of a burden trying to overcome their own panic and anger to parse how widespread and how dangerous it is when someone else expresses anger. There's not a good or an obvious way of dealing with this. However, Sciatrix and I have both been warily communicating and I hope we are both getting a feel for how dangerous it is in this thread, and whether anyone is trying to push anyone else out or dominate or silence anyone.

I think we are inching towards a closer understanding. I hope that Sciatrix will see my post and understand that when I say, "It scares me when you get shouty," and "Much of what you say about your experiences as a neurodiverse person does not apply to me." definitely is NOT me saying, "You do not have a right to get angry."or "You do not have a right to express your anger." or "My experiences with neurodiversity are more valid than yours." Nope. Everyone here has the right to get angry. Everyone here has the right to express that anger - or any other on topic emotion. And everyone who is neurodiverse has valid experiences with it and no ones are more valid than another.

Sciatrix belongs here more than I do, and Sciatrix's experiences here are more valid than mine. Honestly, yes. That's because Sciatrix has posted more on threads here about neurodiversity and read more posts here about neurodiversity. I think they understand the overall conversation more than I do. They have more experience here. They own this thread more than I do. That could change if I don't shut up and go to bed, of course... But I think that as someone who is less active here than Sciatrix the decent thing for me to do is to defer to them as much as I can because they clearly are deeply engaged in this group and this conversation. The conversation will be much poorer if I mess up and say something that upsets them so much that they have to get out and don't continue to contribute. So please, even if you don't get that I am trying to figure out how we can communicate better and include everyone who wants to participate, don't let me chase anyone away, or make you anxious about expressing yourself forcefully. The bottom line is that Sciatrix has a lot of valid reasons to be angry and if they don't get to express that there is no communication free and truthful communication going on at all.
posted by Jane the Brown at 8:57 PM on August 2 [9 favorites]


I'm jumping into this thread very late, sorry. I'm somewhere on the spectrum with a big dash of anxiety and depression, and an academic interest in human psychology.

One of my biggest issues has always been with distinguishing my own emotions from emotions that are other people's and I believe that to be fairly common with people on the spectrum. Likewise, if I'm around a person who is angry at someone else, I feel very much like that anger is directed at me. I've trained myself so I can usually tell when I'm getting this wrong, but that doesn't stop me from feeling inexplicably horrible. I think that's one of the reasons why it can be difficult to be around righteous anger for those of us on the spectrum: unless we're participating in the anger, it feels like it's targeted at us.

It seems to me like there's a fair amount of that going on in this thread, but also just on the internet in general. It's actually VERY HARD to tell when people are talking about us in a negative way, vs just expressing their own personal opinions. They feel the same to me! People abuse the "I'm just saying" rhetorical device to actually talk shit about people all the time, so it's hard to believe people when they say they're just expressing their own views and aren't trying to imply anything personal. So I have to go back and parse the language really carefully to see what they're saying and build a complex mental model of how likely they are to be lying, which honestly makes me more anxious because it's HARD to do that.

Reading over the last few pages, I'm 99.9% convinced that everyone here is actually being genuine, and are generally showing a fair amount of restraint and vulnerability. I appreciate reading everyone's thoughts on these issues because I've entirely stayed away from any discussion of "neurotypicals" so I it's been great to get up to speed on a lot of different perspectives.

Anyway, just wanted to say thanks to the posters, and also to mention that Metafilter has actually been one of the most open and accepting internet spaces for neurodivergence that I've been a part of. Sure it's not perfect but I've found that people here will give you the benefit of the doubt 50% of the time, which is better than the 1% you get almost everywhere else.
posted by JZig at 10:43 PM on August 2 [9 favorites]


"I'm really having a problem with the implication that it's not possible to express anger without it being abusive. Many neurodivergent people are angry due to how we've been treated by a world that's not set up for us and which doesn't seem to care about our wellbeing. Being told that it's inappropriate and harmful to express this at all seems like more silencing."

It definitely is silencing, although I don't think that's what she said or meant. It seems like it would be difficult to hear anything in this general direction without feeling triggered -- as if someone had said "expressing anger is always wrong" -- if one has had a history of people invalidating their anger in one way or another. My intuition is that it's fundamentally important that it be acceptable to express anger. However, I do think that one has a responsibility in how one expresses it, simply because it is (like a few other emotions) very socially fraught.

I write this as a person with huge issues and sensitivities about anger.

This is my first comment, so, some disclosure: I don't think I'm on the spectrum, though some people close to me think I am. It is the case that there are a cluster of things that people on the spectrum describe that very strongly resonate with my experience. Otherwise, I'm disabled in both body and mind and that's actually why up to now I've stayed out of this thread -- when the post went up, it made me very anxious. I have a lifelong serious mood disorder: chronic major depression, or atypical depression, or type II bipolar, whichever. Despite my very visible and also lifelong disability of a skeletal dysplasia, the truth is that the mood disorder has been profoundly more disabling. With considerable privilege and a few talents partly compensating, I've kinda sorta sometimes functioned and have accomplished some things and often I've managed to pass. But to be very frank, I'm extremely fortunate not to have an addiction and to not have ended up homeless.

My father was narcissistic and abusive. I am exquisitely sensitive to anger -- I am constantly hypervigilant for it in other people. More generally, I have intense anxiety in direct proportion to how much I feel that I don't know what to expect from people. Whether or not I was born with a lot of empathy, it is a highly developed survival skill for me. And, ironically, because of childhood stuff and a very unhealthy experience of anger, I am also myself, at my core, very angry.

Anger is a completely normal emotion; it's a healthy emotion. (I know this intellectually, but I've not managed to internalize it.) It must be okay for people to be able to express their anger, but even for people much less sensitive than I am, anger can easily hurt regardless of intent. So I do think we have a responsibility to be careful with how we express it, but nevertheless it should be acceptable (in general) to express it.

This goes to the heart of my long relationship with MetaFilter. In the old days, when people would say "it's just words on a screen" and a lot of very provocative and aggressive stuff was allowed -- and there was a clique here who were all about that -- this place just badly fucked me up. Not that I'm blameless: the social pathology here fed into all my own issues and I slowly became a worse version of myself. Surely it's the case that I'd changed and grown while away, but it really has felt like it is MetaFilter which has changed and now for me things here are exactly the opposite: MetaFilter has helped me be my better self. And this has a great deal to do with issues here involving aggression and anger and how things have improved.

Personally, perhaps my biggest problem is bullying. I'm not particularly sensitive to being bullied (I mean, I had to learn to deal with it to survive at home, so being targeted by a bully is not by itself that big of a deal for me), and all else equal I'm not myself a bully -- but I just freak out when I feel like other people are being bullied, especially by a repeat offender. That triggers all sorts of volatile things in me. The times I've been closest to buttoning, the times I feel a combination of rage and intense sorrow, are when I see other mefites being hurt. This is the single biggest issue for me in all my years of being a mefite. I think I navigate this stuff much better than I used to, but I'm mostly deeply grateful that it's no longer okay to rhetoricallly beat people up. I feel like there are people who just sort of enjoy being hurtful, especially if they have plausible deniability, and wow am I triggered by that kind of behavior.

I realize I'm being pretty incoherent. What's my point? I don't quite know. But if we're talking about accommodation and mood disorders and people misunderstanding each other -- then "meanness" and people being hurt is the thing that very, very strongly intersects with the things here that are most difficult for me.

And to expand the scope, I think ableism is a problem here, it's a problem everywhere, and it strikes so much to the core of my daily experience that I'm terribly anxious about engaging here in MetaTalk about it. I'm very anxious that this post is primarily about accommodating neurodivergence, with ableism in general sort of an afterthought; I'm extremely anxious that we're having this discussion at the same time as we're having the racism discussion; I'm anxious because there are a number of mefites involved in this thread who I've come to care about and don't want to see them hurt. There's so much involved in this topic and it's all so very sensitive to so many people.

I guess what I'm trying to say, which I've never said before despite all these years and my prolixity, is that I deeply care about this community and particularly no small number of individuals within it, and it just destroys me when we tear each other apart. Like, it profoundly affects my mental health. And yet it's been worth it: I've learned so much from all of you. You've made me a better person. I can't leave; or, at least, I won't. We've become more inclusive, we've learned to listen to each other more, we've become a better community and, I think, better people. But that just proves that we can do these things; it's all the more reason to work harder at it. All I ask -- I beg -- is that we learn to hurt each other less. These days it's mostly from ignorance or negligence than from malice, but even so. I'm not asking everyone to accommodate me, specifically -- but I'm sure I must be representative to some extent. Stuff that happens here genuinely can hurt me -- stuff that happens to other people, not just me -- and I think this is clearly the case for many people. I do think it very much involves neurodiversity, disability and ableism, and accommodation.
posted by Ivan Fyodorovich at 1:06 AM on August 3 [19 favorites]


Many neurodivergent people are angry due to how we've been treated by a world that's not set up for us and which doesn't seem to care about our wellbeing. Being told that it's inappropriate and harmful to express this at all seems like more silencing.

I'm picking this up because anger management has been a major issue for me.

Controlling emotions was a huge thing for me growing up, because I learned early on that anger and rage were destructive, and I had to manage them if I wanted to get along. I think if I'd had more awareness that this was beyond me then my life might have been very different. Instead, it was drummed into me that I was supposed to be in control, which I wasn't. I wish I'd been able to work these things out in private, but you don't always get to do that, and I learned to use emotions manipulatively. I weaponised them, and as often as not turned them on myself.

This is what I mean when I talk about a normalising world that encourages toxic behaviour. And I can absolutely understand why other Mefites find expressions of rage unsettling, because it unsettles me too. I've been down that path before, and I do not want to be that person. It was bad for me, and bad for the people around me. Guess what? Rage is harmful. Recognising that fact and learning from it is not the same as being silenced.

There is nothing whatsoever wrong with directing a laser beam of righteous anger at the right target. By all means, be angry. I'm angry about ABA too. But reading this thread, I can see a great deal of rage and pain being worked out to very little tactical advantage. This is not a good use of our autistic superpowers.
posted by Elizabeth the Thirteenth at 3:53 AM on August 3 [4 favorites]


Things that would help:

Deleting off topic comments that are flagged, especially if they were flagged by the person writing the ask. I am one of the people who would agonise over writing my question just so, and it seems almost no matter what I do, someone will go off in an unhelpful way (they are NOT answering the question) or fixate on something mentioned that I guess I should have left out. If said comments were actually dealt with by mods the thread could move on, continue to be useful, and be re read as needed without being upsetting all over again. As it is, I will likely never ask anything ever again - largely because when I asked mods for help it was ignored.

I would like to be able to flag and have removed comments that do nothing except deny your lived expedience. This is annoying af. If you had a different experience or perspective write about that, fine... But don't just pop in to say that my experience couldn't have happened. It's also an annoying and pointless comment to be reading.

I'd love the ability to have the opposite of mymefi: tags and keywords I can nominate to make those things not appear. There are certain topics that hit too close to home and I will spend inordinate amounts of time reading every comment and crafting responses. It is very hard not to. It is...a process. Especially once my Ritalin has worn off for the night.

It world be great if I could get an email notification when something new is posted to Mymefi. Quite frankly, so I spend less time here. If I pop in to see if there's anything new on mymefi, I will end up reading the whole internet.

I just saw the post on the blue about the game KindWords... I wish this could be integrated into MF somehow. Either a KindMe space (separate to ask, but similar), or something. Sometimes I don't have a specific question, or haven't figured out how to phrase it, but I need to put something - a thought, feeling, experience out to the hive mind. Just to touch base, and get some...kindness, in a thoughtful moderated space. One of my very first asks was about finding some sort of pen pal / written supportive club (if you will) and I *literally* had over 100 mefites PM me asking me to start one. Maybe this is a way to do it.
I process things by writing, so this sort of space would mean a lot.

I have ADHD.
posted by jrobin276 at 5:24 AM on August 3 [8 favorites]


I'm not trying to say anyone shouldn't communicate or be here. I'm saying that I feel unheard. That's the root of my frustration. There is room for all of us but we have to listen to each other, and I am paralyzed with the fear that I am not listening enough, or that I cannot speak the right language in the right space. And I am acutely aware that I am being observed by all manner of people, some of who are allistic and neurotypical and some of whom are allistic and have their own differences from neurotypicality. This isn't WrongPlanet.

I am repeating myself over and over because I feel unheard. To be clear, I feel most unheard by moderation here on this subject, but I also feel unheard when I am saying "I see a problem and it causes me pain" and hearing back "your expression of that pain is hurting other users in this thread." I feel like I am being unreasonable. I feel like I am shoving people out of the conversation, and that I cannot both be emphatic enough to be heard and soft enough to coexist with other people in my community, because everything is about my level of emotional loudness and not about the things I am trying to say about why I am being loud. When I say I am frustrated, I mean that I am frustrated which is not the same thing as being angry at a person. It means I am angry at the situation I find myself in, and maybe myself.

This is uncomfortably like being in an argument with my partner, who is also autistic. Both of us have problems with volume control, and both of us have trauma which makes us upset and terrified and overwhelmed when someone is too loud. (There are bonus auditory processing issues sometimes, too.) It is sometimes hard to meet in the middle, and it works because we both make a lot of effort to explicitly acknowledge and affirm that each other is trying, but also because there is a lot of positive interactions with each other out of conflict that lets us build up trust that yes, each of us does care about the other. I don't feel that here, and I am at a loss for how to cultivate it. The people mentioned here who have walked, whose presence I miss, are people I have noted making a deliberate effort to build up that kind of positive signaling to other people, so that conflict isn't as painful as it might otherwise be.

That kind of work takes energy and thought and care, and it is harder when it does not feel noticed or acknowledged. And of course it is easy to miss if you don't know to look for it, but I'm particularly grieving because the people whose presence I see gone and miss are people I have observed being deliberate, intentional, and explicit about that kind of building up of small positive interactions. If people are explicit about that I feel like they are more likely to notice when I do it, too.

If no one notices, all that work of trying to set positive interactions and signal "yes I am listening, yes I like you, even when we are in conflict I like you, please trust me to not hurt you if you explain yourself" is lost. So I am doubly tired because now I have put all the energy into first looking for and consciously processing someone else's vulnerabilities and more work into trying to make the conversation safer for other people and monitoring what has landed and what has not, and all that work has missed the mark and flown off into the ether. And it is all conscious, explicit work, work I do that allistic people seem not to notice unless I stop, and work that I am not allowed to shirk because its absence is notable.

I do not feel safe sharing the ways in which I like being autistic here. I barely feel safe talking about autism at all on this site, are you kidding me? I appreciate the offering to do so and I think it comes out of a place of trying to make connection, but it also makes me feel unheard again. I am saying "I am hurting, listen!" and hearing back "but why can't you find joy in being like this?" Of course I can find joy! But when I cannot be open and forthright about when I am in pain without being heard, why should I feel safe about expressing joy? Why should I perform joy when I cannot be heard? I have been told directly that my autistic expressions of joy in, in flapping or touching soft fabrics or curling under weight and pressure are shameful! Explicitly and implicitly! My joy is vulnerable and soft and if it isn't safe for me to say I'm in pain, it is not safe for my joy either.
posted by sciatrix at 6:09 AM on August 3 [15 favorites]


As you probably gathered from both the content and the autistic info-dump format of my 'Autistics Speak' post, I am Autistic :). There are lots of autists writing on the internet, and they're saying things I don't think most people know. The societal discussion of autism most often focuses on the parents, both what they are experiencing and how they should parent their children. My hope was to share information allistic people may not be likely to come across, to amplify the Autistic voices I linked, and to hear from some other autists and learn from them. I also posted because I find autism so interesting myself, and when I find something interesting my (autistic) response is to gather information in an organized way and share it.

I'm not angry at (most) parents of Autistic children. I am frustrated, though, and I guess that lives on the edge of anger.
Allistic parents find themselves suddenly in an experience they have no understanding of, and I sympathize with them. They start looking for information, and if they google 'autism' the first three results with be Autism Speaks. The group has big money and they use a good deal of it for advertising, so it's familiar to parents. If they go to an 'expert' they will be directed to ABA, and they'll do it, because they want the best for their children and they're told ABA is it. They only know autism through the lens of allistic people.

What frustrates me is that not only do a lot (most?) parents not go looking for Autistic perspectives, they seem to think they know better than the Autistics they come across on the internet. They have an opportunity to learn, and they won't take it because it challenges their hope that they've found the best way to raise an Autistic child. It would be great if parents came in and said, 'My kid seems happy with ABA but I'd like to be more sure of that. Can you tell me more about how it feels to be Autistic?' But that happens very rarely, if ever. Instead we're told their kid is happy and we are wrong and we're not autistic enough to understand their kid anyway.

To tie back in to the point of this thread, I love metafilter. I read every day. I learn a lot both through the links and the comments, and it makes my brain happy. But I've never been 100% sure my voice is going to be received well. I've only ever commented a few times. The post I made was the first one I've ever done. Someone above commented that the format of it isn't good for metafilter, and they may be right. The format of the post is directly related to my being Autistic, though, and I'm not sure I could make any other kind of post. So I'm even more anxious that maybe I'm not good for metafilter. That wouldn't make me leave, because I can enjoy metafilter without creating posts, as I've done for 20ish years. It doesn't feel great, though.
posted by ruetheday at 6:45 AM on August 3 [17 favorites]


Respectfully, I want to talk about the characterization of other MeFite's emotions happening in this thread. I would ask that we be careful about using the word rage. To me, that word means intense, uncontrolled, violent anger. I have seen absolutely none of that in this thread. This doesn't mean it's not there--I am not saying my interpretation is correct, but I see no rage here. I see anger, I see hurt, but I see no violent uncontrolled outbursts. Perhaps consider when and how that term is used.

I also want to talk about the usefulness of anger. Elizabeth the Thirteenth touched on this a little, but I really want to expand past that: anger is useful even when not being used to tactical advantage. I'm speaking from a background in emotion-focused therapy (EFT), which I have found very valuable in exploring and explaining my experiences with the world. The core of this model is that emotion serves a purpose. Emotions signal to yourself about your needs and what's going on in your environment, they signal to others your needs and where you're at, and they motivate behavior. In this model, anger's purpose is to signal to yourself that your boundaries have been violated or your goals have been blocked. It signals to others that they need to back off, stop violating your boundaries. And it motivates you to assert your boundaries or remove the obstacle.

Now, you can be experiencing healthy anger but express it in unhealthy ways. Anger and anger expression are two different things. There's also this whole thing with primary vs secondary emotions (your "true" emotion versus your reaction to having that emotion). Secondary anger (e.g. becoming angry because you're sad) can be harmful and destructive. But what I'm seeing in this thread and the ABA thread reads very much like primary anger to me: autistic people's boundaries have been violated, and they are trying to shore up those boundaries and assert themselves. This is not about tactics, to me, but what it means to be human and interact in a society. It is important to express that anger, not just for ourselves, but because we need to signal to others what behavior is boundary-violating. It is good for the other people involved to know what they are doing is harmful. This is how people learn to live with others in a community.

We can have a discussion about what is and isn't an appropriate or effective expression of anger. But it is important both for the person who's boundaries are being violated, and the person violating the boundaries, that that anger is expressed. Anger is useful. Anger is important. Overcontrol of anger leads to an inability to assert oneself or shore up boundaries. And I think that's part of why sciatrix and others are feeling silenced: it sounds like they are being told not to assert their boundaries. I don't think that's what anyone means, but when we make this a conversation about anger, rather than communication, that's what happens. Because from what I've read, I don't think anyone is upset at sciatrix and others just being angry. I think they're concerned about how that anger is communicated to others, because certain kinds of anger expression are triggering to them.

It might be helpful if we moved towards what, specifically, is a triggering expression of anger, and what would be a non-triggering expression of anger. And, as someone with a long history of hypersensitivity to anger, I would gently suggest that during such discussion we consider whether asking for anger to be expressed in that way is reasonable, and if there are other compromises we can come to. If the answer is "any expression of anger whatsoever is triggering," that is understandable and valid, but not conducive to interacting in a community. In that case, we need to find other ways to protect community members who are hurt by expressions of anger, because we need at least some expressions of anger to be able to function as a community.
posted by brook horse at 7:26 AM on August 3 [20 favorites]


What frustrates me is that not only do a lot (most?) parents not go looking for Autistic perspectives, they seem to think they know better than the Autistics they come across on the internet. They have an opportunity to learn, and they won't take it because it challenges their hope that they've found the best way to raise an Autistic child.

I am a non-autistic parent of an autistic son, and so have been reading but not posting in this thread. I wanted to add a suggestion in case there are others like me reading here (and I hope there are!):

When I talk with other parents of autistic kids who are in information-seeking mode, I always suggest that they look for the perspective of autistic adults and point strongly toward autism-acceptance websites such as Autistic Self Advocacy Network and The Thinking Person's Guide to Autism. I think amplifying those voices is the only responsible thing I can do, because they are constantly being drowned out by the more powerful "awareness/cure" parent voices. And other parents are more likely to find value in the diversity of those autistic voices, than in listening to me talk about my personal experiences which are after all an outside perspective on relating to just one other person.

Back to lurking...
posted by Daily Alice at 7:30 AM on August 3 [12 favorites]


Regarding anger, I would like to note that people, especially allistic people which to my knowledge includes all mods, often do not realize that someone feels strongly about something if that person does not overtly perform emotion.

So, in real life, some people won't believe you're angry if you just say so. They don't take you seriously if you don't do the "appropriate" tone/body language/non-verbal signs. This is because of the strong reliance allistics (and some masking autists) place on non-verbal communication.

On the internet, though, you can usually just say you're angry without adding much more in terms of tone. People tend to read things as more hostile than they actually are because of the loss of non-verbal positive signals, so they will typically believe a plain statement of anger or unhappiness. That means that generally, you don't have to replace the non-verbal communication with, for example, cursing, in order to get your point across. Most people tend to read those kinds of tone signals (e.g. cursing) as being very hostile, and they produce a lot of anxiety.

Or, tl;dr, I think you might be overcorrecting a bit, which is nothing to feel bad about, but something I wanted to point out in case it might help you calibrate in the future. You are a very clear communicator in general, so this is a minor tweak, but one which you might find helpful.

On another point, though, people having reactions to what you're saying aren't necessarily not understanding you (even if that's the dominant failure mode you experience). Sometimes they are just doing the "you say a fact, now I say another fact that doesn't really respond to your fact but does mention it" thing, which can be frustrating because it changes the subject a bit and is not really an expression of listening. But at the same time, sometimes people are not wanting to diverge from saying what they want to say in order to invest a lot of time or effort into making all of the right active listening noises, especially in a thread with a lot of autists. (No offense to us, but things tend to lean a bit towards the info-sharing side of things than to the social-expression-of-listening side of things.) In that vein, remember that your audience might be listening but simply not prioritizing making you feel heard, and that their priorities may have nothing to do with you personally.
posted by internet fraud detective squad, station number 9 at 9:55 AM on August 3 [8 favorites]


Maybe the clearer way to say that last paragraph is...I think if you're not feeling listened to in a thread that has a lot of autists in it, it's worth considering whether they are listening, but not communicating that for whatever reason. Not feeling listened to doesn't have to be okay with you, of course, but there is a sort of spitting-into-the-wind quality to trying to hold us to a high standard on this particular point when we are all here trying express our own stuff, too.
posted by internet fraud detective squad, station number 9 at 10:07 AM on August 3 [6 favorites]


sciatrix, sincere apologies if I came across as blunt back there. Sometimes, all I can manage is plain speaking. To be clear, I am not worried that you may be hurting other people - I am worried that you are hurting, period. You are not responsible for other people's pain, particularly not that of random strangers on the Internet. And you are being heard.

brook horse, I can't thank you enough for articulating what I was trying to get at there. That is so much the answer I was hoping for, and more besides. I could talk at length about the problems I've had with processing emotions, and when I use the word "rage", in all likelihood I am projecting my own experience onto others' motivations. In my book, healthy anger is tactical anger, and I am all for a discussion about how it can be articulated in more constructive ways.

A quick note to any parents reading this. I was raised by a slightly neurotic NT mother and an amazingly sane borderline ND dad, so my experiences are rather mixed. For the circumstances this is about as good as I could have hoped for, but the pressures of being trained not just to "act normal" but for high achievement at a young age definitely caused me problems, at the time and in later life. This has nothing to do with my folks, who were (and still are) great, and everything to do with the fact that autism as a way of being is not well understood, particularly as it affects women. Knowing what little I know from the subjective experience of a perfectly adequate upbringing, and from flying under the radar for most of my life, I am frankly terrified of the harm ABA could be doing to kids. Hence, I feel very strongly that we communicate what is going on here as clearly and as soberly as we can, to each other and to the world at large. All the righteous anger you see here is an entirely appropriate response.
posted by Elizabeth the Thirteenth at 11:24 AM on August 3 [4 favorites]


I have ADHD. Pagination of comments would be immensely helpful to me. In longer threads (like this one) most of the time I read maybe the first twenty comments, skim another ten, and then either skip all the way to the end to read the most recent comments or I tab to something else entirely because by then I've lost track of where I was and it's more effort than it's worth to figure it out.
posted by Xany at 4:59 PM on August 3 [3 favorites]


Pagination of comments would be immensely helpful to me.

I'm tempted to try and make a browser extension to do this. Mostly because I'm apparently bored and foolish.
posted by hoyland at 5:12 PM on August 3 [4 favorites]


I would ask that we be careful about using the word rage.

Sorry, that was a literary reference. I didn't mean it to come off that I am raging against things here on Metafilter.

I thought people would get that reference, and I apologize for using the word "rage."

Just frustrated about the mental health care institutions in the USA that I have personally experienced, and wanting to put my two cents in for the "therapy is the answer for everything, oh have you tried yoga and essential oils," answers, of which I have no examples at present, sorry.

My AA therapist was herself belonging to AA, not me. When I first went to her, she said she was 8 months into AA, and did I have a problem with that? I said no, not really, but every session was colored by it. I wasn't a heavy drinker, I was stressed out at work, and she was a very strange person, let alone a therapist. The day she screamed at me, I'd just come off a huge work project, where I'd been complimented and taken out to lunch by my co-workers. I walked in and she just started screaming at me for 20 minutes. I walked out and never went back.

I've had some good therapists, and some bad, but I don't think therapy is the be-all-and-end-all for the solution to life's problems. AskMe answers that just default to "get a therapist" are often unhelpful, and may be harmful if a person has been to therapy and might just need some validation and/or some support and guidance from personal experience. That's just my opinion, from being 55 years old, and going through some major stuff in my life, and again, sorry if the word "rage" was inappropriate in this thread. But that's how I feel sometimes, having dealt with horrible people who claim to be mental health care workers in the American system. Rageful.
posted by Marie Mon Dieu at 5:26 PM on August 3 [6 favorites]


People are so quick to condemn, so quick to make it clear that sympathy is conditional. It's treated as if it's just a political question (like, the abstract question of victimhood), rather than as something that might affect other users personally. Call it ableism, call it stigma, it just sucks.

We have the (nominal) rule of not blaming the victim. What often gets lost is that the very first victim of mental illness is the person themselves, yet they are the first to get blamed. I only just now saw the Susan Hawk thread, and yeah, she was definitely the Victim Number One of her troubles, and instead of supporting her much of that thread was vilifying her with no compassion or thought.
posted by Evilspork at 6:17 PM on August 3 [5 favorites]


Some disconnected thoughts:

I'm diagnosed with anxiety but it's probably C-PTSD. Labels are just a tool. I'm convinced that our current understanding of mental health is based on some incorrect assumptions, and someday in the future we'll have to completely change the tool. A bit like the Ptolemy version of the solar system making way for a Copernican one. Ptolemy's observations were pretty good, but he lacked a key piece of information. I think the social model might help us find a way past old types of understanding to a more accurate knowledge.

CBT is very good at solving one type of problem. It would probably have a higher success rate if people only used it for cognitive distortions, and stopped trying to make it fix every other brain problem. Its like trying to use a hammer to cut wood.

I don't see myself as part of the neurodiverse community. But I'm open about my mental illness and that encourages people to tell me about theirs. My work brings me into regular contact with autistic people and people with disabilities. In my limited experience: few people with mental illness are ND; but a significantly large proportion of autistic people and people with disabilities have mood disorders. I suspect a lot of this difference is due to the trauma of living with families and/or a world which will use physical and emotional violence to force conformity.

Things I'm going to try, to make MeFi better for all of us in this zone of mental and physical issues:
- pushing back on ableism in the threads I'm in, so it's not always left to the victims to either endure or educate
- learn more about DID (I have links open already)
- remember to use the 3 comments guideline mentioned earlier by Karmakaze
- link to previous comments I'm referring to, to make it easier for folks to find context if they're not reading in detail or in sequence
- stop making so many RTFA comments. They annoy me, but I hadn't considered why it might happen so often. I'll be kinder in future.

Thankyou to everyone who has posted here, even when it was difficult for you. I appreciate and enjoy what you bring to MeFi, and to the world.
posted by harriet vane at 9:27 PM on August 3 [12 favorites]


I have a MeFi IRL meetup tomorrow in Berkeley that I created, so it would be bad to miss it. It's a board game meetup, and board game meetups are great for me, because of a structure, a system that I can focus on.

If try to post too much I'll start editing, and then I'll be up until 5am, so sorry, there will be multiple comments. Okay a half hour (now 45 minutes hard to stop but hitting post now) went by of me editing this, adding, deleting, revision, so I'm calling it as good enough.

I'm not going to describe why, but this thread is right for me. I am here for this. Thank you.

I was just reading a wiki post about adding Epicycles as a metaphor about Copernicus and solar models. Apparently even Copernicus didn't get it right because he was also using circles, it needed Kepler.

People seem to me to talk too much here as if other people are consistent beings that they know. They use identity language, say someone is, instead of something is being or doing, which messes with me, because to me identity implies a fixed quality and and knowledge of internal state, and I am very good and revising, adding epicycles. But even so, I don't even know my internal state fully, and while others may have insights into me that I lack, even the combination of their insights and mine does not contain me, or anyone. A function creates a line, but the line is not the fixed points on it. I evolve, I grow, as do we all.

The people who have posted in this thread have my genuine regard and consideration, my empathy or my sympathy for their struggles, my happiness for their successes, my sorrow for their losses.

Metafilter has helped me improve myself, a work in progress. Thank you. I'm not going anywhere.
posted by gryftir at 1:45 AM on August 4 [8 favorites]


Jumping back to a positive here.

I can find some topic, get fascinated, spend hours reading on it, write six hundred pages on it just because I think it's cool and be blissed out while doing it.

Oh, I hear this so much! My therapist, of all people, is surprised by my brain full of random stuff I found out about. Do other people just not get curious about stuff? Knowing stuff is amazing!
posted by Karmakaze at 8:53 AM on August 5 [17 favorites]


I don't "hang out" on mefi as much as lots of folks in this thread, but I'm autistic, and I've been a site member since 2011. I spend more time on AskMetafilter than any other part of the site, FWIW.

On balance, I would say mefi is better than the Internet At Large when it comes to neurodiversity-relevant discussion. Still, every so often, I encounter one of those cringey threads where someone is describing a person being incredibly rude and/or flat-out abusive, only to have commenters pipe up with "maybe they're on the spectrum!", but that seems to be happening less frequently than it used to, which is encouraging. One thing that would be awesome would be for nonautistic folks to please pause before jumping to the conclusion that "social awkwardness" is a viable explanation for someone being a jerk or trampling others' boundaries, etc. Same for attributing behaviors that are more likely sourced in toxic masculinity to autism.
posted by aecorwin at 1:36 PM on August 5 [10 favorites]


What needs to be known is that accessibility is in the fucking dark ages for neurodivergence. Accessibility is in the dark ages for any divergence or disability but particularly autism. You can avoid flashing lights and build wheelchair ramps in a building. What is very rare is, say, unconscious bias training around neurodivergence. The social rules are both rigid and ever shifting and are unspoken. It's hell. It's a goddamn nightmare. So mods, if someone makes you feel uncomfortable, check your bias. Check it again. The rules apply to every one, and neurodivergent people can be good people or dicks, but what I see far too often, on this site where I've been since 2004, and elsewhere, is the situation where socially fluent people get second chances, and neurodivergent people don't. Also, neurodivergent people are just as likely to be applying these discriminations - we get told weird is bad and we enforce it against others.

Years ago, a mod here told me not to talk to them casually anymore because they read a post I made on another site and they thought it was about them. I developed a trauma response around mefi it took me years to get over. I still get nervous if I need to ask the mods for anything. I would like to think that that wouldn't happen here anymore, but I am ready to be pushed out of here just because I've mentioned this. Trauma again. Good practice would look like mods getting some professional training on supporting neurodivergent users from someone recommended by the autistic self advocacy network or similar. I would be willing to chip in a few quid to support this.
posted by Mistress at 8:56 AM on August 6 [4 favorites]


I haven’t read any of this thread. It’s super important for navigating my life as a person with complex PTSD to be able to titrate my exposure to news about US politics aka the most triggering abusive family dynamics ever. So please please actually tag US political news posts. There are like three posts on the front page of the blue right now that need to be tagged that and haven’t and honestly I’m wondering if I can keep participating in Metafilter if this keeps happening.
posted by overglow at 9:08 AM on August 6 [5 favorites]


One of the things that I struggle with, here and everywhere else, is the question of when my irritating behavior is caused by my ADHD and related issues and I need to cut myself some slack, when it's caused by my issues and I still need to figure out how to stop doing it, and when it's not caused by those issues at all and I need to stop making excuses. And honestly, I don't have any answers about that. It's something that I struggle with as the person experiencing my life, and it has to be even harder for people who don't have the benefit of being me. So I honestly have no idea how the mods are supposed to walk the line between accessibility and enforcing site norms.
posted by ArbitraryAndCapricious at 9:12 AM on August 6 [8 favorites]


Hey overglow, do you mind pointing out which threads aren't tagged? I'm not seeing them offhand, and we had a complaint overnight that the filter wasn't working and I want to triple-check, because yeah, that's an important filter.
posted by restless_nomad (staff) at 9:57 AM on August 6


(Feel free to just use the contact form, it is a bit of a derail here.)
posted by restless_nomad (staff) at 9:59 AM on August 6


So I'm coming to this late, but I deal with ADHD/ADD on top of depression and some other potential things that we are trying to get a handle on that mostly come from a very abusive childhood and a history of being gaslit.

As many others who have said, this site can be a major timesuck for me. That is both good and bad. The amount of random things I have learned from this very site is staggering, and it has been a large influence upon me. I have also found that this is one of the better places to discuss mental health on the internet - Certainly not perfect, but better than most.

That being said, there's something I haven't seen come up here yet that relates to my experience with the site... I may have missed it looking over, not sure. But over my many years on this site, I've learned that when there are comments or even posts dealing with ADHD, I often have to flag and move on, because there are a still sizable amount of people who don't think it is a real thing, or who just see the stimulants prescribed for it as some sort of luxury drug or a way of zombifying children or whatever. These stereotypes still persist, even here, and it's very frustrating.

There are real problems with ADD/ADHD diagnosis and treatment, and they aren't exactly unique problems in the role of mental health. Many people cannot afford testing (I was one of them!) or talk therapy (I lucked out!), but can afford treatment. Doing the latter without any sort of talk therapy or testing is incredibly tricky, and I'm fairly confident that a surprising amount of people who are getting treatment have been doing so without the support needed to really understand the condition, or if it is indeed the actual condition they have. There's a whole rant about the state of mental healthcare and the insurance industry here that you all are likely well familiar with - but I am sure that a majority people who have had bad experiences with treatment fall into this category.

Stimulants are blunt instruments, and different types and amounts can have drastically different therapeutic affect. The difference between 20mg and 30mg of vyvanse for me is that on 20mg, I am not quite as focused as perhaps I would be on a larger dose but still much better off than I'd be without any, and on 30mg, I have palpitations, get angry a lot, and encounter a lot more creative blocks. I came to this amount over 12 years of therapy as an adult, and lots of adjustment. It still needs adjustment from time to time, and it takes a lot of vigilance and self-awareness.

I am also taking medication for depression. For me personally, treating ADHD/ADD alongside depression is a life or death matter. If things are way off in the treatment or I'm having a particularly manic or down phase, subtle adjustments in how I treat the two keep me from either falling so far down my own pit that I lash out and destroy all of my world out of a self-destructive desire, or I am so amped up that I do incredibly stupid and equally destructive things, just with different motivation... or on the ADD/ADHD side, if I can actually do things like drive safely (which I try to avoid doing these days because while I am capable when being treated appropriately, I just think it's risky for me personally)

Anyways, I say all of this to say that ADD/ADHD can be very serious. Just like any other mental illness, there are degrees of severity. ADD/ADHD in particular seems to be trivialized all over the place as just being "scatterbrained" or forgetful, often dismissed outright, certainly joked about, and man is all of this frustrating. I'd like to hope that people on this site can understand that it can be a very serious condition, and it's better than most, but it seems like at least once a year there's something posted on [students|executives|whoever] abusing [stimulant] to get ahead, and the conversation quickly devolves into one that I feel immediately on the defensive.

The thing is, abuse of medication is a real problem, it truly is.... but that doesn't invalidate the legitimate use of it for effective treatment where nothing else seems to work well, which is often the case with ADD/ADHD... and it would be great if we could discuss that without people telling me (generally indirectly, BUT NOT ALWAYS) that I don't actually have a condition because it isn't real or that I'm taking poison that will zombify me or whatever else matches their notions. Because here's the thing - as blunt as it is, as prone to abuse as it is, this shit works. At least, for me, it does. I'm not exactly someone you'd call an overachiever, or who is trying not to sleep so I can have more working hours in the day, or someone who is seeking a competitive advantage. Because of treatment, I'm able to lead a somewhat more normal life in a way that I wasn't able to before, and it's still a fragile thing. I'd rather not take them, but the times I've discontinued it have not gone well, without going into detail.

I doubt anyone who needs to actually read this will get this far into the thread. I expect that some people will get this far, and are smirking to themselves thinking that I just don't understand, I'm just addicted to the medication, or I'm trying to justify it. And maybe there are experiences that lead to this sort of feeling in your own life. If that is you, I would really appreciate it if you would take the time to consider that maybe your perceptions and experiences of it are not representative of everyones.

Lots of love to all of us posting in this thread. This is always a tricky topic, and mental health is so highly stigmatized almost everywhere.
posted by MysticMCJ at 2:28 PM on August 8 [12 favorites]


anxiety that keeps me from leaving the house some days (hence: reclusive novelist), and distractability that may or may not rise to the level of adhd. currently being treated with meds generally prescribed for bipolar disorder because brains are weird and brain medicine is guesswork and ssri-category drugs have effects on me that are way, way too strong.

... and i have a pony request. or maybe a pony removal request.

please remove the "favorited by others" field from user pages. scoreboards are a dark design pattern, especially for folks with adhd. if the only way i could keep score was by using the infrequently-updated infodumpster, i'd be less likely to spend so much time minmaxing my favorites-per-comment ratio and i'd be less likely to spend more time on the site than is healthy. the little boost of serotonin i get from seeing my score go up is badly addictive, and distracts me from my day job as a reclusive novelist. i've got a limited number of words in me per day. if i'm spending them here, i'm not spending them places that get me money that i can trade for food and shelter.

scoreboards: not even once.
posted by Reclusive Novelist Thomas Pynchon at 4:15 PM on August 8 [5 favorites]


It's also maybe worth noting that the executive function deficits that really define ADHD can be incredibly debilitating, and that in some ways (at least in my experience) whether or not it's a helpful diagnosis versus other potential diagnoses can honestly be a function of whether the stimulant meds work. That's partly because other neurodivergent brain configurations can generate issues with executive function (autism, sensory processing disorder, other things), and so can other things like depression and traumatic responses.

For ADHD, titrated stimulant doses can help the brain cope. For some of those other executive function barriers, they won't. So... at least when I was a kid, it was/is a really common practice to give the stimulant meds a shot, see if they help, and stop if not.

I have diagnoses of both, and a few years back I got completely fucked up on my executive functioning and went "well, maybe the ADHD dx was right, maybe that's something I need to recheck?" And... well, pretty much the only way to investigate that was trying stimulants for a bit. Bad idea in my specific case, as it turns out, but that was honestly the only diagnostic test that was really helpful to determine whether those meds would help. The fact that the answer was no doesn't mean that the meds are evil.

And the stigma surrounding them is so hard, and the tight control on them is viciously funny when your problem is executive function, and it's always seemed like such a unnecessary thing for folks that do need them to deal with.

Diagnosis of these things is its own complex thing, incidentally; I find so few mental health professionals are really prepared to handle a person like me that it feels like something of a crap shoot even trying. The stigma about self diagnosing also gets so built up and then the gatekeepers have a sad questionnaire I could have Googled for myself in about ten minutes... But no one is really equipped to handle questions like "if I ruthlessly control my behaviors in the face of rocketing blood pressure and hyperventilation because I know about the concept of panic attacks, are these episodic things I'm encountering actually panic attacks or no? Do you have to lose control or is the subjective experience of terror and heart racing enough?"

I find that professionals are not really prepared for someone who has long since accepted that no one will be accommodating the experience of being overwhelmed and unable to process everyday situations. They also don't seem prepared for a person who has long since learned that expression of terror and overwhelm are not to be tolerated and has learned to control behavior, if not the underlying consequences. So even when I'm trying to seek medical oversight or therapy to deal with this shit, I find that I can either look for anyone with experience with people like me on this axis and filter out all the reams of therapists whose whole practice is structured around the needs of children and hope to hell they get me okay and mesh with me, or I can look for a person who mostly treats neurodiverse adults and get on a real big waiting list that might or might not be available on a usable time frame, or I can take a chance on a normal therapist or psychiatrist and just kind of hope I can get good out of it ahead.

I spend a lot of money on mental health care, and I'm not convinced that mental health training really exists to prepare very many professionals for the needs and realities in this field. And I am very sure that it's hard to find them because, aha, all the focus is flooded on professionals for children.
posted by sciatrix at 4:16 PM on August 8 [13 favorites]


The aggression expressed by some in the mushroom allergy thread really scared me. It’s like someone expressing a need who can’t meet some standard of proof is trying to cheat others out of something. That’s as close an analogy as I can get for how I feel here sometimes. Was it ever a community with respect for its members or am I misremembering something from a time when I was doing better? I want to join in and be part of the weekly threads on the grey but it’s intimidating. I don’t know if this makes sense, I’ve been editing for about an hour.
posted by mrcrow at 5:10 PM on August 8 [16 favorites]


I think some of it is misdirected fury about, like... this idea that accommodation is only for people with Real Documented Disability Needs and not for anyone else, ever. You see this a lot in disability contexts, like when people get absolutely furious that someone using a wheelchair might be able to stand and walk a short distance, or people get very angry that a young-looking person might use a disabled parking space--people will get an idea in their mind of what a Real Disabled Person looks like, and get very aggressive about protecting accommodation infrastructure so that only the Real Disabled People can use it.

Which.... tends to result in, yes, real disabled people being attacked for actually trying to make use of accommodations that are theoretically there for their use, because observers mistakenly think they can gatekeep and tell "real" problems just by observing. And sometimes when you're getting gatekept like that and your life is harder because people think you're just lying about not being able to eat such-and-such food because you "only" projectile vomit when you eat it, or you "only" have a day of gut pain and cramps waiting for you, or it's not an allergy as much as it's "only" a trigger for a debilitating balance loss episode... well, it's easier to get mad at the people who must be out there lying, because the gatekeeping folks had to learn that somewhere, right?

I think that that rage about cheating comes from an essential suspicion about the claims that people make, truthful or not, that they need accommodations that other people might not need. The rage happens because people don't quite believe that the accommodation is necessary and are looking for things to prove themselves "right" about this belief. And when people find something that passes their own threshold for being "proved right" about that idea, they get really mad really, really fast. I think some of this is fear people have about not having their own needs respected and anger that someone else might have their needs met while the focal person feels missing something.

Which is all very silly. Accommodations should be case by base determined by conflicting needs, according to the specific situations that people find themselves in and the needs of the people involved. But this idea that decisions are a zero-sum game and anyone whose needs are met is "winning"--that's something we're all collectively marinating in, and it's not okay.
posted by sciatrix at 6:09 PM on August 8 [21 favorites]


sciatrix said: And the stigma surrounding them is so hard, and the tight control on them is viciously funny when your problem is executive function, and it's always seemed like such a unnecessary thing for folks that do need them to deal with.

It's like those movies where at the beginning we see that the character has some big flaw or weakness, and then in the big finale that flaw comes up again so the audience will say, "Oh yeah, I remember that from the beginning of the movie," and the hero overcomes the weakness and everyone murmurs their appreciation. Except we are not characters in a movie.

A few months ago--no wait, this is now over a year--I finally got up the nerve to talk to my new doctor about the executive functioning stuff, with an eye towards getting a new diagnosis and possibly trying stimulants. I asked a question about it here in 2015, so we're basically talking three years of mulling it over before bringing it up. And she tells me, well, we don't really do that here, but let me give you the phone number of absolute strangers you've never met, who work at a place you haven't been before, where you will need to call them on the phone to set up an appointment for some date in the future so they can talk to your actual self in person and judge whether you are worthy of this medication.

I mean...if I could do all that with the ease with which she described it, I wouldn't need to think about taking the medication. That would be a very triumphant victory over my inability to think, to plan, to talk, to interact, if at the end of the movie I were able to march into someone's office and demand what I need.

Instead I lost the number and couldn't remember which clinic she was talking about because it had the name of my town in it, and every clinic here has the name of the town in it, and then she left and was replaced by another doc who I haven't really been able to talk to.

I feel like the mental health system is set up for people without any deep, chronic problems. Temporary sadnesses, transient anxieties. Normal people with normal minds who just need a little chemical cheerleading.

It was hard enough to earn my Ativan. So many conversations, and of course the humiliating drug tests where literally everyone in the office could hear them asking me why I couldn't just pee in a cup like a normal person. It's humiliating even to say that, I'm not sure I can keep this paragraph in, because it was so awful, six months of showing up to the office and being handed the little cup and feeling my anxiety and blood pressure and pulse all spiking, all to prove I wasn't smoking pot I guess? Because doing that would prove I wasn't the sort of person who deserves to be treated for anxiety? And I finally succeeded and got my prescription and then had to go through it again a year later but I guess now they are convinced I am a Good And Deserving Patient because when I said it really wasn't working to quell my anxiety, they doubled the dose?

But ask about the next med I want to try, and we're right back to the beginning. "Ah, drug-seeking behavior. Well, just prove you're perfectly normal and good and capable of navigating complex phone menus and social interactions, and we will consider prescribing you something that will let you keep your job."

And it makes me really angry because I wouldn't have to go through any of this to request an SSRI, SNRI, an atypical antipsychotic, or any of the dozen drugs I've tried in the past that have totally failed to budge my anxiety or help my cognition, but have left me with a fucked-up metabolism, fucked-up sleep, fucked-up emotional affect. As long as the pill doesn't work and has lots of side effects, they hand them out like candy. But don't dare ask for something that works, certainly not by name.

I get a bit strident on this topic and have to excuse myself from talking to people who are seeking help because it's actually kind of dangerous to express all the negativity I have about most psych meds; just because I've had an awful time with them doesn't mean someone else won't get helped. "No, don't listen to me, Effexor won't necessarily send you to the hospital, I'm sure you'll do fine! Especially now that doctors actually listen to you when you talk about withdrawal effects and the meds suddenly not working, which they most definitely didn't do fifteen or twenty years ago, when they treated you like you were making shit up if you didn't have a mental health redemption story like something out of Listening to Prozac"...it's not a very encouraging story to tell someone who is depressed or anxious or otherwise seeking help.

Which is why I like conversations about what the conditions feel like, better than conversations about treatment. Treatment is fraught. It's a dangerous topic.

sciatrix also said: people will get an idea in their mind of what a Real Disabled Person looks like

And this is the other great problem of living like this, because it's not just the meds and the doctors and the inscrutable labyrinth of systems and phones, it's also the world of work, of bosses and HR departments.

I haven't yet mentioned to my boss that I have All These Issues. I should. If I had any sense, I would have gone to HR on day 1, explained it all, made sure my accommodations were set in stone, except I don't trust HR, and so I just kind of sit around hoping that no one will question me too hard about the accommodations, that nobody will give me the You Seem Okay thing when I need some time to sit here blasting music or noise into my ears, when I stop being able to concentrate, when I need to pace or hide or let all my calls go to voicemail. My old boss knew about this stuff and was okay with it, but now I have a new boss and it's very similar to having a new doc, in that I just take forever to trust someone, and trusting them is somewhat based on figuring out their programming, what makes them tick, what their hidden agenda is, because people are hard and it takes forever to analyze and diagnose them as safe or unsafe.

But I don't want to have the conversation. I really don't want to have it right now, because one of the biggest accommodations I need is not being required to travel, in a job that does actually require some traveling. It is hard to explain how I can drive to the store that's only a mile from here, but driving further is too difficult and dangerous. Hard to explain how the system of buying airline tickets and navigating lines and everything is too difficult. Finding a hotel to stay at? I don't understand how such things are accomplished. And yet in a month (gulp) I am going on a trip for vacation. "Why mittens, you are going on this trip for vacation, if you can do that, surely you can travel for work!" How do I explain the difference? It sounds like special pleading. "I'm sort of just the silent passenger on this trip. I haven't set up any of it myself, because at every step I feel absolutely paralyzed. It took over a month of discussion before I could agree to go on a plane." I woke up early this morning because my nightmares were full of, not just planes exploding, but having to deal with People In Authority at the airport, making strange demands that I couldn't understand. And I don't know how to explain to my new boss how everything feels like that, how everything is hard except a few things that aren't?

If people would stop treating accommodations like rewards for being good, my life would be easier.

This is, as it turns out, a running theme in my life. You have to work so hard at being successfully disabled, to get anyone to care, anyone to listen, anyone to help.
posted by mittens at 4:29 AM on August 9 [28 favorites]


People really don't have a very good idea what disability looks like. I've encountered so many acquaintances who think I am so organized, and thus could not possibly have attention or executive function problems. No, the reason why I have all of those elaborate systems set up to failover into each other is because my brain won't do it without help. People who don't need that kind of external system see some sort of virtue display, because it doesn't occur to them that it's there for a reason. They think that when I refer to my phone as my "prothetic memory" I am just joking. I had a phone malfunction last week, and I missed a doctors appointment, two work deadlines, and was tremendously lucky some co-workers stepped in to cover another mistake before I got my systems back in line. Ha ha prosthetic memory isn't modern life wacky. (Also, note to self, create a failover to a cloud reminder system in case this happens again.)
posted by Karmakaze at 6:55 AM on August 9 [12 favorites]


Yeah, one of my big problems is that I've developed all these coping mechanisms that both make me miserably and mask my ADHD. So basically, it seems like I'm both totally neurotic and exaggerating my ADHD, when instead it's just that the seemingly-neurotic behavior is my way of dealing with my ADHD. I really like this comic, which describes the ADHD-causes-anxiety/ anxiety-masks-ADHD vicious cycle.
posted by ArbitraryAndCapricious at 8:25 AM on August 9 [18 favorites]


you want to know how to get literally any controlled substance you want thrown at you by psychiatrists just by asking? and sometimes without even asking? let me tell you the one weird trick:

be a white man. ideally, be a white man with credentials that signal your elite status or whatever. write one well-regarded novel and suddenly a world of benzos and stimulants open up for you — so long as you're also a white man.

okay here's another weird trick: you want to know how to be a condescending asshole who gatekeeps other peoples' disabilities and walk away feeling like you've gotten away from it? be a white man. at the very least, be either white or a man.

as a white man i would be perfectly happy if this site ban-x0red all white men. i'm happy that there's a penumbra of crone-island type spinoffs from this site that i don't have access to. sometimes i think my role on this site is to preëmptively shout down all the other white men, but also: getting super fighty at the drop of a hat is also an alienating white man behavior.

fuck a kyriarchy.
posted by Reclusive Novelist Thomas Pynchon at 8:35 AM on August 9 [1 favorite]


> Yeah, one of my big problems is that I've developed all these coping mechanisms that both make me miserably and mask my ADHD. So basically, it seems like I'm both totally neurotic and exaggerating my ADHD, when instead it's just that the seemingly-neurotic behavior is my way of dealing with my ADHD. I really like this comic, which describes the ADHD-causes-anxiety/ anxiety-masks-ADHD vicious cycle.

oh, wow. it me. this is the first time i've ever seen a description of the relationship between adhd and anxiety that accurately described my experience of the world.
posted by Reclusive Novelist Thomas Pynchon at 8:37 AM on August 9 [2 favorites]


It is life giving for me to read all these comments.
posted by Mistress at 9:20 AM on August 9 [5 favorites]


you want to know how to get literally any controlled substance you want thrown at you by psychiatrists just by asking? and sometimes without even asking? let me tell you the one weird trick:

be a white man.


Why are you saying this? I've been unable to get certain medications for years, because doctors always treat me like a drug-seeker. I wouldn't react so strongly, but I'm currently going through the fucking wringer with regards to treatment -- waiting months to see a psychiatrist, getting grilled about every little detail of my story (in an incredibly upsetting way that I've never experienced before), being told I couldn't take certain drugs because of the potential for abuse. I was even given something after I specifically told them it gave me headaches because "maybe you won't get headaches this time." Oh, I know being white gives me huge advantages, and I know my horrible experience on Medicaid is probably as good as it gets for anyone, which is just a miserable thought. I know the reaction to this comment is going to be "see? I told you white guys get fighty at the drop of a hat." But like, I'm really going through it, with myself and with the mental health system, and right now, in this thread of all threads, I don't want my experience to be invalidated to make a political point.
posted by shapes that haunt the dusk at 9:24 AM on August 9 [22 favorites]


And here's my compulsion to hedge: I'm not saying other people don't have it worse. I'm not saying I don't have huge advantages. I just don't want my experience to be treated like something that doesn't happen, because it does and it's happening to me right now in the worst and most agonizing way. I have literally spent all morning trying to figure out how I can actually get the treatment I need, because until recently, I was under the impression that all it took was getting in to see a psychiatrist. And I don't know what I'm going to do! If I seem oh, so precious and fragile, it's because I'm at my wit's end. I'm sure it looks bad, but this is a thread about mental illness and neurodiversity, and I'm trying to remind myself that I can react strongly or badly to something for reasons other than personal faults of moral character.
posted by shapes that haunt the dusk at 9:37 AM on August 9 [11 favorites]


Honestly? I would actually have said that the secret is to approach mental health professionals with confidence, dressed like someone to be taken with respect, and to self-advocate calmly but firmly to be allowed to give certain medications a shot. Ideally this would have come after having thought out all the arguments and having quick, easy, confident responses, and probably being as charming and polished as possible. I would be clean, well-groomed, make all the right eye contact, and inquire after what's going on with the psych I was talking to.

That this is all stuff that comes very, very hard when you're dealing with mental health episodes is something of a cruel joke. And of course it's all much easier to do if you don't care about the gatekeeping or the reasons that it's in place or respect the authority of medical professionals and so forth. If you do care about those things and submitting yourself to the authority etc., you suddenly get a lot more vulnerable and find it much more difficult to be open.

I mean, I'm white too, but if I wasn't trying very hard to "follow the rules" about self-diagnosis and mental health and doing it all the "right way," it would be pretty easy for me to get access to prescriptions that would be very bad for me. Gender doesn't really come into it. The amount of respect I can project, plus the amount of respect I actually have for the process, are much more salient things that affect access to mental health supports and accommodations.

You can only ask if you don't need it. I think that's the secret. And I think that while visible marginalizations are a big part of who counts as respect-worthy to a mental health professional, I don't think that they're the whole thing, not by a long shot. Especially when so much of that field is female, which means that you're dealing with a slightly different set of assumptions and expectations.
posted by sciatrix at 9:43 AM on August 9 [10 favorites]


> But like, I'm really going through it, with myself and with the mental health system, and right now, in this thread of all threads, I don't want my experience to be invalidated to make a political point.

the key part is being able to signal insider status. being on medicaid marks one as an outsider to people with power. people who aren't white men who can signal insider status have to do all the respectability-politics things that sciatrix documents in order to shore up an image of insider status. meanwhile, i can roll in unshaved and wearing a hoodie and walk out with an adderall prescription.

but yeah i tend to overcorrect for my fear that i'm one of those commie bros who centers class-based oppression too much. i gotta watch out for that... thanks for the reminder.
posted by Reclusive Novelist Thomas Pynchon at 10:11 AM on August 9 [6 favorites]


I think, to be clear, that one of the most important components about signaling insider status is the absence of visible discomfort. If you don't look comfortable, you're hiding something--what is it? Are you One of Us? If you look fearful, why? Are you trying to get away with something? If you don't act like you trust me, the psych, what are you trying to get away with that you think I wouldn't let you have?

Now think about that reasoning and logic as applied to someone with an anxiety disorder or cumulative trauma coming from health professionals--and both of those things can and do apply to white men. Maybe less often than to other groups of people, because white men as a class receive fewer rejections and traumatic encounters that undermine their confidence about entering spaces, but that doesn't mean that the confidence and ability to at least pretend to be confidently in control are something that every white man has--think for example about class-based oppressions as you mention, RNTP, or about men who have been abused by authority figures, or about men who have trauma around being believed by medical health professionals... which... includes... many neurodiverse men.

When we're talking about an inherently intersectional approach to these things, it's important that we don't say "ah, yes, ableism surrounding mental health doesn't apply to white men, only to other groups of marginalized people" because ableism is itself a marginalization in its own right. It has its own rules and its own patterns and its own histories and its own cultures of response and its own civil rights movements. It's not "lesser than" classism or racism or sexism or homophobia or any of the other different axes of oppression and marginalization that we interact with. It is its own thing, and the intersection of gender and ableism is more complicated than just "privileged people don't have anything to worry about because we can get treatment."
posted by sciatrix at 10:28 AM on August 9 [16 favorites]


I've enjoyed reading this thread and seeing how much my experiences have intersected with others. It is, however, no longer safe for me to read it.
posted by thatwhichfalls at 11:18 AM on August 9 [2 favorites]


I would be clean, well-groomed, make all the right eye contact, and inquire after what's going on with the psych I was talking to.

Yeah right, and then they're like, you're clearly blowing your supposed "problems" (aka total inability to function) way out of proportion. Person like you? Probably just have a glorified hang nail, are just always ready to call the drama police, always calling the whaaaa-mbulance. Someone like you always lands on their feet, right? Right.

The truth is that there's nothing you can do. You're not going to get taken seriously if they don't want to take you seriously. IT'S NOT YOUR FAULT. I have gone into offices as an enormous mess with no ability to hold down a job or even take a class, or even FALL ASLEEP with any regularity, I have begged and pleaded...I have also gone in there with my flat and dull and very respectable self and a fancy schmancy insurance card in my wallet. Doesn't matter. Same diff. Just get written off EVERY. SINGLE. TIME.

Even when the doctors are literally saying that they're going to write an incorrect ("less serious") diagnosis on my chart (as in, a diagnosis that THEY explicitly believe is incorrect) because they don't want me to have the "stigma" of the correct diagnosis (again, the diagnosis THEY believe is correct) because of how that correct diagnosis might affect my access to care going forward. Even when doctors spontaneously offer to write to agencies/supervisors/deans to say that XYZ issue is being caused by a medical problem -- but then immediately wave me off when I ask for de rigueur treatment for that specific medical problem. Etc. It's like there's a short circuit in their heads. Someone "like you" must be fine! OK, you're not, clearly you fit ABC diagnostic criteria, but...you don't REALLY need help, right? Must be all in your head or something. You can handle this on your own, can't you, pet? Must be exaggerating anyway. Must be lying somehow, for some reason. Must be trying to pull some kind of fast one. Because you're really making it SEEM like you have a big problem, but someone like you couldn't have a big problem like that, not really.

IT IS BEYOND INFURIATING. I mean that not only is it infuriating, it has caused and continues to cause enormous pain, suffering, and hardship in my life (direct financial hardship included) that my ability to get appropriate medical care is so severely curtailed. Despite it being curtailed only for some Kafka-esque, unknowable reason. Well, and of course this is not limited to just medical care. But I digress.

Please don't blame someone for not getting taken seriously, for not being able to get people to listen to their cries for help, for nobody taking their earnest description of reality at face value.

If someone isn't taking you seriously and just writing off whatever you say based on whatever they THINK someone LIKE YOU would OBVIOUSLY be saying, then...well, that's what they're going to do. And in your head, you can be like, fuck 'em. But at the end of the day you're maybe going to have to accept that you're not going to be getting any help. Unfair and heartbreaking as it is. You're going to have to muddle through as best you can, even if it kills you. Which is its own mind fuck, of course.

My mind is boggled that some people actually do get help, or even listened to. Luck of the draw, I guess.

So anyhow, it's not just you, shapes that haunt the dusk. I'm sure that's cold comfort but...at least you should know that you're not alone.
posted by rue72 at 11:30 AM on August 9 [14 favorites]


hey uhh i've asked the mods to delete a whole bunch of my comments on this thread. apologies, all, for bringing my bad day in here. especially sorry to thatwhichfalls and shapes that haunt the dusk.
posted by Reclusive Novelist Thomas Pynchon at 12:18 PM on August 9 [5 favorites]


Please don't blame someone for not getting taken seriously, for not being able to get people to listen to their cries for help, for nobody taking their earnest description of reality at face value.

Yeah, you know what? You're right. I didn't mean to come off as blaming folks, but I can also see how that reading is fair. And hell, it's also very true that I've also been trying and failing, repeatedly, to get good care for me, too. Maybe I'm de-emphasizing the luck I have had along the way because that feels like a safe way to move through the world, one where there's more control than actually exists.

Everything you've said is perfectly correct and true. Yes. Thank you.
posted by sciatrix at 12:42 PM on August 9 [9 favorites]


Posting in my anon account because I don't want this to show up in my main, not-so-anonymous account's activity.

GAD, depression, CPTSD, auditory stuff, off and on physical disability. I hide the worst of this shit. Lately, I get more and more anxious that I no longer have a socially acceptable reason to not be working, and I'm not killing it at home.

TIL how deeply I have internalized ableism and how not okay that is. That's something to work with.

A lot of people here have said things that reflect my experiences and the way I feel, and I don't feel like repeating them. I will say that AskMe has been my home here, and has been a huge boon in my life, even with its problems. A comment in my most recent question was a little hard, though, because it unknowingly touched on some issues I have on the subject of being a burden. (Pointing to it because nobody I know IRL is going to be here in this MetaTalk.)

Spoons. I sort of read the top half of the discussion, couldn't get further. Scrolling down and catching a couple of things here and there, I think it's good that I didn't. A lot of the time, I feel like I have something to say or offer, but just kind of crap out and don't post because of the effort it takes. I've always tended toward lurking, but I haven't really been around on MeFi for a while because it's just too much for me to engage at all, on top of stuff happening IRL.

This is the type of comment that would have been deleted because I'm foggy and tired today and it feels inarticulate and not useful/new, but I'm going to put this one up, because you all did.
posted by Eolienne at 3:35 PM on August 9 [9 favorites]


(a link to one of the two comments I'm replying to; the second one is right after)

Xany, hoyland, lucidium made a Greasemonkey script for paginated comments. I just tested it; it still works (and on both themes). Though my browser setup hasn't been changed in a while and I'm not on mobile.
posted by redrawturtle at 6:04 PM on August 9 [3 favorites]


I kept up with the first half or so of this thread but not the second because Reasons.

One thing I would like to see change is every twitter thread that gets a FPP also includes a link to Threadreader/similar, because twitter's format is confusing to me. Seems pretty hit-or-miss right now, but that's a courtesy I wish was observed more often. 1+ to really liking metafilter's toned-down, easy-on-the-eyes ui.

I tend to skim more when in a bad headspace. I like the variety of opinions and stories on offer in the comments section, but I think the culture of commenting would improve with an infusion of "I" language -- for example, instead of saying, "what a no-good layabout" (ref. the hikkikomori thread from last week), "I find this situation/article frustrating because x, y, z." Sometimes commenting gets really vicious, and establishing distance/boundaries from the get-go (I am opening up my take for discussion, not my personhood) is helpful.

More generally, I find myself wishing for some common comment structure discussion. I have a development background, so my first thought would be something like "As a [person], I would like [something], so that [something can be achieved]." I'm sure this could be tweaked somehow for detailed analysis of a juicy FPP, but I haven't had the spoons to figure it out yet.

none of this is to say that anybody has to do any of my suggestions!! I'm not cross at anybody for writing what they feel and in the manner that they want to. But keeping up with longer, more interesting discussions can be hard, and some organization of ideas would be helpful to my understanding/retaining information, especially on bad headspace days.
posted by snerson at 7:42 PM on August 9 [9 favorites]


So anyhow, it's not just you, shapes that haunt the dusk. I'm sure that's cold comfort but...at least you should know that you're not alone.

Thanks, I appreciate it. Yeah, it sucks.
posted by shapes that haunt the dusk at 10:18 AM on August 10 [2 favorites]


any person, ever: *acts like an asshole*
12,000 NTs in unison: I bet they have mental health problems
posted by FirstMateKate at 12:07 PM on August 11 [16 favorites]


This is much-belated, but I just wanted to say something here about the food allergies thread. I do not have food allergies nor have I ever claimed to, but I have sensory issues with texture that mean certain foods make me gag. I just want to say that the comments in that thread, for the most part, were validating to me like few things have been before. It is so incredibly refreshing, a paradigm shift, to hear people saying things like JimBennett's fuck this, if someone tells you they can't eat something you respect them enough as a human being not to fucking feed it to them regardless of your opinion on how valid their preference is.

As a child, I had people try to impose rules on me to force me to eat these foods, people tell me to my face that I was morally deficient for not eating these foods, I had people I thought of as friends come up with an elaborate plan to try to trick me into eating them. It took years for my own parents to admit that they didn't understand that I literally cannot eat these foods and how much stronger it was than just a preference, even though I tried to tell them repeatedly, practically daily, throughout my childhood; even when I cried.

I wish I grew up in a culture like MeFi's that just...gets it. I mourn the fact that I never did. But I'm glad I'm here now. Y'all are good people.

(The postscript to all this is that after an entire childhood of being told I basically couldn't exist as a person in the world without forcing myself to eat foods that trigger my gag reflex, I'm in my late 20s now and...yep, it never comes up.)
posted by capricorn at 1:20 PM on August 13 [14 favorites]


any person, ever: *acts like an asshole*
12,000 NTs in unison: I bet they have mental health problems


The flipside is when it's a conversation that intersects with mental health, and a whole bunch of people are talking about how much someone is clearly just an asshole and nothing more. Sometimes it feels like a person's view of mental illness depends on whether or not they think the person is deserving of forgiveness. It's always this black and white thing of whether someone is fundamentally good or bad, like "I'd never do that" or whatever, and then it becomes "oh, they're just sick" vs "they're just a bad person."

Sorry, I'm not really thinking clearly. You're all my people so I'm going to take a second to complain that I'm having a bad reaction to a medication (I think I got way too high a dose) and my fingers feel weird and I keep misspelling stuff and transposing letters, oy vey. That's another question for this site, like does it matter if someone is not feeling well when they post, or what? We only see what they write, not the other stuff about them, and we can get these skewed perspectives of people. Even just if someone is really depressed and negative, or otherwise not thinking the way they usually do. I feel like people on this site hold grudges, like you're on "my" side and I'll remember that, and you kind of have to live with that with some people, regardless of how you were doing mentally or physically when that disagreement/grudge happened. Or not, and it just seems that way when a person gets self-conscious.

Sorry, getting long! At least I feel comfortable complaining about a medication reaction. Boo.
posted by shapes that haunt the dusk at 3:09 PM on August 13 [8 favorites]


I've been largely away from MeFi for a couple of years, which means I've missed a bunch of conversations; please forgive me if I inadvertently stick my foot in something I wasn't here for. I've been anxious and depressed since primary school. I also have a history of TBI, which has given me a lovely case of word salad when I don't have time to put words in the right order. Somewhere in the last two concussions, I found a psychologist who diagnosed me with dysnumeria.

The main reason I don't post any more is that I am terrified of being scolded or shamed when posting, whether on the blue, green, or gray, because my wonky brain injury can take a while to compose a thought I think will pass muster. By the time I get it all in line, the thread has moved on. That's not MeFi's fault, but it does make it difficult to make timely comments.

/sockpuppet account
posted by wingtippedhipster at 12:16 PM on August 15 [8 favorites]


Yesterday I was bicycling and there was an ice cream truck stopped in my lane, so I was moving to pass it on the left, and I must not have looked over my shoulder just before switching lanes -- I thought I had done so recently enough -- and a car honked its horn as it passed me, causing me to brake and thus preventing a collision. I got onto the sidewalk and walked my bike for a block or two before getting back on my bike and back on the street. I felt scared and angry for a bit, because a car horn honk from a few feet away and a narrowly prevented collision does jolt me. And then I cooled off a bit and realized I was grateful for the driver honking their horn, sending me an urgent warning, telling me to watch out, because that stopped me from getting hurt -- and maybe they were going fast enough that they couldn't have stopped in time, and I could. Or maybe they should have seen my situation and predicted what I'd need to do and slowed down themselves. I don't know. But I do know that I'd felt, in that jolted moment, that the honk was an unfair criticism of me, and I was angry at them for criticizing me, and scared of being criticized again.

And as I was walking my bike a bit and reflecting on this, I thought: is this what it's like for some of the people in that MetaTalk thread, people who viscerally feel awful when another commenter criticizes what they've said? Does it feel like a sudden loud honk and the threat of harm, so distressing that your heart beats faster and you need to take a moment on safe ground to check and ground yourself? And if it happens several times, or you see it happen to others, then it makes you want to avoid that road altogether?

(I am NOT saying that all MetaFilter criticism is an effort by the critic to maintain safety, or that I was in the wrong or that the driver was -- I'm just reflecting on how I felt in that one moment and the lens it gave me. And I'm asking to check whether that lens is a useful one.)
posted by diss track able at 1:36 PM on August 15 [11 favorites]


Alright you guys, I went there. Fingers crossed that it doesn't devolve into some stupid discussion about how people with ADHD are just lazy freaks who are faking it to get legal speed.
posted by ArbitraryAndCapricious at 7:50 AM on August 16 [14 favorites]


YAY, thank you, ArbitraryAndCapricious!
posted by mittens at 8:12 AM on August 16 [2 favorites]


If it does, I shall be extremely angry, and I pledge to say so and back you up.

Thank you. I didn't realize until just now how important it feels to me to be able to signal boost to people who have some experience with this shit to go run and look when we talk about this topic. It matters not to be alone.
posted by sciatrix at 8:19 AM on August 16 [4 favorites]


Relatedly, via stoneweaver:

Three ideas. Three contradictions. Or not. Hannah Gadsby gives a TED talk about comedy and telling stories, while touching on grief, Autism, and trauma. "Speech has always felt like an inadequate freeze frame for the life inside of me."
posted by sciatrix at 9:50 AM on August 16 [4 favorites]


Hey, didn't see this thread until now. Thanks for making it.

There's a really complicated relationship between MeFi and my anxiety (and probably something that could reasonably be called C-PTSD but it feels minimizing of others to say that cuz an MD didn't give me permission to - why yes I do have Issues with internalized ableism and authority figures). There have been threads and individual interactions that have given me both great relief and strength: this thread alone made me realize how much I place the expectations on myself of not freaking the normies, by what relief I found from just *reading* this thread, and a host of others too. And that's been super valuable and also makes me sad to realize how much energy I still spend keeping my armor on after how many hours and dollars of therapy and meds.

But also this site has mostly had to be a part of my general withdrawal from the internet as triggering of symptoms I could not afford to have happen with the frequency it was occurring because eventually I would have had to have Conversations about why I kept coming in late and then crying all day. The megathreads have been part of but definitely not all. I don't know if the tiny return to the status quo ante that their removal constitutes will move the needle enough for me to feel like I'm not playing with fire by reading the blue. It sucks but it's also just one small part of a more general process of greatly throttling the amount of information about The World At Large I consume. (and that fucking hurts so bad I don't let myself think about it very much but I used to be a politics obsessive, it was the non-professional domain I tried to remain an expert in and now it will reliably put me in threat response mode and as previously mentioned, that can't be allowed to happen before work 2 days out of 5. So goodbye FB, goodbye WaPo, goodbye LG&M, mostly goodbye MeFi, honestly goodbye unstructured web browsing)

To directly answer the last question, a killfile system might allow me to return to the blue safely and regularly. That's not a feature request, just a statement of the only technical change I can imagine mattering for me. I like the classic interface in its straightforwardness. I like single threaded discussion as eliminating FOMO. I like the relative predictability of moderation even though I would like it to be more aggressive in the interpretation of what constitutes an attack on fellow MeFites. I am very very grateful to pretty much everyone who has worked to make this thread the thing it has been.
posted by PMdixon at 6:25 AM on August 17 [7 favorites]


And to not abuse the edit window as I echo others:

I kinda knew it already, but this thread made me really realize how much I expect conversations about behavioral health and neuro diversity topics on this site to come down to litigating the line between people deserving of care and people who are not.

And how much I'm desperately playing the home game version of that reading along, trying to work out which side I'll be perceived as falling on.
posted by PMdixon at 6:29 AM on August 17 [9 favorites]


Please feel free to skip this, everyone. It's long and kind of impersonal. But if you prefer bullet-point summaries to paragraphs, you're in luck!

I spent some hours and reread the thread to try to summarize some things shared so far, including pulling together thoughts shared by multiple people. None of these lists are in order of priority or chronological; instead I'm sort of trying to cluster related things together. I probably missed or mis-summarized some things so please feel free to add to this, riff, re-state, link to your original comment where you articulated something, etc. And please feel free to keep on commenting with your concerns, experiences, appreciations, requests, and so on -- this thread is open for 2 more weeks.

Other people's behavior on MetaFilter that can be hard to deal with:
  • dismissiveness and blameful/condemning/demeaning comments, e.g., calling people trash/garbage, disparaging large groups of people that other users are a part of
  • ableism & assumptions about therapy, medication, and accountability in posts & comments (such as about awkwardness, etiquette and social norms)
  • dangerously depressing writing about disabled people, sometimes without content warnings
  • assumptions that there are no MeFites participating in/reading discussion who have particular experiences/conditions
  • comments that deny, invalidate, erase someone's lived experience
  • hot takes and jokey one-line responses to posts on serious topics
  • off-topic, unhelpful replies in AskMe
  • pile-ons especially regarding minor misphrasings/omissions
  • certain expressions of despair/doomsaying
  • untagged US political news posts
  • argumentativeness, scolding, shaming, bullying, insensitivity; certain expressions of rage, and anger that has the effect of silencing others
  • unstructured talk-centric meetups in loud places
  • "RTFA" (Read The F___ing Article) when some people have a very hard time reading the article or watching video/listening to audio
  • sarcasm
  • oblique references, responses where it's not clear what comment someone is responding to, and playing an unspoken game with NOT naming a person/thing; relatedly, in-jokes/nicknames/meme references/acronyms
  • lack of assumed good faith
  • offputtingly serious/formal/starched/woke tone/affect, demands for certain kinds of formal education or vocabulary as prerequisite for participation
  • difficulty MetaFilter often has discussing problems that affect men, e.g., mental health issues among men
  • difficulty in threads where MeFites with two different outlooks have a nearly impossible time coexisting
  • friction around labels for our experiences/conditions
  • aggressive gatekeeping regarding who "deserves" accommodation
  • "closing ranks" phenomenon within marginalized group conversation when people from dominant group are also in the conversation
  • responses that don't make one feel heard
  • the megathreads
Feelings/interior experiences on MetaFilter that can be hard to deal with:
  • getting stuck editing a comment/comments for a long time, fixing word order and spelling and grammar, adding/removing hedging, and often discarding the attempt
  • feeling too inarticulate to contribute, especially on the Blue
  • rejection/conflict avoidance/aversion, especially around perceived MeFi consensus on a topic, and if one feels like MeFi is home
  • worrying about miscommunication; the feeling of being misunderstood/misinterpreted and being stuck between taking up "too much space" in a thread and remaining misunderstood
  • relatedly, worrying about being a burden
  • accidentally oversharing/going on too long/being obnoxious or aggressive
  • the difficulty of sharing meta-commentary about one's emotional state
  • processing overstimulation or social pressure as attacks; processing "someone is angry in this thread" as "they are angry at me" or processing "their opinion differs from mine" as "they are talking negatively about me"
  • worrying about getting into trouble; fear of being harshly jumped on; managing the distress of being criticized
  • having a hard time reading long, text-heavy threads with long comments; skimming and missing things
  • avoiding commenting in fast-moving discussions and subtopics within them because of inability to keep up and respond to follow-ups afterwards; feeling like the conversation's passed by and the window to speak has passed, like the comment one would make is not sufficiently new/useful
  • difficulty commenting with fine motor control problems
  • difficulty participating only in words, instead of being able to draw or share images
  • trying to make a single comment when different parts of you have different things to say (such as in multiplicity); a different part of oneself can't be heard
  • making short "yay"/"thanks" comments to avoid misstepping in longer comments
  • managing impulses/impulsiveness to comment insensitively in sensitive threads
  • addictive desire for favorites
  • feeling rejected when other people leave the site (temporarily or permanently)
  • feeling guilty for flaking on obligations like card/cookie/Quonsar swaps
  • worrying that someone else is holding a grudge for a past disagreement
  • managing lingering emotional consequences from gross site threads/bad interactions
  • feeling unheard by moderators or other members
  • feeling exhausted and pressured and concerned that effort might be wasted when trying to work out problems in private (MeMail or private email with mods)
  • frustration when mods delete a comment and responses to it, since sometimes that removes useful educational work that was in the responses, and reduces ability to learn by observation/discussion, and build camaraderie among responders
  • trading off between posting about disability-related topics and dealing with ableism in comments, or not posting at all
  • exhaustion when educating neurotypical people or because the work of carefully building trust relationships feels wasted
  • not knowing what MeFi tools are available and what they do
  • discomfort lurking in MetaChat, because of public list of users currently online
  • difficulty coping with unclear social expectations, and with not being able to predict what other people want or will do
  • feeling surveilled in spaces neurotypical people can read
  • concern that one's Front Page Post format isn't what others want
  • easy to get sucked down rabbit holes, accidentally not go to bed on time, read compulsively, opening lots of tabs, hyperfocusing on a thread/argument
  • migraines and screens (especially when trying to read something long)
Parts of and experiences on MetaFilter, and choices in using it, that can be/have been great:
  • compassion and kindness and gentleness, in comments, in MeMail, in email, face-to-face
  • do things at your own pace, including writing/conversation
  • comment at the length you want -- ok not to condense, ok to write paragraphs
  • topic-specific threads; easier to choose what topics to read, participate in, skim
  • direct, warm, responsive communication, including clear mod decision explanations and redirections
  • people who give you the benefit of the doubt
  • comments and responses that acknowledge the other person better and de-escalate conflicts
  • people who explicitly structure their comments/posts to make them easier to engage with
  • a culture that gets it about disability a lot more than some other in-person and online environments do
  • interesting varied distractions and indulging wideranging curiosity
  • connecting with people with lots of different lives/experiences
  • people who are open to themselves & other people changing, growing, rather than being fixed in identity
  • people coaching each other in initiatives like #julybywomen
  • context-specific moderation style
  • taking breaks when one needs to, context-specific to a thread (such as after making 2 clarification update comments), or regularly
  • choosing to initiate some MeFi-inspired conversations away from MetaFilter, in smaller groups with better good-faith assumptions and more resilient relationships, or in MeMail with people who explicitly say they're open to getting MeMail
  • recognizing that it's ok to just listen to/read a thread and that's not necessarily a passive act or the same as being silenced
  • noticing dominant-group fragility in feeling sensitive about being criticized or having said something regrettable
  • AskMe: norms (such as not arguing with each other), narrower scopes, fairly short threads and fairly short responses, reduces the risk of opening lots of tabs (similar sentiments regarding FanFare)
  • mentioning relevant neurodivergence facets in comments on topics on AskMe
  • helpful people, especially in AskMe, talking about mental health & trauma, generously sharing experiences, giving each other language to talk about those experiences ... not feeling alone
  • activity-structured IRL meetings
  • flag-with-note
  • the edit window
  • instant preview under the posting box
  • the plain background/visual style, non-paginated layout, customization available, flatness of threads, no banners/floating images
  • OpenDyslexic font
  • using favorites as a lightweight way to participate without commenting, or after it feels like conversation has moved on, or to give positive feedback
  • absence of pushy notifications
  • the megathreads
Tools that help us use MetaFilter better: Some broader ideas that might help?
  • members (including neurotypical and able people) pushing back on ableism in threads
  • commenters adopting a habit of explicitly quoting/linking/citing the comment they're replying to
  • more "I" language and explicit explanations of desires and goals in comments, especially to replace quick-take assessment language
  • mods being more attentive to comments that, in context, are attacking other members
  • having some guidelines for vocabulary in discussing disability, mental illness, & neuroatypicality
  • having some conversations/guidelines about sensitivity to expressions of anger, and about triggering and non-triggering expressions of anger
  • expectation management: encouraging posters to be clearer about whether a thread is more for/about "people with X" or "people in close association with people with X"
  • a heads-up warning network for "this comment thread is gross", maybe pretty informal and ad hoc
  • a kindness support space (inspired by KindWords)
  • MetaChat functionality & norms clarification & newbie-friendly scheduled times to introduce new folks
  • improving tags, tagging US politics consistently, organizing more by subject, tagging individual posts more
  • lengthening edit window
  • being able to "snooze" one particular user to not hear/read their comments for ~30 days, or block/killfile them
  • removing or better hiding favorite count stuff
  • improvements to mobile friendliness, especially for Recent Activity
  • Recent Activity: more thread-specific context cues so they don't all look so alike, configuration or windowshading/expand/collapse options
  • front page posts that link to Twitter also link to Threadreader or similar, as alternative to Twitter's formatting
  • opt-in email notifications for My MeFi
  • a My MeFi-type filter that prohibits instead of specifying what to allow -- displaying all content except certain tags/keywords
  • an opt-in way to make it easier to track where one stopped reading when one comes back to a long thread in a browser tab (perhaps via user script/browser extension; see tools in list above)
Some questions for the mods:
  • is it possible for the mods to at all tailor their corrections/notes to particular users, to respect that user A wants stuff in public and user B prefers in private?
  • could we know whether any of the mods ID as neuroatypical, and whether all of the mods are allistic? and have you ever talked with the Autistic Self Advocacy Network or similar orgs about resources/training on supporting your neuroatypical users?
  • have you run into ideas for structuring comment or comment threads in some way relevant to snerson's question?
posted by diss track able at 12:15 PM on August 17 [9 favorites]


That's a very helpful roundup, thank you very much for devoting the time to assemble it! We'll be having a staff meeting tomorrow and can address some of these points in more detail after that.

Just quickly here, I can address your first question ("is it possible for the mods to at all tailor their corrections/notes to particular users[...]?"). Speaking to my own practice, yes, I already try to do this when I'm aware of a preference, just like trying to keep in mind other things I know about the individual member when corresponding, noting, etc. BUT at the same time, I don't want to set an expectation that people can rely on only being addressed privately/publicly according to preference. We may not be able to follow people's preferences in some cases.

To your second question, I do have my own mental health/psychological stuff that I've talked about at times elsewhere on the site, and that stuff definitely influences my engagement with the site. I'm not autistic.

To your third question, I'm not totally clear what you have in mind. I took snerson to be offering an informal member-to-member suggestion for how people might choose to shape their own writing?
posted by LobsterMitten (staff) at 2:27 PM on August 17 [2 favorites]


Dittoing the thanks for that roundup, diss track able. I'll add some thoughts to what LM said above.

The big rundown of things folks have talked about finding challenging or difficult or unpleasant kinda hits two big things for me.

A, that there's a lot of overlap there with some of the things folks have talked more generally about having issues with as far as MeFi (and more broadly internet and social media) discourse, in terms of how conversations can feel unnecessarily hostile or uncharitable, how we can end up having situations where instead of a constructive exploration of a difficult or complex topic with a lot of varied voices and experiences coming in, we end with more of a confrontational engagement where things shut down or escalate into an argument, leading a lot of folks to just remove themselves from the discussion instead of participating. So I think that's something we need to continue to talk about and think about as a community. Some of the ongoing documentation rework stuff we're doing is aimed at outlining conversational strategies and site expectations, and the mod team talked about some of the details today during our team meeting and will try and fold some more of these thoughts into the work we're doing there.

We're also looking at some of the tech-solution stuff, sizing up where there's a good mix of utility and reasonably simple implementation where we can roll some of that into the schedule of other work we have going on on the site.

B, that one of the challenges in all this is recognizing and trying to find a good balance to accommodate a pretty broad slate of potential points of friction or discomfort for a wide swath of MeFites. Nobody is checking off every item on that roundup, but every item on that roundup is something that's an issue for someone and maybe many someones. So finding an approach to helping folks feel comfortable is gonna involve us trying to be more aware as a community and as a mod team of that stuff, but in practical terms what we can actively do in terms of changes or explicit actions is gonna be more limited that what we can just work as a community to have on folks' radar and encourage folks to on a person-to-person level leave space for. Some of this stuff, probably the most concrete progress we can make on the site is to just have more people be aware in general that these are challenges for some people.

For your three questions:

1. Like LM said, this is something we already do try and make an effort on; if someone has let us know directly that a specific kind of contact does/doesn't work for them, we'll try to make a literal note of it and accommodate that where we're able. But it does have practical limits; as a mod team we have a very lopsided few-to-many relationship with the members of the site, and where we can try to accommodate specific notable desires in some cases we can't do that for several thousand people, and we can't necessarily accommodate every desire or do so to the level of specificity someone wants. Sometimes folks' wants are at odds with a basic practical issue with how MeFi works.

So it's a matter of compromise, and of talking it out a little if a given person wants/needs a specific thing to happen, where we can sort out expectations there. Totally fine to reach out to us about it; not as workable to assume that e.g. mentioning it in a comment means it will be consistently taken up. We'll make what effort we can to work with any individual person on this stuff but it does need to be a clearly communicated and mutual effort for that to work well vs. turning into a frustrating thing where someone feels like they communicated a desire and then isn't seeing that met, therefore they're being deliberately ignored or dismissed. The reality is we try very hard not to ignore or dismiss people's needs but we have a very big group of people to look after and stuff is gonna slip through the cracks sometimes. More communication is pretty much always better and welcome, vs. folks settling into a sense of the mod team not caring or wanting to bother; we're here to try and help create good outcomes on the site for folks but we need help with that too sometimes.

2. could we know whether any of the mods ID as neuroatypical, and whether all of the mods are allistic?

I'm not upset that you asked this question, but I want to be clear that I'm uncomfortable with it being put to the team. It’s one thing to explicitly open the floor to sharing that info, for people who want to share; it’s another to point-blank expect that staff need to publish their mental health or neuroatypicality info to the whole web. I understand the somewhat specific context here so I get why it's being asked, but this is a site where we try very hard to let people be self-determining and self-identifying about such things, and to have whatever level of privacy about their personal stuff as they want, and that includes the mod team.

I'm fine with anybody on the mod staff talking as much or as little about this stuff as they personally choose to, but I think it absolutely needs to be that—an uncoerced personal choice—and only that, same as for anyone else on the site.

There's a sort of bigger and unrelated issue of some of the problems with the historical visibility of mods, or expectations of same, vs. the reality of what's expected of or allowable from mods, that is it's own conversation for its own day but is reflected in part by the outsize exposure we have to harassment based in part on personal details associated with our work here, and that contributes too to me being uncomfortable setting an expectation that anyone on the team needs to talk publicly about mental health or neurotypicality stuff.

and have you ever talked with the Autistic Self Advocacy Network or similar orgs about resources/training on supporting your neuroatypical users?

Not in any formal way, though among the mod team I know there's some familiarity with ASAN and stuff related to their work has been on my radar thanks to discussion on MeFi over the years. It's something I can take a closer look at in terms of potential resources, yeah.

3. Similarly to LM, I'd be glad to hear more details on your thoughts here; I loosely agree with snerson's thoughts there as things that could help as general user-motived strategies but I don't know if you had something more structured in mind there.

And thank you again for the roundup, and to everybody in here for their sharing their thoughts and experiences. It's been helpful to me and to the rest of the mod team, and I imagine to a lot of folks on the site, to have a chance to better understand some of where folks are coming from in their personal perspective and their experiences of the site and of communication and online interactions in general.
posted by cortex (staff) at 3:34 PM on August 18 [2 favorites]


(I would appreciate folks publicizing this thread by, if you think it's relevant, linking to it briefly in ArbitraryAndCapricious's front page post about the experience of ADHD; I think it's most appropriate to confine my comments, as this alternate account, in this thread.)

Thanks, LobsterMitten & cortex, for your responses, and to all the mods for putting time into discussing and reflecting on the experiences shared in this thread. I won't spend a bunch of words quoting and agreeing, partly in the interest of concision, but also because I don't want to seem to be speaking for the dozens of folks here.

Sorry for being unclear on a few things, and thus insensitive in one of them.

The easier bit: about snerson's comment. Yeah, I also think this is about something individual users could choose to do, to organize our thoughts in a way that provides an explicit structure that would be easier for some other members to read. I meant to literally ask whether you've run into more ideas along those lines, for individual comments and for comment threads. I'm thinking it might be interesting for a group to try as an experiment sometime, especially in, say, a MetaTalk thread -- set the expectation that each commenter should try to comment in that structure.

And then -- I meant to ask my questions about mod demographics literally ("could we know" as in, "is it ok to ask this") and applied to the whole team (as in, the answer might be yes or no in general, but particular mods wouldn't be named -- or, the answer might be, it's not ok to ask/answer this, because even giving a general answer might lead to inappropriate curiosity about individual moderators, outing, gossip, and so on). Sorry for being fuzzy in how I asked and thus insensitive in the implications of my question, and thanks for your clear answers.
posted by diss track able at 6:12 PM on August 18


Also thank y'all for the crouton petting zoo, which I love.
posted by diss track able at 6:36 PM on August 18 [2 favorites]


Ah, I get you on both fronts, diss track able. Thanks for clarifying, I understand where you were coming from now.

As far as other ideas in the vein of the stuff snerson has mentioned, I can give a vague yes: there's certainly ideas we've run into or talked about internally about how conversations can go—and what conversational choices folks can aim to make—to help keep stuff more constructive and structured and collaborative rather than confrontational or argumentative, to help people be and feel heard and supported in rather than excluded from or just kinda scared/bummed out of a conversation. Active listening, active communication, making space for other folks, deescalating conflicts, building onto a conversation instead of going tug of war on it, etc.

I don't have any specific thing to point to there as a resource off hand, but trying to talk about some of those ideas, and characterize and provide examples for what can work well is one bit of the documentation work we're doing, and it may be one that in particular will benefit from getting additional community contributions over time to build out a shared resource for folks on (and off) the site in trying to make communication stuff work better.
posted by cortex (staff) at 7:03 PM on August 18


I've been trying to flag more when I see language that is ... Oh crap I forgot the word that means when "normal" people say something that puts not "normal" people down and don't see their bias (there's my mentally interesting brain showing itself). It's been hard to over come my PTSD and anxiety to flag and to leave a note to the mods. Maybe we could start doing more of that if it's an ok thing with the mods?

Really hope people can read and understand that.
posted by kanata at 7:33 AM on August 19 [4 favorites]


Yep, flagging stuff like that with notes is absolutely useful for us on the mod team, totally good to do it! (The general word that jumps to mind there is "othering", though I feel like I'm failing to retrieve a bit of vocab too that's more explicitly focused on mental health and neurodivergence stuff.)
posted by cortex (staff) at 7:41 AM on August 19


I'd just like to thank the OP and the mods and everyone who's commented here and everyone who's read this thread but forever reason didn't want to or couldn't post. Metafilter being a safe and inclusive space, even though it doesn't always get it spot on, has had tremendous influence in my life and making me a better person. I'm so grateful for how the people here work hard to try to be better people. I'm proud of all of us.

I have medically-managed depression and anxiety stemming from PTSD. I should probably be flagging content more to the mods where I get triggered. Things that seem so innocuous can really send people with these kind of mental disabilities into a tailspin.

---

This isn't a Metafilter example, but one thing that I'm fucking terrible at getting done and turning in on a timely basis is expense reports. I regularly (monthly) put hundreds of dollars on my personal credit card for work-related expenses and even though I have time blocked on my calendar every month to complete an expense report, I will let them sit for months on end. This sounds ridiculous, I know, but they build up month by month and by the time 2 months have eclipsed it's become an unassailable mountain that's too big for me to even consider going to the trailhead on, let alone climbing. And so it just grows, month after month - the summit gets further and further away and it just feels even more out of reach for me. I throw myself head-long into client work and make my clients and leaders super happy with my work product. I'm the guy everyone can rely on for anything, but with a dirty little secret of un-submitted time reports.

In my last job, which I just left, I was warmly thanked by my entire C-suite because of the hard fucking work I had put in over a year and a half of growing a key new account for them. They knew I had worked bonkers hours, had terrible commutes, and had shepherded the account through a bankruptcy. Everyone appreciated me and it felt good to actually have a going-away party thrown on my way out the door.

But of course I was in my last 2 weeks finally working on 8 months of un-submitted time reports. Which I got submitted, in my last week. My CFO asked me to reformat them all to make his job easier, so I did that as well. Then, on my first day at my new job, the week after leaving the old one, I got an email from the CFO that started with this:

I’ll save the lecture on how unprofessional it is to submit almost a year’s worth of expenses on your final day of employment as I’m sure you’re well aware.

And boom, I was in a tailspin. If you've never been in one, allow me to describe it for you: imagine being swung around in the air in circles by a giant that is holding your feet. The g-forces are pulling you away from your feet so hard that you can't reach down there with your feet to try to gain control of the situation. You are completely at the mercy of the spin. You feel physically ill.

Fortunately I was able to get on the phone with the mrs. and she was able to remind me of the good things that helped me from, as we call it, "getting the bends." We had to use that term to describe something that is perhaps more commonly known as "running up a ladder" because a former toxic boss / workplace used the latter and a book written about it to psychologically manipulate their staff, which was harmful for me to see on a leadership team. I digress. The point is, she was able to help me not rise too fast based on my anxious response to a passive-aggressive, shitty little comment from a guy I never met about what amounted to a few hundred dollars that the company wouldn't have to pay me because I got my expense reports in late. She reminded me of all the good things I had done at that company, and how celebrated I was even in my departure. She reminded me that I have a doctor-diagnosed mental disability that directly impacts my ability to get this specific task done. She reminded me that I can't know what's going on in that CFO's (tiny) brain or what stories he is telling himself or why he feels it's OK to type at people that way. She helped me feel empathy for him if that was my job and I got 8 months of expense reports from a well-respected consultant on his last week with the company. She helped me not respond to his email, which wouldn't have helped anyone.

---

I don't know if this helps in any way, but seemingly innocuous comments by Metafilter users can have these reverberating, hugely damaging effects to people on this site who struggle with mental disabilities. I don't really feel like linking to a bunch of threads, but there are specific ones that come to mind where I was roundly mocked, spoken down to, insulted, and berated for having an opinion on something as stupid as whether or not the postal service is doing an efficient job with the money it operates with. Who cares? Hell, in that single dudes committing suicide in Wyoming thread we were a good 30 comments in before I pointed out that we should preface content like that with links to help for people. I didn't dare speak up with an opinion beyond that, even though I'm a middle-age white male with a mental illness and access to guns - the whole focus of the damn post. I guess I just know better.

And then there are the threads where people are able to gently remind people of things they probably already know in ways that foster productive conversation that just builds everyone up, like this one. I try to stay in these places.

My mantra for the 2nd half of my life, however long it lasts, and regardless of who first said it, is: Be kind, for everyone you meet is fighting a hard battle.

---

Also, since it's related, I should follow up on my friend Lexi, who we knew here as Soulbee. I think I me-mailed a few people at the time, but for the sake of anyone I didn't reach when I did, for the record (from an email from Lexi's sister Haley):

I know that I wanted to reach out to you in the past, but to be honest, I can't quite remember if I did or not. The years following her death were a little blurry.

There was a lot of talk on that site about the cause of her death. I'm not sure if you ever got clarity on this. The autopsy revealed that she did not kill herself...she suffered a heart attack. Something about taking an old Rx in lieu of one that she had run out of and couldn't get a refill in time for. If there's anything else you want to know, I would be happy to talk - phone or email. Also, please feel free to share that info.


---

I guess my main request would be that we preface discussions of these things with links to help for those who might need it. Goodness knows we have plenty of people here who might.
posted by allkindsoftime at 2:00 PM on August 19 [8 favorites]


"Maybe we could start doing more of that if it's an ok thing with the mods?"

Yes, this is an intensely helpful thing to do! We might not be aware a word or argument is problematic or a dogwhistle, in which case telling us that is suuuuuuper helpful; or we're parachuting into the middle of a thread that hasn't been problematic to look at a sudden problem (or a new mod has just come on shift and isn't up to date yet), and you have immediately provided us context for the troublespot, which makes it much faster for us to get up to speed.

Some things we can just delete on sight, but many more things are context-dependent so you read back two comments ... and realize you need to go further back to understand what the dispute is ... and then further back, and then you give up and go to the top of the thread to read it all in order, and by the time you get back to the problem and understand what's going on, it's 10 minutes later and there's four enraged responses. So giving us context is VERY helpful!
posted by Eyebrows McGee (staff) at 5:49 PM on August 19 [3 favorites]


allkindsoftime, I just wanted to say thank you for sharing your work experience, because it sounds so close to mine!

I'm not sure whether to answer in detail because the thread has moved more toward metafilter-participation-specific stuff and, well, there's that anxiety that I'll start chattering in the wrong place, so I won't do that, but I've been thinking about your expense reports for half an hour now, and thinking about all the things my coworkers are unable to do, that I'm able to do without any problem, and I feel a little flickering flame of disgruntlement that they're able to cheerfully not do the things they can't do, without worrying if anyone will think badly of them. "Oh, you can't do pivot tables? Clearly a symptom of undiagnosed mental illness." "What's that, you haven't found this search feature that's been in our software for a decade? You should get that checked out." Whereas I try to hide my lack of ability to navigate expenses or anything to do with money because everyone else can do those, so clearly that makes me ill and bad.
posted by mittens at 4:48 AM on August 20 [7 favorites]


We might not be aware a word or argument is problematic or a dogwhistle, in which case telling us that is suuuuuuper helpful

I think I am probably speaking for more than a few of us when I say that you have no idea how psychologically SAFE that statement makes me feel. Thank you.
posted by allkindsoftime at 10:05 AM on August 20 [3 favorites]


suuuuuuper helpful

also is it just me but whenever I see someone type a bunch of voooowels in a row i wonder if they are normal like me where they push the "o" button 4 times in a row as they are typing or if they're the kind of maniac that holds down the "o" button and then releases it after they feel they've gotten enough vowels in a row. I wish I could be that edgy but I'm just not.

posted by allkindsoftime at 10:12 AM on August 20 [3 favorites]


I do both and it absolutely depends on my mood and mental state; mostly I just tap several times because having control over the outcome beats out the expressive chanciness of depending on autorepeat to not somehow destroy something

slack does this thing where it doesn't autorepeat but instead brings up diacritical variants on a letter, which is frankly a million times more useful but also slightly disappointing

posted by cortex (staff) at 11:52 AM on August 20


I feel like the Joe Rogan thread, at least for me, is turning into another one I'm going to have to step out of. At this point, I don't know how to separate shame from whatever is described here.

And I don't disagree with anything that they say! But I tried to explain the attitude therein to my therapist today, and she basically said that the Metafilter consensus, such as it is, is far too extreme to be implemented in real life.

I live with a filter of "how would the Blue respond" on all my actions, and it turns out that you can argue yourself out of pretty much anything, if you don't want to impose on others! And that voice is really convincing, because I can generally back up any negative thought I have with a comment reference.

I feel like I'm not trusting people to handle their own reactions if I make decisions based on our relative privilege. Simultaneously, if I just go ahead and do things, I can't trust any reaction I get, for the reasons Bagel describes. Finally, I can't trust my own perceptions of either their reaction or my own behaviour, because of my own inbuilt blindness.

This might be better for Ask, somehow, but... how do you reconcile those three things? Because I think they're all important, true concerns, and I can't give up on any of them without feeling like I'm failing morally. But holding them all in my head at the same time means that, basically, I try not to have any but the most anodyne interactions with people, just in case.
posted by sagc at 7:31 PM on August 20 [4 favorites]


I don't know if there's any specific takeaway from the above topic, but: I don't know that Metafilter is able to deliver a bite-sized philosophy of how to be AMAB and deeply ambivalent about that, but I really wish people wouldn't try; I really, really, really wish that folks were better at talking about how people should behave without using the sort of general, "if only men were empathetic" phrases that I often see. I'm very in touch with my feelings, and can't help but read feelings into everyone else, too - but that's just one example. CrystalDave's comments in that thread were great, I think, and I wish that people had been able to discuss that, rather than just coming in with "have you considered making yourself smaller?".

Like, their "male-with-shrug-emoji" gender descriptor is how I feel, but these discussions make me feel like I need to somehow publicly disavow my gender - which gets into a whole other set of anxieties that came up in the thread on non-binary portraits. Actually, I'd like to hold that thread up as a conversation I really liked - experience-based, and in a way that I found really inspiring/hopeful on a personal level.
posted by sagc at 7:40 PM on August 20 [4 favorites]


I don't think you can hold all of these things in your head at all times. At the same time, I get the impulse to try, because that's literally what is being asked, but also, I don't have the cognitive load to do that.

I'm also terrified of taking up space, but also, I want to hear what other people have to say, I want to have this space, I want to have these conversations, so I am going to speak anyway. I want to know what all of you are thinking about. I want to read that. I'm scared I'm talking too much, in that thread, in this one, and. well. I'm expressing that fear because I think lots of people here are expressing that fear, and I think maybe if we all express it we won't be as scared to speak?

This is actually part of what I mean about giving up shame: it is not my job, as a white woman from a relatively wealthy background, to solve all race and class oppression by my own actions or lack of action. It cannot be done. At the same time, it is not permittable to completely remove myself from the great work of undoing these injustices. So I do what I can, and I am not ashamed of what I cannot do. I give myself permission to release the shame by telling myself that centering my emotions of shame prevents me from doing work to use my unearned privileges to help other people get legs up.

Mostly. In theory. I'm great at giving advice I can't follow, of course.

I have a lot of thoughts about, about the things we say when we talk about morality and injustice being driven by trying to get people who don't take it seriously already to listen, and assuming that we won't be heard and fully listened to in good faith... and that, in doing so, we impose too heavy a burden on people who hear, listen, and then try to respond in good faith by doing everything at once. It's so hard to write about this because I have the impulse to shake my finger and go, like, "don't think this releases you from having to care about sexism" every time I talk about men, in part because most of the men I deal with day-to-day don't care enough to do a lot of basic things, and I'm really thinking about them when I'm shaking that fist. There's an awful lot of communication that isn't really about the people in the same room as me, and that's common.

But at the same time.... it's the ones who are already in the choir listening, and quivering, and trying harder and harder with every reminder who suffer most by that. And I don't know how to balance those things. I don't know that they can be balanced, except by trying to talk about shame and defuse it.

And I think that there is an awful lot to be said in that conversation about being honest about one's actual abilities to effect change that is heavily influenced by disability thinking. Things like: sometimes we cannot do everything we want to, because we have limited resources, and we have to budget what we can do and what we cannot do. Things like: sometimes it is not immediately obvious what one person can do to an observing person, and we should probably not assume that we can tell what other people's contexts are. Things like: by understanding and honoring our limitations, we can achieve more things and better things than we can by trying to push past them and doing damage to our bodies and minds and hearts.

When this conversation ends, I would like to try to hold one about disability and ableism generally. I think I would like to try and draft something like that on the Wiki, although I don't know how the Wiki's culture works, and I think I would like it to be collaborative. Because one of the things that is weighing on me as I think about engaging with this conversation is that... I feel like I'm talking way, way too much, and like I'm way too over-invested and smothering people. I don't want to talk over people. I want to talk with people.
posted by sciatrix at 7:54 PM on August 20 [7 favorites]


That's a fantastic comment, sciatrix. On the topic of speaking too much, I appreciate everyone speaking here a lot; it's given me a lot of ways to articulate things I didn't know I needed to articulate, and a lot to think about.

One thing that short-circuits a lot of the concerns above, for me, is getting out in public and doing things; of course, that's sometimes easier said than done - see the concerns above - but it's 1) much easier to just... do the right thing in the moment, and not have to describe yourself and your mental state while also doing the right thing, and 2) the effects are generally clear. A lot clearer than wading into a discussion where, at worst, I disagree with how ideas are being presented, just in order to split hairs.

The thread about the anxieties of the managerial class seems to be attempting to wrestle with more or less the same question regarding class, interestingly enough.
posted by sagc at 8:32 PM on August 20 [2 favorites]


I think I would like to try and draft something like that on the Wiki, although I don't know how the Wiki's culture works, and I think I would like it to be collaborative.

Totally fine to use a page on the wiki for that; there really isn't a culture per se there beyond just not unilaterally deleting someone else's stuff without discussing it first, etc. So setting something up on a new page and inviting interesting folks to collab is all there needs to be to it.
posted by cortex (staff) at 10:33 PM on August 20 [2 favorites]


Thank you again, to everyone who is contributing as well as those who are thoughtfully reading this thread.

It's helpful to see others thoughts here, as it makes me feel more comfortable with myself, as opposed to the usual "what the fuck is wrong with you, you are a horrible person" thoughts that are ever-present while I am awake.

Talking about it here, even in a dedicated thread for it, in a group where I feel relatively safe saying anything about my own conditions - it's still hard. I still feel mostly closeted when it comes to dealing with ADD/ADHD/Depression. Even here, I was afraid that I was going to get some sort of invalidating response that would make me wonder if I really was just a fraud or just too lazy to be like a normal person.

The very first person I told about therapy/meds was a long time friend who turned out to have some rather negative feelings about the whole thing, who ended up raking me over the coals for it. We are no longer friends, but not directly because of that.

I also told my prior wife about it, who was fine with it until shortly after we were actually married, when I saw her true feelings about it and learned that I had exhausted all of her patience with anything related to it.

Many other places where I've tried to open up - in person and online - this pattern has repeated, and it's only recently in my life that I've found people to be more understanding. It's been a good way of filtering the places I want to be and the people I want to be around, I guess. After I posted my earlier comment, part of me was thinking "I'll never be able to come here again" as I knew I'd have to see any replies or fallout from it and I didn't know if I could take it.

Point to this is that I have a history of opening up and showing vulnerability and then being summarily gut-punched repeatedly while I'm open. It's really really hard - even here, in a safe thread that many won't see - to allow myself to be this vulnerable. It's even harder when you come from a background of abuse and gaslighting, as I do.

I realize this comes down to effectively "thank you all for not being shitty people" - but this is the world I have lived in for some time, and I'm honestly relieved to see that I'm not being beat down by anyone here. And if I didn't come back, I would have missed a lot of the great comments here.

I really have no idea where to go from here in this comment, yet I feel a need to write more. A typical person would probably just end it earlier, but I feel this need to declare END OF COMMENT or similar, and I don't know why. Probably because most of the conversations I've had around any of this that doesn't immediately go horrible places - even some positive ones - seem to end on this awkward and incomplete note, and just sort of dissipate.

Anyways, lots of love, and thank you all again. END OF COMMENT
posted by MysticMCJ at 11:30 AM on August 22 [8 favorites]


(Semi-related, I'm curious how many others here just get anxiety over seeing any number next to the MeFi mail icon. On to of my fear that I'm going to be attacked in some way despite the fact that NOBODY here ever has [but they could at any time, right?!], it's another metaphorical pile of things for me where the larger it gets, the less likely I am to ever deal with it.)
posted by MysticMCJ at 11:33 AM on August 22 [6 favorites]


Haha, I CRINGE when I see mefi mail come in. Even when it's someone I'm looking forward to hearing from. Because...what if it's not them? What if it turns out I said something awful in a thread, and someone's going to tell me all about it? But then I'm anxious about all kinds of messages...I can't bear voicemail. Or real mail. Or Facebook messages. Basically, nobody ever talk to me ever.
posted by mittens at 12:06 PM on August 22 [2 favorites]


Voicemail boxes exist only so that they can become full and deny people from leaving further voicemails. I relax considerably once the number of voicemails stops incrementing, as it means that there will never be a new one.
posted by MysticMCJ at 1:15 PM on August 22 [7 favorites]


I have total meltdown anxiety about text messages and memail and email from friends (other than the about eight people in the world I am actually comfortable with), and it's not even that I worry that they're mad at me. I just get totally stressed out about how to respond and go into avoidance mode and then feel bad that I have't responded and then don't respond because it's been too long. I really need to stop doing this, because I think I'm making people think I hate them.
posted by ArbitraryAndCapricious at 1:21 PM on August 22 [6 favorites]


You were very pleasant in our MeMails, and I like you quite a bit as a result! I hope that helps. I do the exact same thing and even have one unanswered MeMail where I must have misunderstood why the person wanted to talk to me when they did respond with someone I didn't expect at all. That makes me on edge just considering, woo.

And I don't disagree with anything that they say! But I tried to explain the attitude therein to my therapist today, and she basically said that the Metafilter consensus, such as it is, is far too extreme to be implemented in real life.

Yeah, it's not so great when you're dealing with extreme depression/anxiety.
posted by OnTheLastCastle at 2:02 PM on August 22 [3 favorites]


This is the best post I've ever read on this site. Thank you so much, diss track able.

Also, edit to add since I'm reading some later posts.

And as I was walking my bike a bit and reflecting on this, I thought: is this what it's like for some of the people in that MetaTalk thread, people who viscerally feel awful when another commenter criticizes what they've said? Does it feel like a sudden loud honk and the threat of harm, so distressing that your heart beats faster and you need to take a moment on safe ground to check and ground yourself? And if it happens several times, or you see it happen to others, then it makes you want to avoid that road altogether?

Yes, to me it is a complete adrenaline spike almost exactly similar to closely avoiding danger/being startled in the worst way. Fight-or-flight at max only the flight is wanting to not exist and the fight is extreme anger at being hurt. It fades similarly to a big scare, but an overall mood can persist via rumination for a long time and reoccur just like flaring grief/etc.
posted by OnTheLastCastle at 2:19 PM on August 22 [7 favorites]


I know I'm super late to the party, but this thread was my impetus for finally joining metafilter after a decade lurking (I'm really not a joiner). Been reading along all month, crying extremely manly tears and feeling like I really do belong here, so thank you all for posting, you're amazing people and I'm grateful for all your labor.
posted by captain afab at 10:05 PM on August 23 [13 favorites]


I haven't kept up with this thread (or, like, my email and text messages*) for the last couple of weeks, as I've been dealing with a family death and also on holiday/at Worldcon. Just scanned the last few entries and wanted to say thank you to diss track able for the comment pulling together all the pluses and minuses of the neurodivergent MeFi experience; and also internet hugs or best equivalent to allkindsoftime for your work timesheets story. I have been in that position, both filling in months' worth of timesheets and the tailspin when getting an email like that, and you described it so well.

* I got through those yesterday with the help of my partner. We are familiar enough with each other for him to know what I need when I tell him, "I need you to help me do that" (i.e. for him to sit next to me as I answer them, keep my attention on the task even though it wanders, and workshop replies to messages), but it's still sometimes hard to ask for that.
posted by daisyk at 3:32 AM on August 25 [1 favorite]


Also, allkindsoftime, I don't think I said it at the time, but I'm still so sorry for Soulbee's loss. She was someone special and it was apparent even over MetaFilter.
posted by daisyk at 3:38 AM on August 25


Really grateful others found my summary useful! And welcome, captain afab.

This thread will close on August 30th, which is this Friday by the site's calendar. Glad sciatrix is (as I understand it) working on the seed of a thread that is framed to foreground disabled people's voices and to discuss ableism more generally, as you suggested. Memo and other folks who are wary of participating in a thread started by an anon account should be more comfortable in the new thread. :)

This August 24th FPP on addiction and social media reminds me that one of the conditions it would be good to talk in such a thread about is addiction. I feel like I've read people saying -- including in that thread -- that their experiences of certain online community platforms rhymed with their experiences of addiction, and so it would probably be good for a future thread to foreground the experiences of people who have been addicted and/or currently deal with an addiction.

And if anyone wants to do a bit of community experimentation, like setting up a time for a Dialup call or setting up an IRL event that's particularly focused on disabled and neuroatypical MeFites, please feel free.
posted by diss track able at 9:05 PM on August 25 [2 favorites]


Also, I wanted to point out that the way cortex closed the thread in the finance update, while it was in many ways brave and honest and open and thus laudable, triggered feelings of shame in me. This is because I felt like my ordinary, polite and honest feedback in the thread might have contributed to his upset and frustration. He's in a position of power (and uses it wisely!) and that makes his emotional disclosure different than that of an ordinary member. I have moderated groups with over 40k members, and when I'm in a position of power and moderating something I am much more circumspect in my language, referring to resource exhaustion or something else neutral sounding when I'm doing something like closing a discussion. I process upset with my fellow mods, friend group, a therapist.. and yes it might feel unfair to me to keep my feelings private, but I do it to avoid triggering folks. This isn't an ideal solution for the power-holder, but I see it, when I do it, as acting in a way that is conscious of my privilege. (Side note, I've been mulling saying this for a couple of days and I'm terrified.)
posted by Mistress at 4:39 AM on August 26 [6 favorites]


The way that thread ended triggered and kind of confirmed my PTSD was correct and that it isn't safe to provide feedback even tho obv I know where it was coming from and understand it from a personal cortex way. So I won't be participating in any future attempts at changing site norms. Or even maybe disability threads in the future on the blue.

But I want you all to know that I appreciate your presence here and all your comments. having multiple mental illnesses and a physical disability I know how hard it can be to post in a thread like this and I appreciate your words and thoughts and the bravery it takes to talk about your real live life experience knowing others are reading.
posted by kanata at 5:44 AM on August 26 [7 favorites]


I, huh. I took the ending of that thread a very different way, as someone who has been in a position that feels... pretty similar to the way I read cortex feeling.

When you are in a leadership role and trying to juggle all of this, and when people come in and repeat the same things about what you are doing wrong and how you, personally, are failing them by not accepting every mutually-contradictory thing about what folks think you should do differently, there is only so much you can say. Especially when you are trying to listen and you feel completely raw, and you don't necessarily trust your own judgement (which is, after all, singular) above everything else, and so you are trying to take the temperature of a group of people to get a sense for where your own judgement conflicts with others.

Mods are humans. Not perfect. And I think that we cannot expect mods to be superhuman in their own grasp of and ability to handle their emotions. I have very specific trauma about that, too--that way that being able to control yourself in a wide variety of situations means that people feel safe to expect that you can control yourself in all of them, forever, with no ability to break yourself. If you never perform upset yourself or show that you, too, are highly invested and have human emotions in the middle of a highly emotional and personal discussion, people assume that you are not highly invested yourself and act based on that assumption.... and one of those things

This is a community. It is not a dyadic, two-person interaction, and the way that someone handles themselves in a public community sense cannot be perfectly calculated to hit the right spot for absolutely everyone at every point. That's the downside of a highly public space with many people in it, all of whom have very different sensitivity levels for many emotional currents at any given time. That includes sensitivity both to feelings of criticism and rejection of the self1 and to feelings and position of cortex himself2. It is incredibly difficult to manage this perfectly at scale, especially when the "room" contains people who are both highly sensitive to rejection and also people who are not sensitive to rejection and who miss subtler attempts to signal conflict and boundary setting. Anger, public expressions of distress, and public expressions of frustration function as attempts to set boundaries and communicate the state of a person, and this must be possible for any person who is part of a community to do.

If cortex is not to be allowed to do that--if he is to be expected to steward this community without being allowed to also be a part of it--then we need to have a very different discussion about expectations here. I have seen repeatedly in MeTas where mods being allowed to be part of communities is something that is respected and desired as part of this space, and I see a lot of conflicting expectations and feedback about that. There is no clear feedback about how mods should behave in this space, and a lot of disagreement: for example, consider the question of discussing previously-private correspondence in public, as discussed up-thread in the follow-up to diss track able's excellent explicit question about public vs. private communication.

Having been in leadership roles in communities similar to this, and having broken and requested accommodation at exactly the time that other people were demanding that I control myself better and more perfectly, I find that saying "cortex cannot express frustration and close the thread" in response to a lot of criticism is actually really scary and upsetting to me. When this happened to me, I was asked to wait for 24h while people processed what I had to say and at the end of that time ejected from the community entirely, which had not been an option I was informed was on the table until that point. It left me totally adrift and was deeply traumatizing at the time.

One of the great truths of my life is: just because I am feeling terrified and uncertain of my welcome and my social standing does not mean that other people are not reading me as perfectly in control and holding much, much greater social power. I have repeatedly watched and tried to mediate groups of people, each holding their own traumas, who find it difficult to understand that both sides of a conflict may be feeling terrified, uncertain, and unwelcome at the same time. My uncertainty and fear does not mean that the person I am in conflict with feels comfortable, certain, and assured of their social status or welcome.

And all of this is orthogonal to the question of who is right, if there is a "right" or an objective truth to be had. But it is useful information about humans to keep in mind when we are talking about community.

1how strong a signal is enough to trigger a threshold of feeling: cortex is rejecting my feedback because he is angry with me? How sensitive are you to criticism of yourself, and how much can you handle before it's overwhelming and painful?

2how strong a signal is enough to trigger you to think "cortex seems overwhelmed and upset, he probably needs support right now" vs "cortex is in a position of power and probably is in perfect emotional control and fine."
posted by sciatrix at 6:31 AM on August 26 [9 favorites]


and, ugh, this is not to say that either of you are wrong to have commented the way you did. but also, I saw that thread end and went "yeah, in the future, these updates need to not have comments, and I am concerned that cortex is overextended and needs (paradoxically) to listen less in order to not break in the future."

I'm talking a lot. It's overwhelming. I'm sorry.
posted by sciatrix at 6:34 AM on August 26 [7 favorites]


I was speaking about my own reaction to it. Sorry. I won't speak out about it again. I'm too mentally fucked up I guess to talk to people without them misunderstanding me. Sorry again. Please continue on.
posted by kanata at 7:12 AM on August 26 [1 favorite]


kanata and Mistress, I'm sorry that you felt upset by how that site update thread closed.

At the start of this post I said:

* Different people sometimes have conflicting access needs that cannot be accommodated simultaneously

and I really believe that. Just because sciatrix is speaking about her needs conflicting with yours doesn't mean that you are wrong or that you need to stop talking about your experiences or needs.

sciatrix is, if I understand correctly, worried about a consensus forming, new norms emerging, that would make her feel unsafe. But kanata and Mistress talking about your experiences and reactions -- that's not instantly creating a new consensus, it's part of the conversation so we can collectively work out how to better accommodate different people at different times in different ways.

You are part of this community and your words have value.
posted by diss track able at 7:25 AM on August 26 [5 favorites]


I was speaking about my own reaction to it. Sorry. I won't speak out about it again. I'm too mentally fucked up I guess to talk to people without them misunderstanding me. Sorry again. Please continue on.

I understand you, and if my RSD were in a worse place, I would have carried a lot of the same anxiety (heck, it seemed to be closed in a reaction to my comment, which I had considered prefacing with language about how I wasn't sure my feelings would even be welcome. Surprise! They weren't!). I can also see how digging in when you're being emotionally open here about it wouldn't help, either. sciatrix, I get where you're coming from, but I think leaning into people on this thread specifically about it probably isn't a wise choice.
posted by PhoBWanKenobi at 7:33 AM on August 26 [9 favorites]


kanata, Mistress, you're both totally fine fwiw, and very much welcome voices on the site. PhoB, same; your comment was just a timing issue, not a cause. I realize that me saying that isn't the same thing as that being felt, but just for the record as far as where I was coming from there and where my frustrations are: the patterns of behavior I've found most difficult in MeTa policy/practice discussions intersect basically 0% with the kind of stuff folks have been talking about in this thread. I didn't want to get into a one-by-one litany of specific user issues in that comment and I realize it leaves things vague in a way that could create it's own "wait, is this about me?" kind of stress for some folks and I'm sympathetic and sorry to have prompted that.

I've been basically keeping myself-as-a-person out of this thread for, I dunno, a variety of reasons, but if we're talking about mental health and navigating the emotional contours of being on the site, sciatrix's comment hits pretty well on some of the uniquely emotionally difficult experience I sometimes have working here. And it's tricky because that's partly "the job I signed up for", right? What Mistress talks about in terms of the goal of partitioning off processing to other venues, to teammate and family and friend and therapist, is what I try to do and have done, sometimes to a fault, for years. And I do think as a goal it's an appropriate way to direct much of that energy. It's generally what the mod team aims for when we're dealing with the site.

But I'm also recognizing more the last couple years especially the high cost of the paradox of professionally concealing all emotional need and vulnerability from the community and in turn receiving less sympathy and more emotional trauma because I've made myself into a seemingly unflappable sink for other people's emotional output. It's bad for me, it's really taxing my own emotional resources and affecting my own mental health and emotional stability. Which is something in turn I basically never talk about on the site because (a) that established expectation of emotionally unidirectional professionalized stoicism but also, beyond that sense of obligation, (b) a fear that lapsing into emotional vulnerability or talking about my mental state is going to lead to people being shitty about it or using it as a cudgel or etc. And it's turned into a situation that is really pretty isolating from a community that I care about and think of as my home, and an isolation that self-perpetuates because I keep deciding to not talk about it. It's a crappy, self-contained loop. I can vent some of my feelings about there elsewhere, but it doesn't fix the loop that's playing out on the site itself.

