more on labels and identity

So apparently some people out there think that everyone on the autism spectrum should call themselves “autistic” and that words like “aspergers” are harmful and should go away.  I’m still undecided on the whole “autistic” thing, but I do know that I don’t think the arguments for it are good ones.

There are some Aspie supremacists out there.  I’ve run into one of them on the internet.  Once.  And by the time I ran into that person, he was already re-thinking his stance.  Of course, it’s still possible that there are hoards of them out there and I just haven’t run into them yet.  In any case, one of the arguments against the word “aspergers” is that anyone who uses it is, deliberately or not, aligning themselves with these people and reinforcing their point of view.  I don’t buy it.  There are a small number of extremist feminists out there too – the ones who really are the “man-hating female supremacist” stereotype that gets bandied about.  I do not, however, think that everyone who uses the word “feminist” is trying to align themselves with the extremists, nor do I think the the extremists gain power by all the reasonable people who use the word.  In the same way, I don’t think it applies to aspergers either.

I’m just going to quote another point: “They serve to alienate those of us who do not use that kind of terminology, and those who have never received the “Asperger’s” diagnosis, by separating one group of Autistics from another.”

I’ll be honest.  I have absolutely no idea what this point is trying to say, and as such, I really can’t refute it.  I am simply too confused to be able to do so.  I do, however, know that I tend to feel alienated when someone tries to tell me how I should identify.

One of the big arguments refers to the DSM-IV (which means the argument may be moot by now, but anyway): “The only current diagnostic difference between receiving a diagnosis of Asperger disorder or Autistic disorder is that in order to be diagnosed with Asperger disorder, an individual must have “no clinically significant general delay in language.”1 There is no other difference in diagnostic criteria”

This is something I’ve heard a lot of.  A WHOLE bleeding lot of.  I finally decided to look it up for myself, and I discovered that there are, in fact, differences beyond the language thing.  The first section, “social interaction” of Autistic Disorder is exactly the same as the first section of Asperger’s Disorder.  Identical.  However, immediately after that autism has a whole section regarding “qualitative impairments in communication” that asperger’s lacks.  It has the oft-cited optional delay or lack of spoken language, but also includes impairments in the ability to initiate or sustain a conversation, stereotyped and repetitive use of language, and a lack of spontaneous make-believe play.  None of those things are in the Asperger’s criteria.

Then there is another section, “restricted repetitive and sterotyped patterns of behavior,” that is once again the same in both criteria.

However, beyond that there are two more differences between the criteria.  Autism requires that there is some sort of delay in functioning with an onset prior to three years of age.  That alone means I likely could not be diagnosed with autism under the DSM-IV.  As far as I know, my social challenges really started to show up in kindergarten, which is definitely too old for autism.

Additionally, along with language delay being contra-indicated in Asperger’s, there must also be no clinically significant delay in the development of self-help skills, adaptive behavior, and curiosity about the environment.  So a person that had significant delays in learning to use the toilet or dress themselves would not be able to get a diagnosis of Asperger’s.

I will grant that the differences are few.  I will grant that the line can be blurry.  Nonetheless, it is simply not true to state that language delay is the only difference between the two diagnoses.

Getting back to calling it all autism, one thing I have wondered about is how those who are diagnosed with autism feel on the matter.  It has been surprisingly challenging for me to find much of anything on the topic, but I did eventually find this:

“I have a classic autism. I was nonverbal when I was young, but learned to verbalize. I do not have Asperger’s Syndrome.”

So I can say that there is at least one autistic person out there who is likely not in favor of everyone on the autism spectrum calling themselves “autistic.”

Finally, I really can’t be in favor of telling other people what to call themselves or how to identify, especially given how murky this area is.  Much as it’s uncool when a neurotypical barrels in and tells a bunch of aspies and autistics that we should really call ourselves “persons with aspergers/autism” (I plan to write more on that in the future), it’s also uncool to tell me that I don’t get to call myself an Aspie, even though I’m diagnosed with Asperger’s and that’s the word that fits me best.

That said, I am increasingly wondering how the new criteria for the DSM-V is going to impact this particular social debate.  I also really wish I could find out more about how people with “classic autism” feel or think on the matter.  As it is, I think I’m going to continue to call myself an Aspie for the time being.


Filed under ponder

4 responses to “more on labels and identity

  1. Tricia

    “I have absolutely no idea what this point is trying to say, and as such, I really can’t refute it. ”
    This made me laugh because that’s exactly how I was looking at that quote!!! What the heck was the person trying to say?

    And I agree with you that Aspie and Autism are not the same. Yes Aspie is on the spectrum, yes autism is a spectrum disorder, etc etc.

    There is a reason why humans use labels. To help us identify and categorize. Use of labels helps and hurts us, but you can’t get rid of labels. I mean, what would I call those that I label family if I didn’t call them family?

    If someone wants to use Aspie as a label instead of autism, I see no problem with that. If someone wants to use the broader autism label instead of Apsie, ok, go for it (assuming that said people had done their research like you did.) But to demand that everyone else toe your line? No thanks.

  2. Let us not mince words here. Before the spectrum was divided into “low functioning”, “high functioning”, and “Asperger’s Sydnrome”, you basically had one stereotype and were told “this is autism, period”. So the use of functioning labels has been quite beneficial to people like myself who have severe difficulties in interacting with dishonest or poisonous people, but do not start screaming and hitting ourselves at the sight of steaming water.

    As I have written on my own journal, however, whilst labels that clarify how we are different (and there should be more of them) are a benefit, allowing norms to use them to divide us is a big, big problem. I do not feel the solution is to do away with the different labels, though. That would only give control of public consciousness of autism back to the like of Ronald Bass, and nobody wants that.

    And for the love of Odin, I am sorry I have to keep saying it, but implying in language that autism is somehow a separate entity to us as opposed to something that is part of us and has shaped our experience of life for as long as we can remember is WRONG. Not just wrong in the sense of “I thought you said you want X”, but wrong in the sense of “2 + 2 = 5”.

    And contrary to one statement, educating and coordinating the movement in order to present more of a unified front will benefit us all. I could go on all day about why so-called “person first” language actually puts the person *last*, but instead I will just point out that merely hearing it makes me feel like I have been stripped down and smeared with someone’s waste. Queenslanders might think I should have to explain that to them three or four times. But I expect autistic adults to be better than Queenslanders.

    Oh, and I will read more of this journal in good time. So far what I see is quite interesting. Except maybe for the background (my eyes hurt a bit).

  3. Publius

    This is one of the most pointless debates of the 21st century, similar to the neverending “Autistic/person with autism” battle raging on in cyberspace. I know people who have these disorders want to categorize themselves (or lump themselves all into the same category), and if that’s how they want to expend their oxygen, God bless em. But medical experts have outlined the criteria for disorders such as Autism and Asperger’s, and guess what? Those definitions work fine. If a doctor tells me I have cancer, I’m not going to say “you know, I’d prefer if you said I had tuberculosis”. The Autistic communtiy wants equal rights and representation; if they want that, they’ll have to stop getting distracted by the non-issue of names and labels.

  4. lee954

    I’ve got Asperger’s syndrome and believe that its existing seperate status should be maintained. I’m convinced that Asperger’s and autism are not related at all, or are possibly opposite extremes of one psychological trait.

    It’s very easy for me to tell the two apart: people like myself with Asperger’s syndrome want to fully participate in society but we’re rubbish at socialising and so frequently live isolated lives, whereas people with autism just want to remain in their own private little worlds.