6:02am February 7, 2012

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And here we get into the “high-functioning”/“low-functioning” issue, which is also about who has the right to define what autistic lives are like and what people with autism and autistic people want. Rubin doesn’t say in the documentary, but does say elsewhere, that

The rift in the autism community [between those people who do not see themselves as in need of a “cure” and those who do] basically is between what we label high-functioning and low-functioning people. High-functioning people speak and low-functioning people don’t. The people with Asperger’s [S]yndrome, also a type of autism, love to talk; however, their very narrow areas of interest give them away. These people are the ones who are offended by the idea of a cure. They could pass for normal…. I believe the idea that they should be cured is wrong. They are different, but basically are just a variation of the norm and should be accepted as such. Some even have exceptional abilities that should be celebrated and encouraged.

As a low-functioning autistic person who is still really awash in autism, I actually am aligned with the cure group, although I will not personally benefit if a cure is found. Low-functioning people are just trying to get through the day without hurting, tapping, flailing, biting, screaming, etc. The thought of a gold pot of a potion with a cure really would be wonderful.

If you use Rubin’s definition, I’m low-functioning: I don’t speak. Like Rubin, I use augmentative communication. Like her, I engage in self-injurious behavior (SIB). She started with facilitated communication and progressed to independent typing; I’ve never used a facilitator. (Not that that stops some people from assuming that all autistic typists are using FC – check out all the comments at Amazon for some examples – and that therefore someone else is controlling everything I type.)

If anyone knows where I can get an old wooden Ouija board to use as a letterboard, as a private joke, I’d love to hear about it.

Like Rubin, I have at times had some official, and powerful, and very pessimistic prognoses – although mine, unlike hers, came only after I had achieved enough that people were willing to overlook what the professionals say. That bought me a lot of chances that many autistic people never get. On the other hand, her IQ test score is much higher than mine, and in a society that assumes that there is such a thing as g (general intelligence) which everybody possesses in some degree and that determines where we belong in life, and that you can measure g with an IQ test, that’s significant too. So, using some criteria, she’s high-functioning and I’m not … or at least borderline not.

I managed language a lot younger, and my speech, at its peak, was very good. In my earliest memory I am upset about something my parents told me; I missed a whole lot of what was said in my presence or even to me and I still do, but I got some of it, and I’ve been a pretty decent reader since I was young. Rubin did not have a way to communicate until she was 13. So maybe I’m high-functioning and she’s not. Or maybe, since she can at least voice words (more than that, she uses some spoken words and phrases communicatively) and I no longer can, she’s lower-functioning than I was and higher-functioning than I am. Or maybe, since I type faster, I’m higher-functioning.

Rubin can clearly tolerate a lot more social interaction and especially more touch than I can; she also clearly has a lot more support than I do. I get by. I’m not complaining. I’m not locked up any more; nobody gets to define food, water, access to a toilet, and privacy as “privileges” and take them away if I’m not “good” any more. But when, in Autism Is a World, they explain why she gets round-the-clock support services (I get none at all, though I do live with a roommate who is not compensated for my presence), they are describing me as well as her. And she’s very obviously much better integrated into her community than I am: the day someone delivers my groceries is the big social highlight of most 14-day cycles.

Then again, we are – right now, anyway – both identified as “bright” by a whole lot of people who clearly believe that some other people are “mentally retarded” according to the usual stereotypes. Rubin herself doesn’t come right out and say it, but the impression she gives is that she, unlike some other people, is not mentally retarded. We are both clearly capable (except to those people who refuse to believe that autistic people using keyboards are “saying” anything at all and, in my case, those people who believe that anyone with an IQ score under 85 is by definition incapable) of benefiting from formal education. So maybe we’re both high-functioning.

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Cal Montgomery, Defining Autistic Lives

This (and many other parts of the article) takes apart HFA/LFA bullshit better than I’ve ever seen. (And much of what Cal says of herself in that article is true of my life, particularly the parts about losing the things that some people would have possibly once used to define us as high functioning.)

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