7:29pm May 14, 2013

About the way autistic people put our skills into different areas.

The following was written to a mailing list about a journal article about autistic twins with seemingly different developmental paths. Ignore any part that seems to be about context, and not the main point of the message. Also I am very sorry that I used such jargony language at some points. I think reading the journal article put my language skills into that mode, and I couldn’t get them out of that mode enough to write in regular English:

In that era, they may still write someone up as having lost the diagnosis just because they learned to talk. Which is sort of normal at the age of four for autistic people. For one subgroup of autistic people, learning to talk at four is as normal as nonautistic people learning to talk at a different age.

To me what this shows is that autism is an adaptation to certain traits. As in, it’s basically a limited set of resources, and different autistic people’s brains allocate resources differently. So two people can have roughly the same original traits, but develop in directions that (at least externally, and sometimes also internally) look extremely different. Due to using resources for different skills in different ways.

It’s one reason I hate the whole idea of progress versus regression. Because what that actually means, is basically. Progress is allocating skills in a way that on the surface appears more normal. Regression is allocating skills in a way that on the surface appears less normal. Both are actually forward growth, they’re just forward growth in different directions depending on where each person allocates those limited cognitive resources.

It’s also why I hate when people say things like “I just don’t see how this adult can compare to my child.” Aside from the ridiculousness of comparing adults to children. You can’t tell based on surface characteristics, whether the inner characteristics of two autistic people are very similar or very different. Well you can tell. But not based on the kind of surface characteristics (like presence of speech or writing skills) that most people use to judge what kind of autistic people is which. Two people can be extremely similar, yet appear very different, just because some surface skill is different between them. And they can be nothing alike, yet people assume they have everything in common, just because they have some surface skill in common.

For instance there are autistic people who have the stereotypical aspie skill set but can’t speak. And people who can speak and are as far from the stereotypical aspie skill set as is possible to be. But people get grouped based on the presence or absence of speech. When speech is really just a surface characteristic that can get changed easily due to things other than basic cognitive makeup.

Also why I hate people making a big deal out of what times in my life I spoke and what times I didn’t. Honestly speech is a surface characteristic. It doesn’t have anything to do with who I am underneath. Nothing about me changed drastically. Something that was very hard just became nearly impossible (except in a few rare circumstances that can’t be repeated on command). But people treat me like there was some huge change, which changed the “type” of autism I had forever. There wasn’t. I’d be the same type of autistic person whether I could speak or not. People like me sometimes can speak, others can’t, it’s not something you can use to determine what someone has in common with me. Or what I at one point in my life have in common with myself at another point in my life.

People who judge on those things strike me as horribly superficial.

But 1979 was during a time period when autism had been changed from its original conception. Originally, most autistic people were people who could speak. Both Kanner and Asperger’s patients could mostly speak. Then at some point things shifted so that lack of speech was considered essential to being autistic. And during the seventies especially, tons of autistic children were undiagnosed as soon as they learned to talk. I’ve known several of them. They’re still autistic.

So it’s possible that even if you find the article, it will say he lost his diagnosis, because of learning speech or learning to interact with people better. But that won’t necessarily mean he actually did. Expect such subtleties to be lost on any person who has their mind set on the idea of recovery, though.

Notes: