And Stimming With Rainbows of Every Design

Wednesday, June 20, 2007

No, I am not a teaching tool.

This graphic is my response to the idea that autistics can be used as teaching tools for non-autistics curious about autism. I've heard enough about how I should educate everyone I meet that I've gotten annoyed by now. I'm not an encyclopedia, not a how-to guide, and not a textbook. I'm not a translation guide either. (Image made with the free program DrawPlus.)

Click to enlarge. Clicking again in Firefox gives me the best result in terms of clarity.

(In case anyone can't see the image, it's a book called The Ultimate Guide to Autism and subtitled "Autism encyclopedia, dictionary, and how-to from the inside!" On the upper left-hand corner is text saying "With rave reviews!" There is a blue-and-white wave thingy below the subtitle, and then below the wave the bottom half of two legs with feet. The whole image is surrounded by a circle with an "x" across it.)

This is what I'm supposed to be? I don't mind educating, and think it best that actual autistics do the educating about autism, but that doesn't mean I want to be turned into a teaching tool and a teaching tool only.

I'm tempted to maybe modify this a bit sometime (it would need to be enlarged at least), and turn it into a t-shirt with text on the back that says something like, "I am not your autism textbook."

Tuesday, June 19, 2007

But they're all so nice!

This rant has been long forthcoming. It is the result of a buildup of things I’ve seen said over the years, combined with what looks more like the reality behind what people say.

So many places I go online I run into people discussing how developmentally disabled people (oftentimes just those described as “mentally retarded,” but also often all of us) are always sweet, gentle, kind, pure of spirit, angelic, innocent, harboring no “bad” thoughts or emotions whatsoever. They say that it’s intrinsic to who we are.

It never made sense to me that the result on one test designed to measure “intelligence” (and no, I don’t trust IQ testing to begin with) would have anything to do with those traits that I described above. When I think of this idea, I think of an imaginary tube of a certain volume that some people claim must be real. “Kindness” and “intelligence” are supposed to fill it. A lack of one must be compensated by the other, and an excess of one must be compensated for by a lack of the other. Just ignore that it makes no sense.

Part of what contributes to this assumption about us I think is that many people have no clue how to read us, and come up with these things to try to put a positive spin on the way we are, because they can’t find anything else positive about our existence, or perhaps cannot find anything to say about us even "really being in there." I’ve seen the argument about how angelic we are used as justification for not hating us, like hating us is to be expected and accepting us is some awful thing.

The rest, I’m afraid, actually may have something to do with the external appearance of a lot of developmentally disabled people. I’ve seen the assumption made most about special education students. I wonder how many people bother to wonder about whether this really is intrinsic, whether it's not actually a result of how we’re raised and taught to act.

According to a lot of the people in control over our lives, we are supposed to be passive, compliant, good, and show no negative emotion about anyone. We are told that this is the only way anyone will like us, the only way we can be and still expect anyone to be willing to be near us. We spend our lives learning to suppress things natural to us and unharmful to others to avoid the negative consequences of doing those things. We learn that simply asking for information is viewed as a sign of an “attitude problem.” We learn to apologize for anything and everything others do not approve of, regardless of whether whatever we were doing was in fact negative. We are taught that any expression of anger is punishable.

In special education PE (which, by the way, is where I saw most of the stuff from the above paragraph), I met a student whose entire life had been reduced to acting “nice” (read that “nice” as passive) so she would earn smiley-faces, and who spent a lot of time resorting to telling her aide that she’d be nice in the future, regardless of what she had done to warrant reprimanding before, regardless of whether it even deserved reprimanding. As far as I could tell, that was viewed as some sort of accomplishment.

If someone has a one-on-one aide (and I didn't, something I'm now thankful for), at least if that aide's purpose is to enforce "good behavior," the student will get away with a lot less than a student without an aide. There is no room to break the minor rules that most can break every day, because someone is always, or almost always, watching. It is not unlikely that everything they do is already pathologized. They’ll be followed by someone with training in how to subdue them, how to enforce compliance. And yes, the eventual result is often someone who looks nice on the outside. But that’s not a good thing! To assume it is requires ignoring the context we live in and have been raised in.

I can’t say exactly why others force us to be this way. I think part of it is a nasty self-perpetuating cycle, where people expect us to be passive based on stereotypes, and then, when we aren’t, force us to be.

Another part of it, I think, comes from the notion of “mental age,” and from the idea of developmentally disabled people as perpetual children. It’s more acceptable to treat us like small children up into adolescence and often adulthood than it is our non-disabled agemates. Plus, the ideas that many possess of all small children being sweet, cute, innocent, and angelic, or otherwise needing to be made that way echo the way we’re perceived.

Regardless, I'm not perfectly sweet or angelic! At this point, I think that means I've been lucky.

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.