I applied to join the hub, but no word yet. It’s been a month and a half and I’m sort of annoyed.

Regardless, I follow the blogs on the hub quite regularly; it’s a good way to pass the time at work, and not allow coworkers who pretty much fail at the comprehension of autism and epidemiology to get on my nerves too much (1). There has been discussion of late, especially on Sarah’s fabulous blog (which, reading sometimes, I wonder if the most expedient explanation for why I enjoy her so much is that we are actually the same person), of the idea that Asperger’s is a linguistic tool to try to divide the autism community as a whole.

When the majority is dealing with an increasingly uppity minority, the best way to get rid of them is to divide them. We see this in the black community (just look up “good hair” and see, or light skin), we see it in caste systems, and it’s quite evident in the autism community. Autism is a spectrum disorder, and those of us diagnosed with Asperger’s syndrome are, definitionally, autistic. What the inclusion of Asperger’s as a separate disorder does is twofold: it allows the people diagnosed with this “less severe” (read: more favourable, more normal, more valued) label to wish to distance themselves from those with “real” autism, and it allows those with more needs, who may be less well functioning in the way which society demands, (or their advocates) to say that those with Asperger’s aren’t really autistic. So rather than uniting and dealing with our collective shit, and sticking up for all of us, the autism community ends up divided between those who are too good to hang out with those autistic people, and those who would rather have the higher functioning group removed from the spectrum altogether lest they take up any of the limited resources doled out.

This is pretty much crap.

There is a parallel to be drawn to the queer community, which I am (ha) intimately familiar with. The most visible and most accepted groups within the queer community are people who, simply, are gender normative and gay or lesbian (this includes, to a degree, the likes of butches and femmes or bears). The others are…not so welcome, a lot of the time. Ask any bisexual (hey, comments are open and I qualify), and he or she will be glad to tell you about being discriminated against by both straight and queer people. There is an assumption that because there is a wider initial group to whom bisexuals may be attracted that their problems are more paltry, less worthy of discussion or consideration. This leads to some interesting but hurtful stereotypes (like bisexuals being sluts) which are not, on the whole, true. Bisexuals find themselves, like those currently diagnosed with Asperger’s, at a loss: they are not gay enough (autistic enough) for many queer groups, but they are not straight enough (NT enough) for many of their straight friends. Transpeople tend to have a similarly difficult time in the queer community, where many people, despite progressive attitudes about sex and sexual attraction, are just as conservative as their straight peers when it comes to gender.

In light of all of these thoughts, I’ve decided to start using autistic as a self-descriptor more regularly and hopefully to the preference of Asperger’s; I like Sarah’s tact of saying ‘Asperger’s autistic’, but find the lack of alternative (‘original flavour autistic’? ‘Kanner’s autistic’?) for those with other types of autism to be troubling. I can’t quite believe I’m saying this, but I’m looking forward to the next DSM (which is looking like it’ll be a bit of a joke, unfortunately), as I heard a rumour they were taking Asperger’s out and going with a numerical scale. While this has its own problems, it solves one language-based issue, and for now, I’ll take it.

Furrther reading:
Cat in a Dog’s World

1. Sample question: “But…why has the rate of autism gone from, like, 1 in 10,000 to 1 in 150 in the past twenty years?” Sample answers: “Well, first, there’s a lot of diagnostic substitution going on. A lot of the kids we see here would have been called intellectually disabled or possibly schizophrenic twenty years ago. Also, in 94 the diagnostic criteria were broadened significantly, and now include Asperger’s, which includes people like myself. I was never diagnosed as a child but I have been as an adult because, well, I meet the criteria and knowing this has helped me clarify my life. Kids like me would have been missed entirely a generation or two ago. Also, if you’re trying to imply there is something nefarious going on, I would be happy to point you towards studies that refute whatever you’re thinking of.” He did not like this answer..

Tags: ali, asperger's, autism, meta, utter pedantry