Today’s guest post was written by Neurodivergent K, an autistic writer, speaker, and gymnastics coach, and a friend and mentor of mine. This post originally appeared on Radical Neurodivergence Speaking and has been reprinted with permission.
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. Any 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.