Wednesday, December 17, 2008


Recently, I was reading Michael John Carley's book Asperger's from the Inside Out. At one point in that book, he starts talking about self-diagnosis. I don't have the book with me right now, so I'll just summarize what he says:
Firstly, he estimates 99.9% of self-diagnosed aspies really are on the spectrum (the .1% who aren't, he claims, are typically claiming to be AS because the condition they really have carries greater stigma). He says at first he felt it was just fine to be self-diagnosed, and gives an example of a self-diagnosed aspie he knows who is doing quite well. But then he noticed in his support groups that despite his 99.9% comment, repeated frequently, self-diagnosed aspies seemed much more likely to think that he doubted they were autistic. And this made him think that most aspies probably need a psychologist's confirmation in order to feel secure in their aspie identity.
This made me think. I've actually had two separate experiences of self-diagnosis on the autism spectrum. With the first one, the self-identification as autistic, my experiences are a lot like he says - I called myself 'probably autistic' until I was officially diagnosed. And deep down inside, I kept wondering if maybe I was actually stupid and rude, as I'd believed before self-identifying as autistic. It was my diagnosis of PDD NOS that stopped that.
For my second self-diagnosis, of pathological demand avoidance, an official diagnosis is just not possible. The only center that diagnoses PDA is in England and only sees children under 16 years old. When I emailed the author of the original description of PDA, she wouldn't even give me her opinion about whether I had PDA, based on my description of myself. So no official diagnosis. But now I don't really doubt that I'm PDA. And what happened to do that, is that my mother read the description of PDA and told me it sounded just like me. So, in essence, my mother diagnosed me.
I've heard autistics refer to themselves as 'self-diagnosed and peer-confirmed', meaning that they self-diagnosed, then met other autistics who agreed with their self-diagnosis. My self-diagnosis of PDA is a bit different, because my mother's not autistic, but it's the same general idea - a non-professional confirming a self-diagnosis. It seems to me that maybe what's needed, for many people at least, is just someone else agreeing with their self-diagnosis. That other person needs to be seen as knowing enough to make that judgment, and as someone who'd be willing to say straight out if they didn't think you really fell into that category, but they need not have a degree.
I also wonder if this uncertainty about self-diagnosis is itself an effect of how much the category of autism is 'owned' by professionals. Virtually all gay people are basically self-diagnosed, and it's rare to see such uncertainty among gays (granted, homosexuality is also much more easily defined, so that could be it instead).
Any thoughts?

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Thursday, December 11, 2008

Survey on Memory for Autistic Features

I just made a survey testing how well people can remember facts about individual (fictional) autistic people. You can take it here.

Tuesday, December 02, 2008

Wanting to be What You're Not

[Note: In this article, 'transgender kid' means any kid who fits the societal roles for the opposite gender better than they do those of their own gender. 'Transsexual kid' means a child who truly considers themselves to be the opposite gender, not just as a transient phase but as a lifelong identity.]
I just found an article by Feministe about 'gender identity disorder'. At one point, she quotes Kenneth Zucker, a psychologist well-known for his attempts to train transgender kids into fitting gender roles, who said:

"If a 5-year-old black kid came into the clinic and said he wanted to be white, would we endorse that? I don’t think so. What we would want to do is say, 'What’s going on with this kid that’s making him feel that it would be better to be white?'"

I agree. I would consider that black kid to have a problem* which is best solved by helping him accept his own race rather than changing his appearance. But there are some big problems with Kenneth Zucker's analogy.
Firstly, if I was trying to help that black kid accept himself, I would go about it completely differently. Imagine, for the sake of argument, that this boy is insisting on being white because he's not very musical, he does well in school, etc, and that just doesn't fit with his idea of what black people are supposed to be like. Rather than pressuring him to enjoy music more and be less committed to his schoolwork, I'd encourage him to broaden his concept of what it means to be black (actually, if I was his therapist, I'd probably refer him, because this is better done by a black therapist who can be a role model for him). I suspect at least some transgender kids are basically like this - they don't realize people can break gender roles and still be clearly of that gender.
It's possible, of course, that the hypothetical black kid is wanting to be white because 'white is better'. In that case, I still wouldn't try to make that kid act more conventionally black, because that's irrelevant. I also wouldn't denigrate white people, because racism isn't any better if you just switch targets. Besides, if this kid not only wants to be white, but actually on some level actually views himself as white, then denigrating whites would just make his self-esteem issues worse.
And that leads into another problem with this analogy. Whereas black kids who want to be white usually don't consider themselves white already - even on the inside - transsexual kids don't just want to be the other gender, they feel that they are the other gender. They just don't look like they are. That's an important distinction. The most important thing is for these kids to accept what they are, and transsexual kids are not cissexual kids of their natal gender. They are transsexual kids.

* I'm assuming it's been determined that this kid actually understands what black and white, as racial terms, actually mean. Lots of young children don't. I've heard of light-skinned black kids saying they're white because their skin is almost the same tone as the white people they know, or white kids expressing fear of black people because they're imagining someone whose skin is truly black (like a kettle) instead of dark brown.

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