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:
I kind of took a shine to the word “Aspie” when I first came across it, but that was before it had taken on the connotation of elitism. I’ve been using it, but I suppose I can give it up, now that it doesn’t actually refer to anything that exists. To me, it never did imply “Aspie Supremacy”, the idea of which I could never accept. To me, we’re all in “the same boat”.
[...] Update: After writing this, I read this great article by someone name Astrid who has Aspergers and think it’s a great counterpoint to what I said here. I now can’t imagine this [...]
Good commentary. Makes me wonder about the nebulous dividing line between Aspergers and not Aspergers. The truth is that we humans like to divide things into categories, while nature generally ignores such hard distinctions. Which heavenly bodies deserve the title “planet” and which don’t? Are these two birds different species or different sub-species? The way we divide people into categories is fraught with inconsistency. Even things like race and gender are not as clear as once thought.
Human physiology, psychology, behaviour, all of it is in reality a spectrum. Since we are essentially apes who are compelled to name and label things, we put arbitrary lines up starting from the center of the spectrum and call everything inside those lines “normal” and everything outside those lines “abnormal”.
Those arbitrary lines constantly change, because our culture changes, resulting in some individuals being able to thrive and some to flounder depending on the current environment they inhabit.
The spectrum of humanity does not change, it is the world around them that changes.
“Those arbitrary lines constantly change, because our culture changes, resulting in some individuals being able to thrive and some to flounder depending on the current environment they inhabit.”
This is something I’ve been researching a fair bit over the last few years and I have to say – you said it far more eloquently that I could ever have.
Astrid, I couldn’t agree more!
“… 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.”
Indeed. And one has to remember that – psychometrically speaking – clinicians use a 2-sd definition of significance, whereas the statistical definition would involve a 1-sd difference for something to be significant.
“I am autistic. I mean this to include the entire autism spectrum, including what is now diagnosed as Asperger’s.”
This is one of the things that – so I hear – Lorna Wing is saddened by … the idea she had behind the Asperger syndrome concept was not some exclusionist ‘sect’ within (but trying to be separate from) the rest of the autism spectrum. Asperger himself referred only to ‘autism’… but he saw it as a personality issue (although there has been some speculation that this was in order to help patients avoid the fate that could – in Nazi Germany – have awaited them ‘anytime soon’).
“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.”
Absolutely. Agreed – one hundred percent!
Can’t say much else… the whole exclusivist ‘culture’ makes me want to vomit!
all labels end up excluding. Although I was academic at school, I have had a pretty atrocious ‘career’ and health record. Nothing particularly remarkable.
I figure that if people could accept diversity, there wouldn’t be a need for labels.
I get bothered by the ‘superiority’ complex some have. I also find the ‘disability’ thing hard to grasp, as this is just the way me and my son are.
i completely agree with you here, we are expected to be either very high or very low functioning, and if we dont appear to fit into the first category, we are automaticly placed in the latter of the two, when in reality, we are not neccesarily going about it ‘wrongly’ but differently, for exampample if 2 people were locked out of a building, 1 might smash a window and the other might pick a lock,either way, we get into a otherwise inaccessible building but took different approachs to the same path
Its unfornuate that some people with Aspergers have taken on a attitude of superiority and that pop culture is calling us technically smart but cold and unfeeling technicians and nerds(very much not me). I am a nerd but much more of a nerd for the humanities and while I may sometimes anger people and make huge blunders in social situations I am not without friends and most people would have to say I am generous kind occasionally funny(humor being something we arent supposed to be able to appreciate) and the opposite of some tech geek. I do have a great memory, and terrible visual spatial ability. So it sorta balances out in the end. I have an uncle who is aan engineer. I think he is AAspergers too but we have sorta opposite interests strengths and weaknesses. I am very different from Temple Grandin, she says worlds are a second langauge and she thinks in pictures. I can remember images I suppose but not very well, and I don’t have a memory like google images for them like Temple Grandin says she does. I also have damn near no ability to place images in proper spatial relation to one another. For instance I could see a house thats a landmark on the way to where I am going and think I am going the right way but not realize the house should be on the opposite side and is a sign that I am in fact going exactly the wrong way. I have a huge vocabulary instead, and quite a good ear for music. My sense of sound is hyper powerful like Temple Grandins vision, music can be a religous experience or a hellish one, I can hear an ice cream truck from like ten miles away, I get overwhelmed in a large social setting by too many incoming sounds. My sight kinda sucks, its rather secondary to me. So therein lies a big difference difference between me, someone with Aspergers and what is called NLD(Nonverbal learning Disorder) and Temple Grandin who has Autism, we have different minds and I don’t see the harm in recognizing that, if we’re gonna be stuck with labels they might as well be halfway accurate. The problem here is apparently a certain arrogance foolishness and insecurity amongst certain Aspies, well thats unfortunate. The ability of Aspies to use verbal language without a noticeable delay, (despite using it rather different than the norm) makes us look or perhaps sound a little less impaired in the eyes of society, because we seem a bit less different. The less visbily Autistic struggle in life too, often without telling anybody.