This is in theory the first post of a series that will explore "optimal outcome" of autistic folks subjected to behavioral interventions. Much of the language around the subject revolves around children, and a lot of what I am saying will be about children as well. When I say children, I do in fact mean young people. If I talk about Autistics, that's all of us. 'Children' refers to young folks, in this case often preschool and elementary aged.
The stated goal/implied promise of many behavioral programs "for autism", based on UCLA's Young Autism program of the 80s, is "indistinguishabilitly from peers". What this implies, though cannot say flat out, is that the subject of the interventions will be NT. Well, not really be NT. But they will look NT.
Except, not really. No promises are made as to neurotypicality if one looks at the definitions used to make these claims. The definition used in the Young Autism Project? Placement in a typical kindergarten class and being promoted yearly. More recent literature has used the definition of being placed in regular education and having at least one non disabled friend. How many Autistic folks do you know who meet this definition? And yet how many of us are so not like our peers in most other ways?
Being declared indistinguishable from peers does not do any favors to the child, except maybe ending the hours and hours of discrete trial training. Being academically "on track" does not magically confer socialization or executive function abilities. It does not mean that someone is not recognizable, sometimes immediately, as Autistic according to DSM criteria. All it means is that the student does book learnin' at the same level as people born in the same year. No more, no less.
This misunderstanding (all the weasel words!) does Autistic students--and their families--a huge disservice. The term implies that students should need no services, that they're normal now. But life is not just school, and school is not just books and tests. Discrete trial training does not and cannot measure things like executive function or ability to cope and thrive in the unstructured environment of the playground or sensory regulation. Yet these kids are indistinguishable from peers! They're normal! No services!
Another issue is the behavioral and choice perspective this all takes. You're declared indistinguishable from peers, so if you are struggling it's your own fault. You've been officially declared indistinguishable, so something you are choosing to do is enticing the bullies. You're too academically capable to need help with anything else. Amy and all traits of autissm are due to moral failures and choosing to act different once you've been declared indistinguishable. Lovaas said you have no right to act bizarrely (this is one of the things that stuck with me from my reading of "the ME book"), so when you choose to do so, you choose the negative consequences. Any 'distinguishability' and the way people react to it, is a function of your own faults.
This also essentially punishes Autistics for learning coping skills. They might get you through the lower grades, maybe even into high school or young adulthood if circumstances line up, but there will come a time when scripts and constant vigilance are not enough. There is always too much to process, too much to juggle, more and more things to do and ever increasing demands. Putting a veneer of "indistinguishability" on top of that is just setting us up for burnout. And then we are punished further if we can scrape together one last skill to seek help for burnout, help that doesn't even exist. Failed indistinguishability should just fade away.
I plan to touch on these topics and some other issues over the next while. Indistinguishable does not mean what people are led to believe it means, and this is something that needs more exploration.
9 comments:
Thank you for this! Indistinguishable from peers was the goal of my life--constantly hiding the things that were 'wrong' with me. But boy, was I good at making grades! I was very lucky to survive the resulting burnout, and graced with some excellent help (eventually).
Yes.
I had this burnout after leaving the lightly structured world of high school and trying to keep-up academically, all the while struggling and not knowing how to get help. I knew I was different but didn't have the language or energy to express it then and only was able to learn it decades later, no thanks to any parent, counselor, therapist or psyc person. They were focusing on my academic progress, such as it was pre-college. I had some good math skills and that made it more confusing I guess to them. I also thought I was 'not trying hard enough' or some bunk because I didn't know about my executive functioning issue and mood problems. Not that I had any social life to speak of and they didn't notice my lack of social growth or friendlessness and loneliness. It sux.
Thank you. You and the other blogs you link on your mainpage have become my new pantheon of personal heroes with their honesty, activism, and beautiful humanity. This "pressure to pass" issue in particullar is so important.
Sometimes I think that I had less problems with interpersonal interaction when I was more distinguishable from other people on a purely visual level. You know... hair down to my ass, weird T-shirts, trousers tied with an audio cable, etc.
So anytime people found my behaviour weird, they could "write it off" as being a "cultural" thing. "Us metalheads", "us pot smokers", "us geeks", whatever. So anyone who would find my behaviour disturbing would already be put off by my appearance anyway.
Whereas when I was tired of presenting such subcultural shit and decided to just "be myself", there were no more "excuses" anyone could "blame" my "weirdness" on. In other words, "Uncanny Valley".
And of course, as long as you are a "Child", many, many, things are forgiven just because people believe you will "Grow Out Of It", even if some children never exhibited certain "disturbing" traits even when they were fully entitled to do so.
I feel so ridiculously lucky that I escaped sort of training. When I was a child, rules I could not understand pushed my anger buttons like whoa. So I feel reasonably justified in thinking that if my mom had bought into the indistinguishability paradigm, and if I had been subjected to discrete-trial ABA (which would've involved more things guaranteed to make child me a whirlwind of rage: wasting my time on stupid stuff and disregarding whatever I had to say), that I would've been aggressive and violent. I know I had the potential to be, and I largely credit my (apparently unusual!) experience of being treated like a human by the adults in my life with enabling me to avoid that fate.
Very interesting insight. Will follow this.I am currently conflicted about different approaches I and the school take about my son. He had made great progress, but now the social rules are changing again, kids are getting a taste for bullying - and he is told to cope MORE and better, not to get upset not to give them more reason?
I want him to be comfortable in his difference, They should adapt and cope with it, too.
Yep. I finally quit seeing a therapist recently (and may not go back--it's been twenty years of therapy fail) because all the therapy we did was about making me 'normal' and reminding me how 'difficult' I am.
After I stopped going, I was about 100% less depressed. Therapy that does nothing but try to push us harder to be 'normal' is damaging, NOT helpful.
Oh my yes! Very much the story of my life and the end result. When I "came out" to my friend Gillian her words rattled me. I said "Oh and it turns out I'm autistic on top of everything else."
Gillian had known me for a number of years by then and said "Oh course you are dear" then paused, silent fir a few moments and in a quiet voice followed with "Wait, you mean you didn't know?"
So yeah. holy hannah, this, yes!
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