Sunday, December 2, 2007

By any other name

I’ve been asked by a few people, “Why do you call yourself autistic if your diagnosis is Asperger syndrome?” Most of the time, I don’t feel compelled to answer such questions. I don’t go around challenging people on what they call themselves. I imagine I’d be perceived as quite rude if I did! And I understand the layers of implication behind this one. It’s a heavily charged question, usually posed by someone who has a stake in what is and isn’t called “autism.” What they want to know may be, “Are you trying to speak for my child?” or in some cases it’s more like, “How dare you use that word to describe yourself when you can do things my child will never do?”

The answer to the first question is simple. No, I’m not. I’m talking about my own experience here, and occasionally about things I’ve learned from other autistic adults. The second one is far more complex. To answer it would take several pages of text explaining what culture and language mean to me, the history of various civil rights movements, the concepts of medicalization and of disability as a social construct. Beyond that would need to be a discussion of the variability in normal autistic development, what it means to believe a child will never do something, the fact that there are some things I can’t do that might surprise the askers of these questions, and the absurdity of anyone assuming they know something about my general level of functioning just because I can write.

These are only a fraction of the issues this seemingly simple question can stand for. There are people who want to see Asperger syndrome removed from the Pervasive Developmental Disorder umbrella, away from autism in the DSM to an area in the ADHD or NVLD neighborhood. Now I can’t say for sure, but I think their goal is to shut people like me up. There are people who imagine that my statement regarding my identity, “I am autistic,” will cause harm to someone who needs a particular treatment to live a fulfilling and happy life. Maybe the general public will see that autism is multi-dimensional and not such a tragedy after all. Contributions to “autism charities” might decline. The all-consuming search for a “cure” could come to a halt. People might start to think autism means something like the condition Kanner described in 1943, that it has more to do with social and communication differences and with repetitive interests and activities than it does with using the toilet.

I’m pretty sure I don’t have that kind of power.

Then there is the opposite question. Why use the term Asperger at all? Are you trying to set yourself apart from other autistics? And that’s a reasonable question. Because I’ve seen people do that, and I’ve seen it be quite ugly. I would like nothing better than to draw a line between myself and those few people who believe they are superior, either to neurotypicals or to so-called low-functioning autistics. My relationship to the term Asperger has evolved considerably over the past few years, and if I were starting this blog today, it’s likely I would give it a different name.

On the other hand, there are particular brands of stigma that go with “Asperger syndrome” and these need to be addressed, too. In some contexts, AS is seen as “worse” than autism, as we are seen as fakers, whiners, or excuse makers. Check out Urban Dictionary to see what some people think about those with the AS label. Of course, these negative images of AS may have a lot to do with the vocal minority of arrogant Aspies and their superior race rhetoric. By identifying myself with the Asperger label too, I can hope to attract a few to this site where they can read another perspective. That we are not better or worse than non-autistic people. That we are not better or worse than other autistic people, either. That diversity really is not about scrambling to be the best or the worst.

In assigning my “label,” the diagnostic team made a decision based on whether or not I was able to use meaningful phrases by the age of three. That’s what they told me it came down to. They considered me to be autistic. And so do I.

My next post will address autistic culture and why I find it important to align myself with it. I expect other topics will evolve from this post, as I’ve scraped the surface here of quite a few subjects requiring further exploration.


  1. "Maybe the general public will see that autism is multi-dimensional and not such a tragedy after all. Contributions to “autism charities” might decline. The all-consuming search for a “cure” could come to a halt. People might start to think autism means something like the condition Kanner described in 1943, that it has more to do with social and communication differences and with repetitive interests and activities than it does with using the toilet."

    Er, just to check, that'd be a good thing, right?

  2. All depends on one's perspective, I'm guessing. But from where I sit, yeah.

  3. Another very intersting post. I have been wondering about this for a long time. I am not autistic myself, but I have a lot of autistic friends. I read somewhere that Asperger's was "autism without the language difficulties", although the book went on to say that Aspies still had semantic-pragmatic difficulties and speech shutdown due to shyness and/or sensory problems. But that doesn't fit the people I know with AS diagnoses. They have difficulties with speech which can't just be explained by shyness or sensory overload. And people I know with an "autistic" diagnosis don't all have problems with LANGUAGE. They all have problems with speech, but some can write extremely well. And some of them can't. And some of them can write very well in terms of content but can't spell. Others have no problem spelling but can't express themselves very clearly in words (whether written or spoken.) O And some of the people with the most severe speech problems have the fewest problems with written language. I came accross your site through the link on Amanda Baggs' blog - she's probably the best example of this that I know of.
    As I said in response to that "squares" I'm dyspraxic. In the USA, dyspraxia is called NVLD. I think they still use the word dyspraxia, but it refers exclusively to co-ordination issues, not to problems with memory, processing, social skills etc. I think it is related to autism, though I wouldn't class myself as autistic. I know a lot of dyspraxic autistics, with various diagnoses (one woman has been variously labelled with PDD-NOS, Asperger's, hyperlexia and Unspecified Autistic Spectrum Disorder.) However, I sympathise with your opposition to the whole mild/severe distinction. I was told I was mildly dyspraxic because my difficulties with handwriting quality were mild. My difficulties with handwriting speed, gross motor skills, balance, socialising, memory, processing and organisation were ignored. If you can write legibly you can't be dyspraxic, apparently.
    And people who can speak (or sometimes people who can communicate in any way) can't be autistic. That's such a good excuse for curebies to ignore what autistics actually think. Because they can say that if someone is capable of saying what they think, that person can't be autistic. And OBVIOUSLY curebies are the only ones with the magical power to guess what "real" autistics actually think.

  4. I’m pretty sure I don’t have that kind of power.

    Individually, no, but large civil rights movements start with a few individual voices. Barack Obama has given some speeches recently in which he describes how that happens: first one person stands up for what is right, then a few more are inspired to do the same, then hundreds stand up, then thousands, and finally millions.

    WE have that kind of power. :)

  5. From where I sit it'd be pretty good too. "autism charity" looks too much like "extermination crew" for my liking.

  6. In many respects, the parents and children that I feel 'most sorry for' share a similar label, the 'whiny' one, where the general public has little, if any understanding or support.
    Best wishes

  7. another,
    Please include a jpeg of your official papers to prove you are a true "person with eccentricity."

  8. Great post, Bev.

    I've never understood the whole "Asperger Syndrome isn't really autism" business. Hans Asperger called it "autistic personality"; I don't know why Kanner's use of the word "autism" is the "right" one and Asperger's is not. Especially considering that they both used it very differently Eugene Bueler did 30-odd years before.

    I'm really looking forward to Part 2.

  9. Some of the people asking you this question may also have another thing in mind:
    "Autism is very bad, it usually comes together with mental retardation, we know that it is a tragedy for the family and the person having it has no skills to cope with life. Asperger's is not so bad, some of the people having it are very smart, good at their jobs, can achieve some sort of success. So I am wondering why you voluntarily put the worse label on yourself."

  10. Yes an interesting post. Thanks.

  11. I enjoy your posts so much. I am interested to hear what else you have to say on this topic. My daughther has quite the mixed diagnosis and I always wonder what the differences are between all the different forms of autism. If I go by the definitions she could fit many of them.

  12. Yes, very, very ugly when folks use the Asperger distinction to set themselves apart as the "good" autistics. Or when somebody does it for them. Same with "high functioning" and "low functioning" labels. Dangerous as hell, and yeah, I hope people looking for information end up here and not on one of those "superior race" crapola sites. I feel much the same way about "gifted adult" communities. Though the danger in that sort of perspective is not so much that anybody will actually *buy* the idea that Aspies are somehow superior, but that the authors of that sort of rhetoric will just look like damn fools and give folks the impression that we're all damn fools.

    What's a much more formidable danger lies in something akin to this: "Oh, you're okay, because you can talk and hold a job. But *some* of these people can't function at all -- just *look* at them!" Anybody who perpetuates that crapola, and doesn't realize the absolute folly in failing to recognize our inherent brotherhood with autistics on any color of the spectrum is committing a slow and nasty suicide. If today it's bowel incontinence that deems your life not worthy of a place here, tomorrow it may damn well be awkward patterns in conversation.

  13. My apologies for using the word "crapola" twice. And now thrice.

    1. No, please, carry on! xD

      U made some excellent points, crapola et al.

  14. "Things my child will never do" sounds to me like they've given up on their child. I would "never be a people person" I'm now a director doing much business development. I served in the Air Force. ok, I lied about my asthma. Yes, we can lie. And as a child I wore braces on my legs like Forrest Gump. My trigonometry teacher said I woukdnt amount to much. I became a Space Communucations engineer and rose to the rank of Senior Principal Engineer. I've bedn. Chief Technology Officer. And these are just some examples of things I wpuld "never be able to do". Oh, and I'm still autistic! lol Happy to be so. I work on my shortcomings, but also, to a great extent, it was the positive aspects of autism that helped me get to where I am. Autism is like the hand that you are dealt in a card game. It's very important how you play it. Long live autism! :-D

  15. Oh, obviously, the braces I had in my legs as a kid had nothing to do with being autistic. But still, don't give up on people. I went on to become a pretty good sprinter. It's a curse when people think that people with certain disabilities have a curse and its prejudice when they say that those of us with certain impairments won't "ever be able to do something" and I find it also insulting. Bev, thanks for sharing your experiences and thoughts. Brought back some memories.

  16. Me: "I'm autistic"
    Other: "I'm so sorry."
    Me: :-O "Sorry about what? I'm feeling OK"
    Other: "You must have some form of imbalance"
    Me: "We all have our peaks and valleys, some just more accentuated than others." *walking on tippy toes*
    Other: "I have something that can take away your discomfort so you won't have to walk on your tip toes"
    Me: "But I feel perfectly fine walking this way, until you brought it up"
    Other: "are you sure?"
    Me: *grrr* "I'm now starting to feel unbalanced. I bet if I hung out with more people of my type id feel right at home."
    Other: "Is there anything I can do to help about your disability"
    Me: "I should have never mentioned it" *catches self in the beginning of a stim and squelches it*

    This type of interaction prevents me from being myself in public. I can pass as an NT for extended periods of time, but eventually I must come up for air. xD

    Oh what it must mean to be autistic and liberated!

    Maybe the first people to Mars will be a bunch of autistics so that we may start a colony to our liking and we will offer accommodations to neurotypucals with special neurotypucals needs. xD


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