12 January, 2011

I know this is problematic, bear with me

On tumblr Josh reblogged a post called how to respect someone with asperger's syndrome. I'm sorry to tell you that at this point in my life I'm so grossed out by the word Asperger's that I actually didn't want to reblog the post just because of this, even though the post was really good. But then I thought maybe I could reblog it because I noticed that Josh had added the following:

I identify as “autistic” or “ASD” now instead of aspergers. They’re both an accurate description but “aspergers” seems so tied up with a stereotyped image of ultra-male brained maths geeks that it is of little use as a way of explaining myself to people.

So I wanted to reblog it and add my own thing to that (although I also agree with what he said) but then I was like, wait I bet my own thing is going to be ultra long and should probably be...

Somewhere Else!

So. I've actually posted about this a ton of times--the whole identifying as Autistic/ASD/having autism, rather than Asperger's, thing--and so has everyone else in the world, but I always find myself having more to say about it. There are two explanations I have used, either separately or together.

1. "Asperger's isn't my only ASD diagnosis and besides, if forced to choose, I think my other diagnosis is more accurate." This is true and it's an explanation I really like because it sounds more straightforward. Except, I happen to know that this is a really weak excuse because I've known about all my diagnoses longer than I've been using the word autism/ASD about myself. So that's not it.

2. Blah blah blah politics. The political explanation is something about wanting to show solidarity across the autism spectrum because those categories are artificial and badly defined, which I totally support of course--but that doesn't explain my intense hatred for the term Asperger's. Like, I actually cringe if someone uses it about me and I don't think any of my friends or even my parents would use it about me at this point.

So is this because autism sounds cooler? Because I want to shock people with a really stigmatized identity? I've definitely seen this accusation leveled against people with AS diagnoses who identify as A/autistic, and this was definitely the reason for my identifying that way when I was fourteen, but yeah I don't think it's true anymore now. So why is this word so important to me--solidarity aside, on a pure individual level of the word I like to use about myself?

Okay, so:

I think there's a certain point of mildness, or invisibility, or lack of certain support needs, at which a person with a disability is kind of existing with a foot in another world. I don't use this term to imply something about people with ASD being from outer space or whatever the line is; especially as I'm not just talking about people with ASD. I'm thinking of people with mobility disabilities who don't use wheelchairs, people who are blind who can sort of see well enough to fake it, and people with ASD who can--well, talk pretty fluently, I guess. I'm not using the word pass because I think there are definitely some people who don't pass and still belong to this category.

What's odd about having this kind of disability experience is that people don't read you as disabled in such an immediate way, and you can kind of fit into images of non-disabled people (even if you don't do it well). And you end up feeling, rightly or wrongly, that disability isn't going to suffuse your life the way it does for those other disabled people. You can just do what everyone else does.

And for some people maybe this is really true, and for some people it becomes clear that it's not. And some people like me will have the heady and crushingly depressing and exhausting experience of having that thing be true and false at the same time. But if you're going through this and there is any misery at all, I think you have to be able to know that there really is life in that other world you have your foot in, the world of what you think of as failure--people who need staff and dogs and letterboards, people who can't hide from it like you can.

You have to know that you haven't escaped. Or even if, like me, you keep kidding yourself that you have escaped--a part of you has to be able to tell you that disability is a piece of something inside.

I know analogy is dangerous, but this all clicked for me with the thought of cerebral palsy, just because I knew a few people who had it and I knew it could mean a lot of different things and look a lot of ways, and some people were in my category of attempted escape. I thought of a person who could walk saying honestly, "I have cerebral palsy," and for some reason this was so beautiful it made my head explode.

For me, saying "I have autism" to people who think of me as normal--to whom Asperger's is this quirky 21st-century meme that is almost just a Myers-Briggs personality type--is a way of saying, parts of me are falling off, parts of me belong to this huge sometimes silent country, no matter how I look I am (genetically and deeply) one of the people who most of the world doesn't want to exist--it's this huge, almost spiritual thing.

It's so weird when people will kindly try to tell you, more or less, that you've escaped and you shouldn't use that word. Because Jesus, so much of what my brain feels and does is so terrible, but having a word for it and having a home is the most beautiful thing.


  1. "...I think there are definitely some people who don't pass and still belong to this category."

    Yeah, I think this is me.

    "... [people] to whom Asperger's is this quirky 21st-century meme that is almost a Myers-Briggs personality type ..."

    Haha! Nice characterization; the pop-culture idea of what Asperger's is *IS* a lot like a Myers-Briggs personality type!

    (Especially since the Myers-Briggs is essentially an Introvert Detector, and the pop culture understanding of Asperger's is that it's introversion on steroids).

    For me, not calling myself Asperger's for most of my life was more a historical accident than a conscious choice. (It's a choice *NOW*, now that I understand the politics better.)

    I was diagnosed before Asperger's even existed, and for most of my life when I was telling people about it, nobody knew the word Asperger's --- they knew the word "autism," so I told them I had "a form of autism."

    And that has worked pretty well.

  2. Okay so totally not on topic but I just saw your last post on tumblr. I can't reply and you don't have an ask box and I don't want to reblog it to respond cause.. I don't know, I don't want to talk about it there. I won't write too much here because it's off topic and I don't want to be annoying or something --
    I've never had sex and I'm 22. Do you really think this isn't normal? You said you weren't kidding. I just wanted to say something to the point of 'you're not the only one'.

    Also, somewhat related to your actual post here - re: ultra-long posts on tumblr. I'm kind of afraid of posting things on my tumblr because tumblr is supposed to be for micro-blogging. But I don't mind other people's long posts there.

  3. Just because you identify with something, and agree on using a label doesnt make you an instant poster child, (although people tend to see it that way). there are alot of things I have called myself over the years that I no longer identify with. (punk being one of them):)
    Dont get trapped in words and labels, you can always change your mind :) That said, I dont care what you call yourself. I call you friend.