And Stimming With Rainbows of Every Design

Tuesday, June 12, 2007

Finally figured out my problem with most autism discussion groups

I'm afraid I'll get flamed into oblivion for writing this post, but oh well.

I think I have *finally* figured out what it is about most online autism communities, even those populated by actual autistics, that drives me away.

I've never been able to enjoy the forums at Aspies for Freedom and WrongPlanet. I have been able to partially attribute it to the chaos of the message board format, to the self-hatred of some members, and to claims on some members' part that some types of autistics, though not their type, need to be cured.

When I wandered back into a few two or three days ago, I realized that there's another attitude in those groups that really freaks me out. (Disclaimer: I do not mean that all members have this attitude, I'm just referring to an overall viewpoint that I've seen.) It's a sort of medicalization, in terms of fitting one's existence, or another's into medical categories, but medicalization doesn't even seem like quite the right word.

It seems almost more like some sort of "Autism Expert" worship, combined with word worship. (Note that this doesn't include all "experts" though. Most specifically it excludes anti-vax fanatics, and those who claim that ABA is the only way to "treat" us. The group that is most commonly used seems to instead be those who theorize about our internal state and social "problems.") If some "Autism Expert" comes up with a theory about our "social deficits" or "cognitive deficits," a bunch of people will spend time trying to cram little bits of who they are into the wording that the professional used. It's like there's an idea that if there's a word for it, it's right.

I see discussion of whether fictional characters are "high-functioning," "low-functioning," or in the middle, and arguments over this, with very little criticism of even the concept of functioning labels being accurate. I saw similar with people arguing over whether my favorite fictional character is Kanner or Asperger type autistic, but didn't see anyone arguing that there really is no difference. (I would have charged into that one, but it seemed too late.) I see people discussing how something demonstrates their lack of Theory of Mind, or their lack of empathy. I see very little criticism of these concepts, even if they aren't necessarily accurate.

I saw one post (and I'm really afraid someone will come and flame me for pointing out a specific) that said that Temple Grandin said that we couldn't have complex emotions. There was nothing implying that she could be wrong, it just seemed to be something like, "Grandin says it and Grandin is God." In my opinion, she's not infallible, and she's not perfect, and, as one autistic, she isn't able to describe what every single autistic can and cannot do. Her ideas about "low-functioning" autistics also infuriate me, but that's a message for another time. (I will say that I don't dislike Grandin completely - I met her at a book talk in Sacramento, and she seemed nice enough.)

In contrast to these groups, and these posters, the autistic people I get along with best, like me, are willing to question professionals' assumptions about us and what goes on in our heads. They don't try to twist everything into some sort of deficit that someone with a Ph.D. and experience with (though not necessarily understanding of) autistics came up with. The same goes for the groups I've been in, but since every group with a certain number of people attracts people with this viewpoint occasionally, I have times where I have to take a break. Despite my occasional complaints about it, the Asperger community on LiveJournal has been the best thus far, and is neat in that there are always people around who will correct the myths of "lack of empathy."

With regards to the other groups though, I just have never gotten along with people who are not willing to question ideas. I'm realizing that a lot of these people don't primarily perseverate on autism, and may have gotten a lot of information from stereotypes and newspaper articles. Problem is that I perseverate on autism, and am also unwilling to trust so-called professionals just because others consider them experts, so I'm bound to conflict with a bunch of people on the boards, or just to get so frightened by their lack of doubt that I run away before posting.


  • Re: Grandin- Temple Grandin certainly isn't God, or even necessarily right all the time. She's got a theroy (although it's stated as a fact) that animals which are partially or entirely white are more prone to be aggressive and/or crazy (she uses dalmatians as her dog example, and yes, they're mostly white, but they were also bred for centuries to be GUARD DOGS, which I suspect has more to do with their protectiveness that becomes aggression in poorly bred dogs. Her other example is overo ('baldfaced') pinto horses and she links 'crazy' behavior to blue eyes- and I *KNOW* that's just an old-wives tale!) So.. yeah. Grandin. A neat writer, a neat lady, someone I'd love to study under if I ever get that degree in ethology I keep talking about- but not infalliable.

    I'm in sort of a similar boat with the online Aspie community. I identify as an Aspie, and I am diagnosed- but I find SO many people online that are SO ... oblivious? Socially inept? Aspieness covers some of it, but certain individuals (not a majority, but a significant portion) can be such JERKS, and when called on it, claim it's just part of being an Aspie... I do NOT think being an aspie exempts one from learning manners, and reciprocal courtesy- even if you don't always understand WHY things are a certain way, learning the motions of courtesy are pretty easy.

    *grump* And now will stop to avoid taking over your blog with MY rant. :P Sorry about that! Hi! I've lurked for a while. Neat blog!

    By Blogger Cait, At 1:51 AM  

  • I get really tired of the tendency to unquestioningly see oneself as a theory rather than a person, too.

    By Blogger ballastexistenz, At 6:52 AM  

  • I agree. Recently something on the WP IRC ticked me off a lot. Apparently HFA people (and I put absolutely no stock in functioning labels, I myself being all over the board) don't talk although they can because it rings in their ears. Um no. I really don't think so. There's a possibility that could've been, and might've been even (there's a lot I don't know thanks to mom & dad) been MY diagnoses. I don't think my own voice EVER bothered me. I'm someone who chants things over and over because I LIKE their sound.

    Another thing that annoys me is people who assume it's just social ineptness. Maybe with SOME people. But not with me. Never has been.

    WrongPlanet et all annoy me on so many levels.

    By Blogger unashamed, At 11:32 AM  

  • I've sometimes felt sad or even angry about my Asperger boyfriend seeing his AS as a "bad thing" and saying that most other AS people he's met seemed "lower functioning."

    And indeed, there do seem to be a lot of people on there who talk about themselves in terms of "symptoms." I even feel a little like rolling my eyes or getting snarky when people talk about their "stims," "perseverations," and "meltdowns." Whatever happened to fidgets, interests, and emotional reactions? We NTs have these things too, but they just tend to take different forms.

    I used to do the same thing with ADD, I've been there. But now I believe my ADD diagnosis was a mistake.

    One thing I do like about popular autism forums is the fairly frequent posting of reversals - a good example was a recent thread on Wrong Planet entitled "NTs Lack Theory of Mind." Besides having a naturally self-deprecating sense of humor, I also realize the truth in saying that we "normal" people have our own problems with obsessions, perceptual deficits, empathy, and theory of mind. People could play up our negatives and ignore our positives if they wanted to. Autistics could tell us that "we can't be neurotypical" or "we must be high functioning" because we're intelligent and analytical, and then wonder why the hell we can't see something that they see or do something that they do. A lot of what is said about autistics can be said about us, too.

    By Blogger reform_normal, At 9:59 AM  

  • The problem is not with the concepts themselves, it's with how they are expressed in vague, unspecific definitions, experts have an idiosyncratic (and perhaps idiotic) way of saying things.

    With autistics and aspergers, there are GENUINE functional deficits in relation to how they have to function in the world.

    For instance, I was officially Diagnosed with aspergers @17 ish, at first I didn't believe it since it came out of the psychiatric industry and as I've got older, I've had MUCH more time to analyze the literature and how my mind functions and read about how other neurotypical people function in teh social and relationship world and my experiences socializing around NT's.

    I had a friendship with a lesbian woman and I could tell RIGHT AWAY that I was "different" (and by different I mean I knew exactly what my mind found hard or almost impossible to do that other people could).

    She would weave these fantastic analysis of social behavior and what people were thinking and what they would do next in simple fashion.

    And I realized I didn't have this in ANY capacity, I cannot predict peoples behavior. I can assess their character after repeated exposure with very high accuracy, but I can't grasp their needs unless they are explicitly told to me or I find another person who's like someone I know who's explaining their needs in a logical / intellectual fashion...

    I usually frequent relationship boards and read what women have to post and find the women with extreme insight and are able to express how their minds and body's work and what they need in a logical fashion and I add that to my understanding.

    By Blogger Bakka, At 11:43 AM  

  • I have found these similar problems with the discussions. I remember when I was first exploring autism seriously that I got a bit caught up in the theories - such as the "Extreme Male Brain Theory" and some constructs of my own.

    These I think are mostly about trying to establish another aspect of one's identity, and the tendency to obsess on objects of research often have the pitfall of "centralizing" the individual based on autism, and then the secondary pitfall of focusing on whatever theory(ies) of autism happen to be in vogue, regardless of how flawed or simplistic.

    I remember once being one of those Aspies who thought of cure being reprehensible, except for when the case of the "low-functioning" people. I think that this ignorance in part stems from the fact that so many of the times, when the pro-cure people refute anti-cure arguments on the basis that HFAs "don't know what it's like for those real, suffering autistics". Out of ignorance, we don't want to seem like jackasses, so we concede to them, "well, okay, so you can cure your low-functioning kids, just stay away from us". It is a method of appeasement.

    It can take some time for people to realize how little sense this makes. Another complicating issue is for the Aspies who have special gifts in areas such as math or science (others, too, but these do appear more common), who do not feel disabled at all, or who feel that they are hardly at all disabled, and so have trouble understanding the perspective of autistics who are more disabled.

    For most people, this ignorance I think can be cured by opening their eyes to these issues, which are not so clear as they might have been thought. Of course, there will always be closed minded people who will not consider others' perspectives, and for them, I truly feel sorry.

    By Blogger AuStim, At 3:15 PM  

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