Yes, and that’s EXACTLY why separating out ‘Aspies’ was stopped. Now they’re trying to separate off the other end of that same spectrum instead. We’ve already determined that it’s not the right approach, so why try to go back to the old way?
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Just went back and read my post. I cannot type for shit before coffee!
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Gatekeeping.
This way, the parents of (some) autists get to be the One True Voice for all autists.
Of course this is a #notallautismparents thing, but there are a non-trivial number of parents who are, apparently, openly angry that autists who speak are listened to. Not “instead of them”, because it’s not. Not even “as well as them”. At all.
These are the ones who head Senate Inquiries into Autism, and attack witnesses for daring to hold their own opinion (original article is firewalled, but link is to an extract of the relevant bit, and the Hansard is available.)
These are the ones who complain about how verbal autists are stealing all the oxygen by insisting on having opinions when clearly only ABA practitioners and the parents of non-verbal (or: “real”) autists should be allowed to run these conversations. (Pay no attention to the fact that this the woman who spoke in front of her child about driving them off a bridge, knowing that it was being recorded for a propaganda video.)
These are the ones whose idea of autism advocacy is an exclusive thing: they are actively angry with people even asking them to consider that they might be wrong.
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Is ABA the only therapy that mainstream practitioners of all stripes (testing and therapeutic psychologists, pediatricians, teachers) know about? Every consult or informal discussion so far leads to ABA. There’s a lot of what appears to me to be good information about how punitive ABA can be, and I find it troubling how it approaches the recipient as broken. But there are issues/responses that need help.
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This is a big subject, and there are a few questions in this that need answering.
To a first approximation, yes. This is because it (in the form of the ABA associations) is really good at marketing itself to desperate parents and bewildered doctors as the last best and only hope for those poor doomed children. And the association, and its halo of “researchers”, and the parents who think it helped, and the doctors who read all the papers, all combine with the lobbyists who schmooze with the politicians (especially the politicians who are also worried autism parents) to get it codified into health plans and state/federal laws and guidelines as the one and only authorised “evidence based” (remember that term) treatment program.
“Evidence based” is a dog whistle, and a term of art, and a baton with which to rhetorically beat any naysayers. To the people who support ABA, it is “evidence based” on two levels:
- generally by lots and lots of research papers and journals and studies, and
- specifically by its ethos that the individual experience is on gathering data and applying techniques “proven” in step 1 to change “challenging behaviour”, and testing whether that’s worked or not.
The trouble is that both these aspects are bullshit.
The research is, when you go look it up, and then chase down the authors, then chase down their associations and affiliations, and follow the map of red threads, then what you tend to find is that they are all, directly or indirectly, working in the field of ABA therapy, their citations are all ultimately to each other, and their experimental theses are along the lines of “which is more effective: ABA, or waving this paper fan?”. The experiments are “evidence based” in that they don’t compare therapies, placebo, or even against null: they are case studies which say “we set out to test whether a 40hr/week intensive one-on-one therapy training with rewards and punishments had measurable effects in desired behavioural changes”, and the answer is of course it fucking did!
When the question is “did it help?”, the answer seems to be “Not really.”
The real question comes down to why.
First: what is ABA? The short answer is: applied Skinner Behaviouralism. As in, ABA was developed by Ole Ivar Lovaas, who was a personal student of B.F. Skinner. And Skinner’s Behaviouralism explicitly only cares about behaviour. Why one performs an act is irrelevant, only that the act occurs. (I think the idea is that if you can’t get a ruler and measure someone’s internal state, there’s no point caring about it. So according to Lovaas’ strictures and method, once a behaviour has been targeted for “extinction” or encouragement, all that matters is that the behaviour happens or not.
That’s not even the worst of it. Lovaas said in an interview once that he didn’t see autistic children as “people”, just as “person shaped”, and that it was his job to build a person from these raw materials. In an interview entitled “After you hit a child, you can’t just get up and leave him; you are hooked to that kid”. (No, seriously, read the interview: it’s worse than you think.)
This is the theoretical core and underpinning of all ABA.
So it doesn’t matter if a stim is calming, or is being used to stifle overwhelming stress: the stim is determined by the therapist to be pathological, and must be “extincted”. If suppressing the stim results in other stims, or other coping mechanisms, then they also will be extincted. The goal is normality, as defined by and measured by the therapist.
What the autistic child learns from this is People in Authority will punish you for things you don’t understand and demand that you thank them for it. Indeed, they will train you to thank them for it. They will not explain what they want, they certainly will not explain why they want it, they will just punish you until you do what they want, whether you know what you’re doing or not. Comprehension is not required, only compliance. They don’t care how much stress or pain or anxiety or fear you’re in. They not only don’t care, they will punish you if you allow them to find out. Suppress all your fear and pain and never let anyone see. They will train you, over hours and days and weeks and years that you don’t get to decide how you react to things or deal with things. Saying “no” is not an option. Saying “no” is wilfulness and will be punished.
Think about that: part of the point of ABA is that vulnerable autistic children are trained not to say “no”.
The proportion of people who’ve undergone ABA who then have PTSD is higher than the proportion of Vietnam veterans with PTSD.
Now, I’ve had interactions with self-described ABA practitioners, who, when I describe all this, are horrified, who would never do that sort of thing. Even when I point out what Lovaas’ standards were.
The upshot is that these people, who largely are not monsters, and really do think they’re doing the best for these children, think they’re applying ABA but, in sometimes really important ways, aren’t.
So much for “Evidence Based”. And the closer it is to Lovaas’ standard, the more monstrous it is. The Judge Rotenberg Clinic is applying strict ABA principles by strapping tasers to children. And the ABA guiding body, ABAI (Applied Behavioral Analytics International) has voted to oppose the process of strapping tasers to children… a couple of days ago.
Most autistic people are somewhere between “not supporting ABA”, and “think ABA is a crime against humanity”. Autism Speaks loves ABA, because it ties in with their general attitude that autists aren’t people and their opinions don’t matter, only the feelings of their parents.
I can’t support ABA; not because I’ve undergone it, but because I believe the words of the people who have. Those who claim to be providing ABA “but not like that”, almost by definition aren’t providing ABA. Which is fine, because it probably wouldn’t have done much useful either way.
The real, and only pertinent question is what those issues are, who has them, and whether there’s some way of addressing them, and I can’t give a better answer on that without knowing what they are. (And, given that I’m not a therapist of any description, I probably couldn’t help even then.)
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The important thing to remember about ABA is that there is nothing in it that is meant to help the autistic individual. It is meant solely to make said individuals less distressing to caregivers. It does this successfully, but my question has always been “does that really matter?” I had never seen that “person shaped object” quote, but it fits perfectly with what i see. And, just having to take my recertification exam in peds, i was dismayed to find that in said exam, the question “what is the first step in treating a newly diagnosed autist” was answered “ABA therapy.” I filed a protest on this, but it is a common opinion, especially in the case of non-verbal autistic kids, because it can make the parents/ caregivers more comfortable. I am also not a fan. I would caution about dismissing “evidence based medicine,” though. That’s hiw we get vaccine deniers and covid quacks. Rather, looking how that evidence was generated and, even moreso, what that evidence actually says. Because making caregivers more comfortable should never be the overarching goal of any therapy. It would be like treating childhood cancer with the goal of keeping kids from crying, instead of improving their lives. That’s pretty much ABA.
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I think it’s more about whether you’re talking about with or without the scare quotes. Evidence based medicine is what we should all be aiming for. (As Tim Minchin said: “You know what they call alternative medicine that’s been proved to work? Medicine.”) But when they (for whatever value of “them”) say “evidence based therapy” in the context of autism, they mean ABA, for which, as I’ve tried to point out above, the “evidence” is an intersection of a mirage, a truism, and a lie. (That is, the studies done by the proponents tend to have varying levels of bad design or not actually be testing what they say they are, when people who aren’t invested in ABA do studies or meta-analyses, it turns out that the benefits can’t actually be detected — although the harm certainly can be — and the studies are typically asking the wrong questions in the first place.)
As far as the experience of ABA and its ilk goes, there’s a poem for that. (Which I’ve posted here before, but bears repeating.)
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Also a very thought-provoking story in general.
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That really spoke to me. On many levels.
I’m not sure I can articulate all of them right now.
Teaching that to a child is just not right.
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Thanks for that.
You’d think by now “Skinner” would be in the same category as “Freud” - historically interesting, irrelevant to current practice.
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Not just irrelevant, but often damaging and wrong.
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Grrrrr.
I was reading something that included the factoid that the first person diagnosed with autism is still alive, so I looked it up.
First the good news: it does reference Kanner (as the doctor who diagnosed this supposed first autist) rather than Asperger, so yay for that. Anything that pushes Asperger out of the limelight is great.
But it completely ignores the fact that the first person to diagnose autism, in 1924 (nine years earlier than this boy was even born, and about 14 years before he was diagnosed) – and write about it in an international neurology journal based in Germany, which means both Kanner and Asperger would have read it – was a Russian Jewish woman named Grunya Efimovna Sukhareva.
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Just seeing the beginnings of a shift away from forcing autistic people together “look more normal” so they are not making NT folks uncomfortable to actually trying to make their lives easier and happier is earthshaking, and not without some controversy. It require not only changing how we think about caring for autism, but changing how we ourselves (NTs) view “acceptable deviation from the mean.” I hope that movements to validate a much broader idea of “normal” in gender and sexual identity among other human characteristics will influence this field as well. There is no human characteristic that does not exist on a spectrum, and the idea that green is better than red or violet due to where on the spectrum it is found is just as dumb.
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Learning about neurodiversity has been validating to understand why I find certain aspects of my daily life difficult.
Yet I also feel like a fraud.
I’ve had to convince — even prove to — friends and family that certain behaviours are connected to my neurodivergence. They like to play devil’s advocate because “not everything is linked to your diagnosis”.
A friend once accused me of “co-opting disability for my convenience”.
These narratives feed shame and guilt. I find myself overcommitting to things — trying to meet my “full potential” and fight against being labelled “flaky” or “lazy”.
But it’s a disastrous cycle. Navigating ableist spaces and comments leaves me feeling drained. I have to be on guard. Without a space to recharge, my over-commitments become unrealistic and, as a result, I end up confirming the negative narratives that people misattribute to my personality.
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DO YOUR EYE CONTACT LIKE I DO DAMN IT /s
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