5:14am April 30, 2013

That autism survey.

1. Are you autistic?

Yes.

2. Do you know autistic people socially?

Yes. Both in person and online. Lots and lots and lots. More than most people seem to. With varying degrees of closeness from the most intimate (but not sexual) relationship I’ve ever had, to passi g acquaintances, they would number in the hundreds. Although I’m only capable of maintaining a tiny number of active friendships at once. I will forget about my closest friends if I have to be social with more than one or two other people. It’s not a moral failing, it’s just the way I work. I’ve gotten better at it, it used to be only one active friendship at once. But it’s a struggle. My friends have to be able to tolerate me forgetting them by accident. Fortunately many of my friends are the same way.

3. When did you get your diagnosis (if diagnosed)?

Summer 1995. Had my diagnosis changed to other things and back again since then, but that was my first autism diagnosis.

4. What is your genetic gender. Remember, this is optional. You don’t have to answer if you don’t want to.

I don’t know. Nobody knows that for absolutely sure, unless they’ve had their genes tested. But assumed female.

5. What gender identity do you identify as?

I don’t have one.

6. What sexual orientation label, if any, do you apply to yourself?

Lesbian. I know, supposedly doesn’t fit with the lack of gender identity. But I have a hard time with words, and this one gets the idea across the best.

7. Have you ever experienced depression that was not linked directly to autism?

Yes. From age about seven to my mid twenties. I’m 32 now.

8. Have you ever had a meltdown in a public place that was almost entirely or entirely populated by strangers?

Yes. Many times. Even got hauled off by the cops for it before. (Also Ben hauled off merely for existing in public. Yay.)

9. Did you ever attend a school for children with mental conditions (that is, in lieu of going to a more traditional school)?

Yes. From ages end-of-14 to end-of-17, I went to either no school at all, schools that existed within institutions, or else a special ed school for kids with psych and developmental disabilities.

10. Do you parents or grandparents have any mental conditions (not including Alzheimer’s, Parkinson’s or the like unless they were early-onset)?

Both parents, both brothers, at least two or three grandparents if not all of them, and a huge number of other relatives.

11. What is your favourite food?

The vegetarian combination platter, served on injera, at an Ethiopian restaurant called Shebele, in downtown Campbell, California. I’m now on a feeding tube and the restaurant is closed, so I will likely never have it again. But I loved it so much that when I went to community college, I used to save my lunch money all week long just to go there every Friday and order it.

12. What is your favourite season?

Fall.

13. What are your special interests and when did you pick them up as special interests?

I see special interests as possible to be either conceptual, sensory, or both. I have a wide variety of sensory special interests. Too many to list. Things like tiger’s eye and other stones, for both texture and visual appeal.

I have things that cross over to both. Like cats, and redwoods, both of which I picked up in infancy probably as sensory and social, and that later also turned conceptual as the conceptual parts of my brain developed.

I couldn’t list every special interest I’ve had in my life because they often change every few years. And there aren’t even words for some of the most important ones.

Autism is a conceptual special interest I picked up in young adulthood, late adolescence, as I was discovering what it really meant to be autistic. I maintain a large (100+) collection of books by autistic people, at first because I was lonely and curious about the variety in the autistic experience, later because collecting became a habit. I’m particularly focused on autism as experienced by hundreds of different autistic people I’ve known and read stuff by, rather than autism as described by professionals, which holds much less interest. Because I think what we experience is far more valuable and accurate information.

I’ve worked with autism researchers to help create assistive technology for autistic people, to research topics of importance to autistic people, and to teach them how to uncover potentially unexpected truths about our real experiences and abilities, that defy stereotypes and current theories of autism. I’m considered useful specifically because I have such a large breadth and depth of information about autism as experienced by a wide variety of real autistic people, and I don’t, unlike most researchers, filter out every piece of information from our direct experiences that happens to contradict supposedly common knowledge about autism.

I also have a strong interest in something that doesn’t have a word. Or at least, I don’t like most of the words people usually use for it. Ethics, maybe. But not as a field of academic study. More like trying my hardest to change the world in positive ways. The same kind of ethics Cal Montgomery means when she says, “I read Dave Hingsburger as an ethicist. Not an ivory-tower Ivy League ethicist, mind you, but rather one who worries how to live well amid the blood, the shit, and the chains that surround him. Instead of offering moral axioms from some fake-objective standpoint and then applying them to whitewashed situations, he acknowledges the ways in which the commitments he has made and the messy situations in which he finds himself shape his moral development and his moral outlook.” I’ve always had tendencies in that direction but each year they get more intense. People try to pin me down as doing these things “about autism” but that’s not how I see myself. At all.

I have a strong interest in comprehension and communication that can take place outside of both conventional language and conventional body language. And in ways of perceiving the world that are nonstandard in that way.

Other things too I’m sure. But my arm is starting to hurt from typing.

14. Have you ever collected something, such as stamps, coins, ticket stubs etc?

I had a coin collection and a bottle cap collection as a kid. Now I collect books by autistic people. My collection is huge and includes some rare ones.

15. What is the longest time you have ever spent on the Internet, and what were you doing in that time?

Probably days, doing random stuff.

Notes: