I hate the label of Asperger’s Syndrome. I have some trouble with the official definition, that doesn’t fully acknowledge the reality of some problems faced by some people with Asperger’s, including me. For example, you have to dig very deeply into the details of the DSM-IV criteria to notice that self-help difficulties can actually present in adults, and that “no significant delay in language development” merely refers to one’s ability to speak by the age of three, rather than to actual problems with access to language, or some forms of language or language on some subjects, that might arise in older children or adults. These problems are all minor enough that I can deal with them. There are more important problems in the DSM criteria, including DSM-V, of the entire autism spectrum, such as the lack of recognition for cognitive and sensory differences in favor of increasingly more stringent social communicative criteria.
Why I do hate the label of Asperger’s, however, is not related to any formal definition of it at all, but to the popular culture definition of Asperger’s, that reduces us to Einsteinian accomplishment. I am not Einstein. I will never be Einstein. If for no other reason, then because I hate physics. Stop comparing me to Einstein, about whom we will never know whether he was truly autistic or not. Stop comparing me to any other presumed Aspie in history, or any presumed Aspie genius in the present day. Even if they are all Aspies, I do not share all characteristics with them, and even if I did, they’d still live in different circumstances from mine.
I don’t want to be told that I can only be proud of my “Aspie” self if I am like Einstein, or like any of the other celebrity or historic “Aspies” populated by pop “Aspie” culture. I don’t want to have to prove in any way that I earn the right to be accepted as a person with autism. Neither should any “lower-functioning” autistic.
I used to tell autism advocates that elitist autistics are extremely rare. That is until I realized that maybe they aren’t, only they don’t refer to themselves as autistic. Michael John Carley and Liane Holliday Wiley, whose books are populated as insights into Asperger’s, and a large number of Asperger’s people on forums, may not exactly be using Aspie superiority tropes, but they certainly more or less say that Asperger’s people really should be able to accomplish great things. Well, what if I don’t? What if I dropped out of university two months into it? What if I’ve been residing in an institution for over two years? Remember, Asperger’s Syndrome is my official diagnosis, so you can’t erase me from the “Aspie” community unless you amend the criteria for Asperger’s – in which case maybe you should be calling for its removal from the DSM anyway. You cannot distance yourself from me.
And even if you felt that, because I don’t wear adult diapers or head restraints, I meet your conditional criteria for inclusion in an acceptable “Aspie” community, I wouldn’t want to. Your “Aspie” community would still be exclusionary even if it didn’t exclude me personally. I don’t want to have to base my right to be accepted on some criterion that someone else might not meet. Exclusionist neurodiversity is not neurodiversity at all.
I am autistic. I mean this to incude the entire autism spectrum, including what is now diagnosed as Asperger’s. I don’t know yet where on the spectrum I will be diagnosed in 2013, but quite frankly I don’t care. If I am diagnosed as being “mild”, and there will be a community of “mild autistics” that explicitly excludes those diagnosed as “severe”, I will not consider myself a part of it. In fact, if I can give you, elitist and exclusionist Aspies, some advice, keep calling yourselves “Aspies”. There is nothing that forbids you from doing so once DSM-V is out. But don’t complain that we are excluding you. You are welcome in the autistic community no matter where on the spectrum you fall – and actually regardless of your DSM-IV or DSM-V diagnosis or whether you have one at all -, but please, if you want to be included yourself, don’t exclude someone else based on an arbitrary assessment of their “functioning”.
Other autistics I’m aware of (including people diagnosed with Asperger’s) who have called people out on Aspie exclusionism before I did: