1:14am December 13, 2011

➸ Otherkin, Intolerance, Changelings and University: Is "moving through the autism spectrum" a valid concept or one more form of ableist brainwashing?

So I’m reading the book Asperger’s Syndrome, Adolescence, and Identity by Harvey Molloy and Latika Vasil for my thesis, and they keep talking about this idea about people ‘moving up through the the autism spectrum’ and becoming less and less affected by aspie symptoms and several of the…

The answer box wasn’t long enough so I am replying here.

One thing that pisses me off about it, in addition to everything you just said, is because it makes it seem as if people like me don’t exist.

I don’t see these things in terms of becoming more autistic or less autistic. But people like that would see me as having become more autistic over time, rather than less. And it seems like a lot of people are bound and determined to say that this never happens.

And that disturbs me because plenty of autistic people find themselves losing certain abilities with age. With some people, like me, it started happening when I was still a kid. With some people it’s not till their 20s, 30s, 40s, 50s, or even later. (It’s still common enough that I felt the need to write Help! I seem to be getting more autistic! just to keep from having to answer their questions over and over again every time someone asked me.)

But when that happens, they usually need a crapload of assistance, and they’re not going to get that assistance if everyone thinks that autistic people just naturally become “more normal” over time. I know people right now who are right on the edge of that crash in various stages of adulthood, and they aren’t going to have the benefit of developmental disability services because most of them weren’t diagnosed as kids, and lots of DD services won’t touch you if you don’t have a pre-age-18 diagnosis. They’re likely to get shunted into the psychiatric system and that is not likely to help even one of them when what they need is actual assistance functioning in daily life.

Additionally, of course, it just doesn’t allow for the complexity that autistic people’s growth involves. Most people see me as having simply lost skills over time and that’s all there is to it. They don’t see that it was actually a complex tradeoff process, some skills lost for other skills gained. The very few medical journal articles on what happened to me don’t make any note of this either, even though it’s a common theme in our actual stories. Because if I’ve lost the ability to speak along with a huge bunch of motor and cognitive skills then what could I possibly have gained?

Well… honestly one of my guesses as to what happened to me. Is that I was trying very hard to function in a way that my brain was not meant to function. And that one day my brain just rebelled and said “I can’t take this anymore, you’re going to function within my parameters. That includes having skills that are right for you. If I have to chop off all kinds of abilities in order to make room for the skills I want you to have, then I’m going to do it. No, I don’t care – I DON’T CARE what you think, or want, or think you want – I can’t function the way you want – I’m just doing this. Now. Deal with it.”

But that wouldn’t make a very good medicalized story, so nobody tells that one.

ETA: I remember a few outcome studies that said that between 1/3 and 1/6 of autistic people “regress” during adolescence. I obviously don’t believe that’s the full story of what happened. But it’s totally not rare, and nobody is saying anything about this.

Also, it’s leaving answers enabled just as they were on the original post, but I’m not asking a question, so if the ask-box confuses you, that’s what’s going on.

OH AND THE OTHER THING (sorry for all these after-the-fact edits): I still get kind of pissed when people assume I should hate what happened to me – or even assume something’s wrong with me or that I’m lying if I say that I’m fine with it. Because the entire thing is framed in terms of loss, and that’s not how I experience it except when I have to use words in very shorthand sorts of ways.

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