ABA June 30, 2021 8:31 AM   Subscribe

As someone who is autistic, I think that we need to have a conversation about ABA questions, or people seeking recommendations about ABA. I don't know if we should allow it, like we don't allow other ablest practices.
posted by PinkMoose to Etiquette/Policy at 8:31 AM (21 comments total) 8 users marked this as a favorite

A few quick points - thanks to PinkMoose for bearing with us in corresponding a bit about their post.

In this thread, it’s probably best to let the people most directly affected talk more - here, that’s autistic Mefites. If you’re not in that category, be conscious of your footprint in the discussion.

Also, from experience, this thread will probably go better if we can avoid analogies and other tangents that tend to bring in a lot of heat and divert the thread. Please keep the focus on how AskMe should handle this specific situation: AskMe questions about ABA.
posted by LobsterMitten (staff) at 8:32 AM on June 30, 2021 [10 favorites]

Is the subject Applied Behavior Analysis, or a different ABA?
posted by zamboni at 8:35 AM on June 30, 2021 [5 favorites]

Yes; for context, there was an AskMe about ABA recently that I think prompted this.
posted by LobsterMitten (staff) at 8:37 AM on June 30, 2021 [2 favorites]

If the question had been deleted then the asker wouldn't have gotten to benefit from the advice of the folks here and might have looked elsewhere instead.
posted by bleep at 11:30 AM on June 30, 2021 [25 favorites]

I'm of a few different minds of this.

On the one hand I agree with bleep that it gave the asker valuable information about the harms of ABA, and they might not have gotten that elsewhere. That said, if we had a good resource on this, that could be included in the deletion reason.

On the other hand it is my instinct that any questions asking for recommendations on conversion therapy would be deleted, yes? This is not an analogy--conversion therapy was born from the Lovaas's original methods used to "make autistic children into people." I think that if we were to disallow those questions, we should also disallow these ones.

I also want people to consider the harm this causes to autistic MeFites. Beyond being triggering, it places us in a place where if we don't clearly and effectively communicate the harms of ABA, then a child is going to be put in danger. I know it's not my fault if a parent chooses to put their child in ABA, but there is a very strong pull to try and convince them because the two hours of my time it takes to write up a concise but informational reply could be the difference that prevents a child from experiencing years of abuse. That's a really hard place to be in. And it's made even harder when parents who have used ABA come in and say, "Well, my ABA provider was nice and just taught them skills." And then I have to also explain why "nice" ABA is still harmful and detail all the ways autistic needs are routinely being disrespected and it's exhausting and it ruins my day.

So I don't know. I do think there's value in a poster getting a bunch of autistic adults saying, "No, this is bad." But also, that's exhausting for autistic adults. And when parents come in and say, "Actually, not all ABA is bad" it gets even more exhausting and triggering. And I just feel like this isn't something we expect of other marginalized groups to tolerate on Metafilter for the sake of educating people about how bad [insert harmful thing here] is. But I'm trying not to stray too much into analogy territory here.
posted by brook horse at 12:01 PM on June 30, 2021 [28 favorites]

Perhaps some sort of groupsourced informative google docs we can just link people who have that question to? Yes, it is labor, but it's labor we only have to do once. Furthermore, people tend to find pamphlets convincing, I think - the whole "why would people go to all this effort if they didn't think it was true" thing.
posted by a power-tie-wearing she-capitalist at 12:34 PM on June 30, 2021 [2 favorites]

brook horse: ...[the AskMe post] gave the asker valuable information about the harms of ABA, and they might not have gotten that elsewhere.

If I may build on this: when a Mod deletes a question about ABA, could they at the same time provide some useful background links/information explaining why they are deleting it, and what's wrong with ABA?

That way the asker gets a useful correction, and the site doesn't have posts about a topic that's considered harmful.

(Sorry if that also makes the Mods into neurodiversity FAQ-dispensers.)
posted by wenestvedt at 1:34 PM on June 30, 2021 [1 favorite]

I do think there's value in a poster getting a bunch of autistic adults saying, "No, this is bad." But also, that's exhausting for autistic adults. And when parents come in and say, "Actually, not all ABA is bad" it gets even more exhausting and triggering.

Respectfully, while I acknowledge and appreciate that is your opinion, there is a large population of individuals who have directly experienced ABA treatments who would not say that it is bad, or was abusive.

Any discussion on this topic has to come with an acknowledgement that our community is not representative of the population at large. There are huge numbers of autistic adults (and children) who can't operate a computer, or engage with a community like ours, and who are not contributing to the current discussion about treatment methods.

Any discussion of this topic also has to acknowledge that ABA is not a single thing, but a broad approach to treatment. It is an umbrella that can cover things that are bad and things that are good. As a result, saying "ABA is bad" is as illogical as saying "ABA is good."

The most vocal critics of specific ABA-related practices tend to be individuals like those in our community, who have had a personal, negative experience, that is often related to trying to make them act like someone they are not. But many of the people who are coming to AskMe for guidance are quite possibly doing it on behalf of loved ones whose future ABA treatment won't be "I'm going to force you to make eye contact when speaking with someone," but "I'm going to teach you to use the toilet on your own" or "I'm going to teach you to feed yourself."

We should not shut down discussions and questions about ABA. We should create a forum - as we have now - where those who have differing opinions about specific treatments can share those views with someone who facing a decision about treatment or medical care.
posted by NotMyselfRightNow at 6:13 PM on June 30, 2021 [17 favorites]

I am actually not coming at this from a negative personal experience. My experience with ABA is entirely professional and my criticisms go far beyond just the ethical ramifications (please look into the monopoly ABA has on insurance and the training requirements to become an ABA line therapist). But please understand that I work closely with ABA researchers and providers and I am up to date on the most cutting edge implementations of ABA . They are all still bad.

The fundamental of ABA is using rewards and/or punishment to reinforce behavior. No matter how you implement it, this is the underlying principle. If it is not you are not doing ABA. Every method implements the ABCs--antecedent-behavior-consequence. Targeting the behavior rather than the antecedent is fundamentally about changing the autistic child. It is not saying, "Let me make this easier and less distressing for you." It is saying, "This is something that is hard and distressing for you, and I am going to use rewards/punishment to change your reaction to this hard and distressing thing."

I provide therapy for autistic children, including ones who do not speak, cannot feed themselves, and do not use the toilet. There are many, many ways to address these difficulties without resorting to rewards/punishment. Using rewards to encourage autistic children to do things that are difficult and distressing for them is harmful. Teaching autistic children that they must put themselves in stressful, overwhelming situations or they don't get nice things is harmful. And yes, feeding yourself or using the toilet is a stressful and overwhelming situation. As an autistic adult I routinely struggle to feed myself because the motor planning required is so overwhelming. Forcing myself to eat things that require complex motor dexterity only led to increased anxiety and stress. The solution was to modify my eating habits so that my meals don't require as much dexterity. Therapy for autistic children should be about figuring out what works with their brains rather than against them, not using rewards/punishment to modify behaviors that are the result of a brain that needs something different from the world.

I may not know what these children are thinking but I have a much closer experience than most people do, and I still firmly believe that ABA is harmful, and this is the conclusion most of the other (non-autistic) autism professionals in my workplace and academic circles are coming to as well.
posted by brook horse at 8:04 PM on June 30, 2021 [40 favorites]

There is nothing good about ABA. The idea that there are autistic people who can self advocate and those who cannot, denies the autonomy of the autistic subject, and splits a community who has not had a history of autonomy in two. They do not talk about treatment methods, because they are not allowed to talk at all.

t dismisses those who are non verbal, for example. I know we are supposed to avoid comparisons, but considering the history of ABA, and people like Lovaas, it is exactly concordant with gay and trans conversion therapy. We do not argue about efficacy, or talk about all of the things that conversion therapy might mean, we just say this does damage to autistic kids, and we put it away.

We need to do the same with ABA.,
posted by PinkMoose at 10:22 PM on June 30, 2021 [9 favorites]

Given the guideline of In this thread, it’s probably best to let the people most directly affected talk more - here, that’s autistic Mefites. If you’re not in that category, be conscious of your footprint in the discussion
I think it would be both helpful and fair to ask that any allistic (non-autistic) pro-ABA or ABA-neutral commenters here disclose that they are not coming from lived experience as autistic people/potential targets of ABA.
posted by needs more cowbell at 4:12 AM on July 1, 2021 [7 favorites]

That question was upsetting to see and I considered flagging it for possible removal before I decided to try answering it instead, since the poster did (and still does) seem to be well-intentioned and in a place to be successfully steered away toward other options. So, good outcome there, but was it worth the potential pain to autistic MeFites seeing and answering that question? Eh. I don't know how to do that math. But my gut says no.

A deletion with a link to some writing on why many autistic people experience ABA as harmful would have accomplished as much with less harm. I'd be thrilled if that were our stance going forward. Askers who are hellbent on finding someone to tell them the good things about ABA will not have a hard time finding other places for that. This community doesn't have to be the place they go for that particular thing.
posted by Stacey at 4:37 AM on July 1, 2021 [3 favorites]

Hey, NotMyselfRightNow, could you be clear about your links to ABA?

I'm autistic and I regard it as intrinsically abusive. And I regard your insinuation that you know more about autistic people with high support needs than I do as deeply suspect.
posted by ambrosen at 5:29 AM on July 1, 2021 [8 favorites]

I'm autistic and I would support a mod pointing posters to documentation about why ABA is harmful, rather than deleting such posts. There are a lot of documents available in the autistic community. I don't have specific links right not but I would suggest that at least some of these links should be from people of color, people with marginalized genders, and nonspeaking autistics (yes, many of them do write).
posted by matildaben at 3:07 PM on July 1, 2021 [5 favorites]

(Not autistic) I see that I just had a comment deleted on a different Ask when I questioned whether the thing that the asker was requesting suggestions for was a good thing to do in the first place. Is there a general mod policy around which Ask questions are accepted and when critique that the basis of a posted question may be harmful is accepted versus when such comments are deleted? I.e., how is the issue in this thread situated within overall mod policy?
posted by eviemath at 8:25 AM on July 2, 2021 [2 favorites]

Given that ABA touts itself as the only “evidence-based” treatment, at the very least Ask deletions perhaps should note that such evidence is incomplete and inconsistent and the literature rife with undisclosed conflicts of interest.
posted by bixfrankonis at 8:59 AM on July 2, 2021 [8 favorites]

I'm strongly NOT in favor of anyone trying to make me behave 'normally'.

I'm also strongly NOT in favor of eliminating questions that make me uncomfortable when there is a real need to make the problems with those questions EASY TO FIND, especially when younger or more naieve people very naturally want to know about them. Having a very simple-appearing but wrong question appear WITH thoughtful answers, and arguments against its basis, is one of the few saving graces possible with the information wild west we have going on.

I'm super tired of saying the same things over and over again, and I get emotionally jolted when certain topics come up, and that's hard to manage. It's not on me to answer those questions over and over again when they come up from a new 'generation', sure, but it does upset me to think that the premises underlying those questions might go unchallenged, so in a way, when these things come up, it _is_ on me. Sometimes I do want to live in a world where upsetting, naieve questions -- which might be disingenuous or might now -- just don't intrude on my world.

But would it really be better to have the very question, that little opening presented by someone who doesn't understand but isn't yet totally closed to new perspectives, removed or disallowed? People -- maybe not all kinds of people, but the kinds who are at all open to dialogue -- are still going to ask them. And when they ask them, I want them to find a better answer than they will find if the top hit on Google is (as seems likely) some organization _selling_ the thing that upsets me.
posted by amtho at 9:21 AM on July 2, 2021 [12 favorites]

Autistic person here. I read that question and agonized over it. In the end I didn't write anything because I was afraid that anything I wrote would have been viciously snarky and get deleted as such. (I was thinking about suggesting that the OP could hire an ABA therapist for herself to train her to suppress all outward signs of her audio sensitivity; I mean, refusing to go on a family trip is very challenging behaviour, isn't it just.)

I also didn't appreciate the parent who showed up to slam their autistic child and describe how much said child deserved their ABA.
posted by heatherlogan at 3:10 PM on July 3, 2021 [6 favorites]

And so as not to abuse the edit window: I was not subjected to ABA as a child because I am female and females didn't get diagnosed in the '80s. I got plenty of societal conditioning though, and am just now starting to work on unwinding the lifelong cumulative trauma.
posted by heatherlogan at 3:13 PM on July 3, 2021 [5 favorites]

And I just feel like this isn't something we expect of other marginalized groups to tolerate on Metafilter for the sake of educating people about how bad [insert harmful thing here] is. But I'm trying not to stray too much into analogy territory here.

I am not autistic. I am Disabled and neurodivergent.

I agree that analogies between the experiences of marginalised groups are very risky. I think you're right to raise this though, because it feels like there's a qualitative distinction to be made about how expectations arise. Much of the ableism I see on Metafilter seems to emerge from a category error, with Metafilter not yet consistently recognising autistic people (and generally other D/disabled people) as a marginalised group: as a group whose experience of living in society is unavoidably and pervasively constructed by marginalisation. I'm not sure how analogy can be avoided when assumptions underpinning discussion are of a fundamental heterogeneity between the marginalisation of autistic people and marginalisation generally. It feels like it emerges to oppose a process of exclusion by analogy (I guess you'd call it "catalogy") where unexamined ableism leads to assumptions that the relevance of privilege and marginalisation to discussions about and involving autistic people is absent in a way that it is not in relation to other marginalised people.
posted by howfar at 2:39 AM on July 4, 2021 [5 favorites]

I am not autistic, nor do I have enough knowledge about modern thinking about it, as the textbooks I read were old enough that only profound autism was discussed, and was framed in such a way as to suggest that persons of XX chromosome couldn't be autistic.

Because my educational background is philosophy with a focus on bioethics, when I researched ABA and read "operant conditioning", I chose to not put my kid in a Skinner box, but how many people have that sort of base knowledge?

My point is, ABA practitioners are recommended by search engines, insurance provider directories, and professional referral. Some "ABA" practitioners, are in fact NOT using ABA, which makes it so much more difficult and confusing.

People have questions about it, because most people don't grok what it is, or why it is ethically problematic. I also understand that discussions about ABA are triggering for some individuals, and I don't know how we solve for that. But AskMe is a resource used by an audience much larger than the Mefi family.

Are we creating the greater good by being an information resource for every person who has the question, or by creating a resource page with links and information that can be included if the question is closed, but not deleted, or by banning the topic entirely?
posted by SecretAgentSockpuppet at 8:58 AM on July 28, 2021

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