So I'm more actively processing some of this personal stuff the last few months especially, and trying to develop both a better vocabulary and model of my own emotional needs and headspace and challenges and sort out what that means about the boundaries and expectations I've set over the years and where those need to shift for this to be a healthy job for me. Because it's kinda the job I signed up, but that's also kinda a thing I just tell myself to try and get past how hard it is sometimes. Like, I can take it, and therefore I must take it, and so I do take, and that proves I can takes it, and therefore...

acidnova linked early in the comments of the (really delightful) Shitpost Sampler post on the blue the other day to a cross-stitch pattern that reads "being able to endure something does not equal an obligation to withstand it", and I feel like that applies to so much of what we talk about when we talk about how MeFi can do better as a community to support a diverse group of voices. "Can people put up with it" may work as a functional question, and may sometimes be where the point of compromise on a difficult situation has to be, but being able to look past that and ask "should people have to put up with it, though?" instead and to make changes if the answer is no seems really important. It resonates with me personally, see above, but it's also kind of at the heart of what folks have been talking about in here about what makes MeFi something they're sometimes...enduring rather than just being comfortable in. It applies to stuff folks talked about in the PoC-centric threads. It applies to a lot of other things we haven't dug in on specifically lately. As I've been working through my own shit I've been trying to look harder at the site as it exists for everyone through that same kind of lens.

That got kind of long, but, hey. Stuff's weird, stuff's hard; even in this weird extra-stressful moment in site history I'm hopeful for a MeFi that navigates all this stuff in a more helpful and collaborative and mutually-supportive way, and I know getting there isn't gonna be trivial and I want to thank you all for being here and trying. I know just talking about competing needs and emotional vulnerability is its own bit of added vulnerability. Thanks for being a good enough crowd that I'm spilling some of this shit after all finally instead of sticking to the safety of trying to be unflappable.
posted by cortex (staff) at 8:48 AM on August 26 [17 favorites]


diss track able's summary is 100% correct and I did not want to make you feel unwelcome posting, kanata. I also didn't mean to make you feel like you were too fucked up to share your feelings, I just--we're all fucked up here. Just about everyone I feel safe around is fucked up in some way. Being fucked-up is my normal.

I got you. It's okay. I value your contributions, I see your comments all over the place, and I smile when I see them. Just because I had my own fear response to the one here--and yours, Mistress--that doesn't mean that I don't value them or that they're unwelcome or that, like--it doesn't mean that they're even necessarily wrong.

*incoherent, concerned flailing*
posted by sciatrix at 9:50 AM on August 26 [7 favorites]


i had written a comment for the finance update thread and decided not to post it bc what i was writing was coming off meanly when i didnt mean it to. so but i was already feeling a little self-silenced all my life when the thread was closed and felt trauma-brain-hurt even though i had no stakes in it and can totally see how it got there in that thread specifically + history of similar conversations.

(quick side note, i just accidentally backspaced from this page but came back with my comment still in the textbox - now THAT's an accessibility feature for a scatterbrain who would've forgot what i'd written and gave up)

so much about this site is sometimes A Lot, and i still feel like not enough a part of it that it's valuable for me to keep coming here and wrestling with those feelings of enduring/putting up with. but that everyone, and particularly here cortex but also everyone, has been brave enough to be open and try to work through the problems the last few months goes a long way towards me repeatedly coming back.

this thread has been great, and i've found myself checking it throughout the month hoping people were keeping the conversation going and thinking about the things people said here in my day-to-day life and generally feeling a little more seen. thanks for facilitating it, diss track able.
posted by gaybobbie at 11:26 AM on August 26 [3 favorites]


Sciatrix-

"...when people come in and repeat the same things about what you are doing wrong and how you, personally, are failing them by not accepting every mutually-contradictory thing about what folks think you should do differently, there is only so much you can say. Especially when you are trying to listen and you feel completely raw, and you don't necessarily trust your own judgement (which is, after all, singular) above everything else, and so you are trying to take the temperature of a group of people to get a sense for where your own judgement conflicts with others."

I know this is about moderating, but it just occurred to me that this is how I feel all the time about everything
posted by captain afab at 1:44 PM on August 26 [3 favorites]


I saw that sciatrix had made a collaborative FPP drafting page and made a place for drafting the disability open thread, so I added some draft text. In boldface are four places where I think it especially needs others' input to improve.

The summary I made above includes a list of "Other people's behavior on MetaFilter that can be hard to deal with", and I hope it is useful for people who want the next thread to (continue to?) be a place where we can have a nurturing conversation. I probably won't be participating ("diss track able" is a limited-purpose alt username and I want to put it to bed when this thread closes on August 30th). So, although I know that the next thread is meant to be a place where people can complain and express anger, I hope that people who express anger can watch out for stuff like:

* dismissiveness and blameful/condemning/demeaning comments, e.g., calling people trash/garbage, disparaging large groups of people that other users are a part of
* assumptions that there are no MeFites participating in/reading discussion who have particular experiences/conditions
* comments that deny, invalidate, erase someone's lived experience
* pile-ons especially regarding minor misphrasings/omissions
* sarcasm
* demands for certain kinds of formal education or vocabulary as prerequisite for participation


if only because, as your fellow disabled MeFites have said in this thread, those kinds of behaviors -- even in comments complaining about able/neurotypical people -- can make it harder for (at least some of) your fellow disabled MeFites to listen and participate.

And, similarly, the summary I made has a list of "Parts of and experiences on MetaFilter, and choices in using it, that can be/have been great", including "people who explicitly structure their comments/posts to make them easier to engage with" -- that's a reason my draft includes a few specific questions as a springboard for discussion. Others can add more! I figure there should be some that elicit difficult/negative experiences and some that elicit positive/constructive ideas and experiences, allowing for appreciative inquiry as well as critical inquiry.

sciatrix, does this make sense/work for you? I'm trying to navigate a path here between sharing what I think would work for a followon discussion, and making space for you to structure and word stuff, to make it more likely you will be able to talk and listen as people discuss the topics important to you.
posted by diss track able at 7:23 AM on August 27 [3 favorites]


To be honest, I think a lot of the brain difference stuff has been touched on and covered in this thread, and I am quite concerned that it will crowd out the disabilities that aren't under that umbrella.

It's really quite tricky trying to leave space in ways that doesn't feel exclusionary, particularly since many people are multiply disabled (like me). This is definitely a Competing Access Needs situation, and I really super a lot don't want anyone to feel like I'm telling them their participation here on MetaFilter is in some way problematic! Just, there are fewer people in wheel chairs or using hearing aids or dealing with chronic fatigue etc than there are people dealing with anxiety. Just from a volume of people standpoint, it's easy for things to get crowded out. (As someone who has pretty life altering anxiety, I want to be sure people aren't taking me as downplaying it! That's not where this is coming from.) I think this thread could have benefited from being more narrowly focused and split into two or three, and also underlying this suggestion.

If there has been anything about abelism in regards to brain stuff that hasn't been covered in this thread, I think it deserves its own space. But I also think that these threads are Very Very emotionally taxing, and giving people a break on feeling like they have to participate and be present in a conversation of this nature is a good thing.
posted by stoneweaver at 9:22 AM on August 27 [4 favorites]


For my part, I welcome the assistance and structure. I often find myself overwhelmed and second-guessing my judgement in this space, and there is a definite temptation to retreat into silence and let things go on as they are. I'm less likely to do that, I think, than I was before you picked up that work and set it moving, diss track able.

One of the things I would like to do in a discussion of disability is introduce a few concepts that are really helpful for people trying to make inclusive spaces, and which I think would make Metafilter a better space to be aware of. Things like... conflicting accommodation, the dampening effects of accessibility gatekeeping, or the curb cut effect, or the philosophy that underlies discussions about which model of disability is most useful for any given task, or some of the philosophy under the ADA, including the notion that the duty to providing accommodations must be a function of the power held by any given person.

One thing I am concerned about is negotiating the problem with disability-as-identity, which is that people who are perfectly entitled to it are often heavily encouraged not to do so, and inviting those people to participate is often difficult to do succinctly. I think this is what diss track able is going for in that drafting, yes? But it's also difficult to work out how to do that and say "yes, yes, you" without flooding the communication channel so heavily that other people get overwhelmed and confused about what we're talking about.

(The actual reason, incidentally, that I picked out neurodiversity and d/Deafness in the original post is that both of those communities include activist traditions that involve explicitly rejecting the notion that either autism or Deafness is a disability for any reason aside from cultural inattention and exclusivity. This isn't always the other case for activist traditions that come out of other experiences of disability, and both neurodiverse and Deaf activists tend to caucus with other disability activists anyway because you're actually trying to achieve broadly similar practical goals. But those are the two traditions that are most all-in on adopting the social model of disability, and the insistence on language is partly a demand to draw attention to social models as opposed to medical models of disability.)

stoneweaver, the autism is more or less the extent of the shit I personally deal with*, although I do have friends and family who deal with sensory, physical, and pain-related disabilities. Do you think it might be better to focus a space explicitly on other forms of disability, or do you think that a more general thread focusing on disability generally without emphasis on brains would be wise?

If I was going to frame one, my instinct is to talk about what disability actually means and what models of disability are, and then to let people self-select whether or not they want to participate in such a space. I'm a little wary of doing that, though, because I have been putting a lot of myself into this thread, and I'm not sure it's having anyone's desired effect. I keep winding up in the middle of events where I'm concerned I'm causing more pain, and I'm spending a lot of energy in this discussion trying to hold space for my emotions and the emotions and sensitivities and rawnesses of others. You see some of that in my response to criticism of cortex upthread, which... went on to stifle discussion more.

Should I be the person who makes such a thread, if I am so tired and strung out that I run the risk of accidentally creating a signal that other people who are afraid to speak should be silent? If I don't do something like this, would someone else? Would that be a bad thing? I'm considering the possibility that such a thread might become another June By Queers situation, and that leaves me more than a little shaky and light-headed to contemplate. I nearly left the community over that conversation, and I still carry fear and pain about it.

(This morning I picked up a project I had been hiding from for eighteen months, because the cumulative shame of not having been able to handle it in late 2017 and dropping the ball with my collaborator had left me unable to confront it. The project is a scholarship I think would be really meaningful for the community it's aimed at, and it might or might not ever happen if I don't get my ass together and work on it.

I'm gritting my teeth and dithering and owning up to my shame and doing it anyway for that project. I trust my collaborator completely and her philosophies of activism mesh well with mine, and I want to help her out enough to face down that shame, and that project isn't community-facing anyway. Not now, anyway.)

I guess what I am saying is, I don't want to invite people to come in and express hurt and then have other people in the thread express their own pain or fear of pain back and have that inflict pain on the first group. I have a history of doing exactly that here. And the more I look back on this discussion, I wonder if I haven't contributed to doing exactly that here, again.

*This is not actually true. Strictly speaking, my near-sightedness and astigmatism are also a disability: they're just a common enough one that collectively in my culture, we don't make a huge deal out of quietly accommodating it. I keep going back and forth about whether to point that out, but in the context of disability as a marginalization, it feels like a reasonable observation to make. The rest of the shit I grapple with, the physical things like the airway that is abnormally small, that stuff isn't diagnosed... and so I'm a lot more careful about that than I might be, otherwise.
posted by sciatrix at 9:56 AM on August 27 [6 favorites]


"If I was going to frame one, my instinct is to talk about what disability actually means and what models of disability are, and then to let people self-select whether or not they want to participate in such a space."

I think that would be a good way of going about it! I actually think that might be the needle threading that needs to happen in terms of balancing Access Needs.

I think maybe structuring away from "What's your experience" and more to "Here's what abelism is, here's some models of disability, how can we stop this from playing out" might be a more focused and useful conversation. The common theme I am seeing through all this conversations is "How can we make the cultural shift so that the people the thread is ABOUT are the ones steering the conversation and not having to fight for space?"

Also, sciatrix, thank you so much for the work put in to thinking about and being open about this post and conversation. It is very much appreciated.

I think it's pretty damn near impossible to draw bright lines around anything - where does the mental/physical divide happen? How do we let people use imperfect language and not police people for not having the spoons/knowledge to be totally up to date while still making sure that people aren't using that for cover to get to be offensive? Where do we have a personal responsibility to manage our shit (anxiety, ptsd, whatever) and where does the community need to do a better job? I think these are genuinely Hard Questions that don't have clear answers.
posted by stoneweaver at 11:05 AM on August 27 [5 favorites]


as an example of what I sort of wish this space was: I'm so fucking tired of "but he might be autistic!" coming up in sexual harassment threads. I'm so angry about it. I have no patience for it, and I am really tired of dealing with the bullshit about it in every fucking discussion about sexual harassment.

At least at this point in this space, people tend to push back on it when it shows up. But god, it is everywhere.
posted by sciatrix at 12:02 PM on August 28 [9 favorites]


I totally get that. Having DID means I'm the killer in tons of books and also having to see article after article about some men using mental health as a justification why they don't have to be held accountable. I would love a space for just expressing that frustration but recognize mefi isn't prolly the best for. I'd hope any thread about disability would be welcoming to anyone who claims that title. Narrowing down to tightly can cause people to nope out. And also my only other opinion is that some of what you are talking about goes way over my head and I'm not an activist so maybe you could try making it a bit clearer. That wiki seems like I'm not welcome unless I do a lot of homework first. That's my only thoughts. Sorry if they aren't right and I know that maybe I want something different than you want.

Also sciatrix is a fabulous person and I shouldn't have been online when my body is trying to kill me as I get hella dissociated and react like a little kid. Apologies to everyone here.
posted by kanata at 12:27 PM on August 28 [5 favorites]


(I infer that sciatrix is referring to the current post on the blue, "Why are #MeToo’s latest critics shaming women?".)
posted by brainwane at 12:28 PM on August 28 [2 favorites]


ugh, thank you, I have been awful at linking things lately.
posted by sciatrix at 12:32 PM on August 28


also, kanata, you got nothing to apologize for. <3 I'm kind of intimidated by the wiki, too. It seems scary to be editing things, and I keep trying to think about adding context and worrying that it's not easy enough to follow. Also there was a helpful resource linked for making things easier to read, but it pegs disability as a word that is too difficult because it's got five syllables, which felt very.... emblematic of something, but I'm not quite sure what.
posted by sciatrix at 12:34 PM on August 28 [1 favorite]


sciatrix, glad to help.
posted by brainwane at 1:12 PM on August 28


sciatrix, I think it illustrates how it's hard to have complicated conversations, and bootstrap them, because part of what we need to do is to help people learn the vocabulary we need to have those complicated conversations. And it illustrates how cognitive accessibility is a pretty hard problem to address in structuring these discussions.

it pegs disability as a word that is too difficult because it's got five syllables

Yes, it pegs disability as a word that increases the difficulty of the text, but this isn't a pass/fail binary where you have to take out all the things it flags. :-) Increasing the reading ease, and making it so words like "disability" and "accessibility" are the hardest words in an otherwise easy-to-read text, is still a win!

By the way: If there's a better tool than the Flesch-Kincaid scale to help us measure the cognitive accessibility of an English test, I want to know about it! I did a search for a free online Flesch-Kincaid tool and found the one on Readable.com but maybe there's a better one.

Take a look at my attempt at rewriting to make things easier to read?
posted by diss track able at 1:14 PM on August 28 [2 favorites]


Apologies live in my bones along with the deep shame of generations of Canadian women that make up my DNA. :) But I'm glad we're good. And that second post diss track able makes it clearer to me of what you were going for. I'm not sure how much mefites will join in but it actually already educated me a bit. Thanks.
posted by kanata at 2:32 PM on August 28 [2 favorites]


Cousins, neighbors, colleagues:

Places to keep talking and listening:

If you need a break from talking about this, that's cool! If you want to continue this conversation after today, there are some front page posts that will be open for several more days, and I think several connect to stuff we've been talking about: I didn't look at Ask MetaFilter - there are probably also relevant discussions there.

To generally talk about the experience of being disabled, and to say "I'm frustrated" about things you see on MetaFilter: I say -- and this is not a dismissal -- if you post to your blog, and MeMail people from this thread to tell them where it is, maybe that would be a useful thing to do, to share these experiences? This is also something people seem to do on Mastodon. Also the mods are open to hearing this stuff via the contact form.

And, as I mentioned earlier, maybe someone wants to set up a time for a Dialup call, or set up an IRL event, that's particularly focused on disabled and neuroatypical MeFites.

To talk about whether there should be one or more open MetaTalk threads about disability in the future, and if so, how to frame them: this discussion page on the wiki is a good place to talk about that.

Future thread(s):

stoneweaver and sciatrix and kanata had some suggestions in the existing MetaTalk thread and so I edited the existing draft to try to reflect those a bit. If you include "d/Deafness" in the headline then I recommend you run this past someone who is d/Deaf to get feedback before posting. (Sorry if I missed it but I think none of you are?)

I had a very good experience working with the mods to frame and edit and time the MetaTalk that I put up, and flagged comments in the thread if I needed them to pay attention to a troubling comment, respond to a comment, or something like that. Whoever wants to finish up editing that draft that's on the wiki, and submitting it into the MetaTalk queue, I recommend you also use the contact form and tell the moderators if there is a particular set of days you'd be best placed to help respond to the earliest comments, which set the tone for the thread.

Best wishes & thanks.
posted by diss track able at 6:49 AM on August 30 [3 favorites]


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