autism (stereo)types

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Someone posted on LiveJournal about supposed “subtypes” of autism, based on various celebrities, some of whom are autistic. [Edit: I was responding apparently to a work-in-progress posted illegally. What I say below was in response to what I saw, as written, not to all the things I didn’t see and didn’t know. It would still be my response if this were the finished product, and is still my response to the many finished products that look very similar to it. See comments for details.]

This reminds me of when someone asked me a question several years back, “Are you a Temple Grandin type or a Donna Williams type?”

I’m an Amanda Baggs type. As in, I’m myself. Not Temple Grandin, not Donna Williams, and certainly not a point on a line between the two of them as if they’re another “spectrum” unto themselves. There are more than two kinds of autistic people in the world, and even if there were truth in this stuff, I doubt that the first two major autiebiographies would be written by perfect representatives of each.

I wonder how many newly-identified auties sit there trying to force-fit themselves: “Am I autistic? Or am I AS? How high-functioning am I exactly? And am I more like Temple Grandin or Donna Williams? Or more like Andy Warhol or Albert Einstein? Can I really be autistic if I don’t fit the standard descriptions of any of these?” And how many auties end up totally alienated by this stuff.

Double standards.

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Has anyone noticed something?

When people in general do something destructive, and that thing is considered a normal part of what “people” (defined as, NT, dominant culture, etc, although of course other people might do these things too) do, then people spend a lot of time and effort researching and justifying why this thing exists. For instance:

Gossip is the human equivalent of ‘social grooming’ among primates, which has been shown to stimulate production of endorphins, relieving stress and boosting the immune system. Two-thirds of all human conversation is gossip, because this ‘vocal grooming’ is essential to our social, psychological and physical well-being.

(From Evolution, Alienation, and Gossip.)

Yet when other people (including autistic people) do something that may not even be all that destructive, may serve a purpose, etc, it’s considered a symptom.  And when we do (or even are imagined to do) something destructive, it’s considered twice as bad as anything destructive that non-autistic people generally do.

Case in point:  Violence.

Violence is close to universal among humans, I don’t care what designation they’ve got.  When autistic people (or any of a number of other people) do something violent (or even just something perceived as violent), people see it as utterly horrible, “for no reason”, and a sign of something about all autistic (etc) people. When non-autistic people do things that are far more violent, often towards autistic people (for instance, school bullying, murder, etc) out come the explanations of why these sorts of things make sense in the scheme of things, or the ways in which autistic people are asking for it.

So let me get this straight.

When we do something violent (or perceived as violent), it’s because we’re doing something wrong (even if there was genuine provocation, self-defense, etc).  And when other people do something even more violent to us, it’s because we are something wrong (our very existence is provocative and needing defending against, or something…).

Second Life

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my avatar on Second Life

So my computer finally has the graphics capabilities etc. for Second Life. If anyone wants to meet me there, my avatar’s name is Alfhild Briers. It looks roughly like the image here (you can click on the link to get the real image, if you’re having trouble seeing my images). Sometimes I’m in a wheelchair there and sometimes I’m not, but as a short fat bald woman I stand out regardless.

I’m still trying to get it more realistic-looking, but that’s what I’ve got so far. The appearance settings are complicated, and trying to get eyebrows or a mouth like mine (the only unibrows they have are the stereotypical thick ones that go straight across, not the thin ones that dip down… none of their mouths are trapezoid-shaped) is difficult and involves drawing onto a flat template that’s then wrapped around a 3-d face. Laura has also recently got an avatar there, but I’ll leave it up to her whether to say who it is.

Realistic avatars are unusual there. I’ve been warned several times that there’s a bit of hostility towards them. I’ve also had a lot of people patiently explain to me that I can look like anything I want to look like on Second Life. That I could look like anything I want, and still choose to look exactly like I look in real life, is confusing to a lot of people, but it’s true. I’ve even had a few people remark that I must be afraid of looking different than I do, rather than fine looking how I do.  I get a lot of comments (some positive, some negative), and I stand out not just for the parts of me that are unusual in real life but for the parts of me that are utterly ordinary in real life. (Being five foot two, while short in real life, is tiny on Second Life for a human, and being even a normal width is wide.)

Anyway Laura and I are planning to build some stuff for autistic people there.

Five weird things

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Five weird things about me:

1. I used to climb fences and “defend our territory” against neighbor cats by using cat postures, staring them down, and, if necessary, hissing or growling. I also used to “mark my territory” the same way cats do (indoors and out), and it always got blamed on the cats.

2. I love country music (weird for my geographic region and political persuasion anyway).

3. I can climb things easily and perch precariously without falling, but if you try to get me to walk on flat ground I get confused and may bump into things or fall unless it’s totally familiar.

4. I’m on Second Life with as close to an exact replica of my offline body as possible (this is quite definitely weird for there). (Might post more about SL sometime.)

5. I can wiggle my scalp.

(I wasn’t tagged, never have been, for anything, for whatever reason.  But this has been going around the Autism Hub for awhile now, so I’m joining in, tagged or not.)

Thoughts on having been born an autie.

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I turned 26 yesterday.  I am grateful that I was born in a time before anyone could pressure my parents in myriad ways not to have me because of my genes.  By calling them irresponsible, by accusing them of bringing more suffering into the world, by telling them not to perpetuate their defective genes, by telling them horror stories, by threatening to make insurance more difficult, by overt hostility and scorn, by telling them that only the weirdo activist auties actually prefer to exist but that “real” auties live lives of constant unmitigated suffering that is surely worse than never having existed, or anything else like that.  If I have kids, I will be subjected to that pressure merely because of being autistic (in fact I’ve had people tell me I should be sterilized starting when I was a teenager, and the only doctor I dared to talk to about possible pregnancy in the future showed me a display of sheer bigotry), and if a prenatal test is developed, even non-autistic people will be subjected to that pressure.  Here’s to those who fight eugenics in all its guises.

A real conversation I had today

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Setting: At a park I take my dog to, with staff and staff’s roommate. Staff starts off way at the other end of the park. As usual, I may jumble the order of the conversation, but what was said is approximately what was said.

Stranger: Oh… does that thing…

Me: (typing something unrelated to something else)

Stranger: Oh wow, so she types into that thing and it says what she’s typing.

Me: Yep.

Stranger: Is she deaf? Can she hear me?

Me: Yes, she can.

Stranger: How old is she? I’m betting she’s about 30.
Me: (typing while the two of them talk)

Staff’s roommate: I don’t know, I’m guessing around 25.

Stranger: I’m guessing around 30.

Me: 25.

Stranger (finally addressing me): Do… you… like… coming… here?

Me: Yes.

Stranger (again to me, evidenced by the very patronizing tone): Do… you… like… when… the… dogs… are… nice… to… you?

Me: Yes.

Stranger (back to talking to staff’s roommate): Do you take her out places like this often?

Staff’s roommate (inexperienced in these kind of conversations, but still uneasy): I think it’s [staff’s name] who does that usually.

Stranger: Oh, wow, it’s so nice to see what some people will do for each other, it lets you know there’s some caring people in the world. That’s so nice of her to do something like that for those people…

(Long pause.)

Stranger: It’s amazing what technology will let people do these days.

(Long pause.)

Stranger: What’s your disability, anyway?

Me: That’s a personal question.

Stranger: Oh okay… you know we’re born perfect… and we’re lucky to make it to 25 without something wrong with us… because it only gets harder…

Me: (thinking but not saying that I’ve been disabled from birth, gritting teeth, looking for escape route)

Finally I took my dog over to a different section that this guy’s dog couldn’t go in. I learned later that he went up to my staff and started asking her all kinds of personal questions about me, including what my disability was. She asked him if he’d asked me these questions, and he said he had but that I’d said it was a personal question, and she told him that’s probably all the answer he’s going to get then.

Note, this isn’t a matter of being ashamed or not-open about being autistic (in fact if he’d been a bit more observant he’d have seen the “Autistic Liberation Front” stickers on my wheelchair) or any other thing like that. It’s about not wanting to talk to patronizing people who seem to think they’re entitled to various details of my life no matter how they have to get them (and like my opinion is worth nothing in the matter), and definitely not wanting to give them what they’re looking for.

(Will stick categories on this when back to a computer that has full web functionality.)

CCDI on Katie McCarron

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Katie McCarron by Coalition of Citizens with Disabilities in Illinois.

Sobsey suggests that the “widespread social perception that ‘altruistic homicides’ like the killing of Tracy Latimer, are the acts of heroic and loving parents who deserve praise rather than punishment can be expected to encourage more parents to kill their children.”

Sobsey’s research also sheds light on what it is exactly that causes a parent to kill a child – it has very little to do with “mercy killing.” In fact, FBI profilers and criminologists agree that “the deeper motivation for mercy killing to be a pathological need for ‘power and control.'”

Want more contributors to Getting the Truth Out

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I never intended Getting the Truth Out to just be about me. It ended up that way in part because midway through promoting it and trying to do various stuff, I ended up without consistent Internet access for a couple months. (First living on the streets for a few days then relocated to a studio apartment with no phone line and a constantly-there roommate, parrot, etc — long story, but not conducive to getting anything done online.)

I’d like other contributors as well.

The format should have a few loose elements in common with the format I used: There should be an introductory section that shows you in the most pathological light you can manage (but still realistic to your life), and then it should switch somewhere along the line to your actual political views about autism.

And your actual political views don’t have to be absolutely identical to mine, but pro-cure stuff isn’t going to be posted on that site, nor is stuff that’s hateful towards some kinds of autistic people. (If you want to talk about how wonderful HFA/AS people are and how awful LFA people are, or vice versa, find somewhere else to do it.)

If you have trouble making photographs into black and white or resizing them, I can do that for you.

Also the pathologized part should be realistic. As in, it should be stuff that really could be said about you if someone were to sit around and pick you apart as if you had a disease. I could not say, for instance, that I smear feces, because I don’t and never have (even if I’ve done other “bizarre” stuff with bodily functions, which I have), but if you do (or did) you could mention that if you wanted.

And for the pathologized part, it doesn’t have to be a portrayal of the exact same stereotype I’m portraying. One person I know is thinking of doing one that focuses a good deal on her sad lack of a social life and the fact that she’ll never marry and spends most of her time interacting with a computer. The point is to definitely portray yourself, but portray yourself in a way that’s warped by that pathological, medicalized, destructive, tragic view of autism we all know too well. (An example of a non-disabled person doing that to himself for the purposes of making a point, is here.)  And then after you’ve done that for a bit, to discuss your real viewpoints about being autistic and what that means to you.
It also doesn’t need to be as long as mine.

The format I’m planning on, is to have a page that has one picture of each person who is on the site, along with a name. (It can be a real name or a pseudonym, just let me know which.) Then a person can click on any picture they want in order to get “that person’s story”. Told at first in a pathologized and third-person way (“She,” “This person,” etc, not “I”) and then in the first person once you get past that switching point. (Again, same general structure as what I did, but different photos and different things being said.) The reason I’m asking for realism is because one of the first things people can say is “But none of that is true,” and I don’t want to give them a chance.
So if anyone’s interested, my email address is the same as:

http://ballastexistenz.autistics.org/

Take out the http:// at the beginning and the / at the end. Then turn the first . into an @ and you get my email address.

Oh, and for those who don’t know yet, Getting the Truth Out was a reaction to the site http://www.gettingthewordout.org. More of my reasoning is explained in the article Autistics Speak. (The anonymity had to be partially dropped. But the reasons for the initial anonymity are explained there, as well as much of the reasoning behind the site.) So if anyone wants to contribute, please email, it’s not supposed to just be a site with one person on it.

Joel’s site move, and his “Autistic Professionals” post.

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Joel’s website and blog have both moved.

His website is now http://www.thiswayoflife.org/

His blog is not http://www.thiswayoflife.org/blog/

I haven’t updated my links yet, but people should. Particularly a lot of people have linked to this page:

http://www.thiswayoflife.org/murder.html

The old Geocities site will not be updated so it’s important to update that link. (Again, not that I’ve got around to it yet.)

His current blog post, You Can be Autistic or a Professional, but Not Both also interests me. It’s about how when autistic people are professionals, non-autistic people in autism circles are more likely to view auties as just “talking from their own personal experience” and discounting any particular expertise they actually had to learn.

That’s a lot like what happens to Michelle Dawson. Never mind that she’s an autism researcher with an interest in ethics, people still think she’s speaking only from personal experience as an autistic person, and still try to paint the issue in terms of what kind of autistic person she is (or is not).

And while I’m not a professional, I do have a particular interest in certain areas of ethics, politics, and history. I’ve known a few autistic people very well, and a lot of autistic people at least a little. I’ve read any book that I can get my hands on by an autistic person. I’ve known autistic people from all over the so-called spectrum in any number of settings. I’ve participated in advocacy efforts within the disability rights movement, the psychiatric survivor/ex-patient movement, and the autistic community. While I’m not officially recognized for any of this, it accumulates into a wide-ranging bunch of knowledge that sits in the back of my head and informs everything I do.

Yet when I talk about autism or disability rights in general, people quickly reduce everything I’m saying to a product of my own experience and only my own experience. They brush aside and ignore all that other experience and the wide variety of worldviews I’ve been exposed to, and assume that every ethical discussion I get into is rooted in my experience and mine alone, or even my real or imagined neurotype in the so-called spectrum and mine alone, rather than my opinions having any merit for other reasons.

So it’s not just professionals we don’t get to be. It’s anything that acknowledges our ability to gain significant knowledge from outside our own experiences. And people say we are the ones who can’t take others’ perspectives.

Myth-Debunking, and an additional myth

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Standard Disclaimers and Personal Myth-Debunking Reference

That’s a post by Zilari that everyone should read. Laurentius Rex also wrote a Larry Arnold Myth and Reality post recently. I’ve wanted to write a post like that for awhile, but the reality is often far longer and harder to write about than the myth, so I’ve steered clear of it.

One myth that I haven’t seen mentioned on either of those posts, though, is one that’s still hard for me to wrap words around. Something like: The myth of the autistic person as having priest-like powers to absolve parents of real or perceived sin.

Years ago, I was talking to a mother of an autistic kid. She seemed to have some desire to get me to pronounce things she was doing okay, as if me saying they were okay would make them okay. She talked about how she stared at her son sometimes and wondered what things would be like if he’d been normal. And she talked about wondering and wondering and wondering if it was the vaccines. And she seemed to not be satisfied in telling me this until I said something along the lines of “Yeah, those things are understandable.”

Later, I’ve had people throw things they’ve done in my face, weapon-like. Another parent who had institutionalized their child told me all about what a wonderful and caring parent they were, and what a wonderful and caring institution their child was in. They really seemed to want some kind of acknowledgement that institutions were really okay. When I didn’t give it to them (and told them I was not going to continue the conversation), they wrote several times a day with increasing amounts of detail about what a loving person they were and how I had grievously attacked them even if I looked innocent. The accusatory posts (ones in which many false and negative things were said about me) came so many times a day that I had to stop reading the forum until the person either left or got banned (I can’t remember which).

That’s an extreme example. Most people don’t become quite so overtly hostile. But many people do seem to look to autistic people to reassure them that what they are doing or have done is okay. And often go to greath lengths to justify to any autistic person they meet that whatever program they do or don’t have their child on is really okay and really useful in this child’s case (whether or not it actually is).

The reality of the myth is that neither I nor any other autistic person I know has the power to make things right that are not right, or to convince a person that they are doing the right thing if their conscience keeps bugging them. If we do provide such reassurance, it won’t make it real, it won’t make certain things right. Those things are between a person and whatever it is in their life that they attribute a sense of ethical behavior to.

An autistic person’s reassurance won’t make anything better. What it will do, though, is possibly make a person feel better for a time about whatever they are doing, whether what they’re doing is right or wrong or some combination of the two. It will also lend some kind of credence to what is going on — “See, an autistic person approves of it, therefore it must be okay.” And it can even be used against other autistic people: “See, this autistic person approves. He’s a nice autistic person who is truly interested in the welfare of other autistic people. The rest of you who don’t approve? You’re just cold, heartless people who don’t understand the real situation.” One thing it doesn’t do is automatically make something okay. Any so-called “treatment” for autism can acquire at least one autistic person backing it. It doesn’t make them, or the mindset behind them, correct.

So, to anyone who comes to me (possibly to any other autistic person, but for all I know some don’t care) and tries to justify everything they’ve ever done to their child, in the hope that I’ll tell them, “Yes, that’s really a good thing” (and I’ve known people who are explicitly doing that, so if you’re truly not doing that, I’m not talking about you, but if you are doing that and want to think you’re not, go detangle your head or something) you’d be better off just trying to figure out right and wrong. I’m tired of being put into situations where the only acceptable or compassionate answer is considered to be “You’re right, you’ve done nothing wrong, you need to change nothing.”

When people interested in the rights of rabbits tell me that keeping rabbits in hutches with no stimulation grievously harms the rabbit, I do not tell them, “I put my rabbit in a hutch before. And that was right for my rabbit. Please tell me that was okay. I’m a good person. Really. I petted my rabbit. I fed my rabbit and gave him water every day. I’m not a monster. I didn’t do anything wrong. I loved my rabbit. And I was only a kid. Don’t hold it against me.”

Most, in fact, understand the concept of having done something wrong and knowing it was wrong and changing what you’re doing. But I doubt they’d have the patience for someone trying to prove that what’s really a form of animal cruelty is right, even if it’s genuinely true that for a long time I didn’t know any better. If I were sitting there trying to justify it to myself by justifying it to the House Rabbit Society, I’m sure the HRS would eventually just want me to go away, and they certainly would not sit there and tell me that my attitude was understandable and that I was clearly a loving person so what I did didn’t harm that rabbit after all. If I showed remorse, most of them would accept me and even work alongside me, but I doubt they’d want to accept what I’d done, and I wouldn’t want them to, fear of being wrong gets in the way of doing what’s right (and is also, in the form I’m talking about, just plain self-centered, always directing things back to “Am I a good person?” and making everyone around the person get into the role of reassuring them and taking care of their feelings).

But in the autism community, one role given to autistic people is to absolve parents of any guilt they feel about their attitudes and practices. And that’s not something we have the power to do. Even if we pretended to have that power, it would be hollow. We can’t do that for you. That’s the sort of thing parents have to work out (and really work out, not just come up with a long string of rationalizations glued together by prejudices and misconceptions or something) for themselves. Nobody — not autistic people, not other parents — can do that for them, any more than a person telling me that my prior attitude to rabbits was okay, could do that for me.