as small as a world and as large as alone, I remember a while ago you had a buzz cut because...

9:19pm March 29, 2015

chaoticidealism asked: I remember a while ago you had a buzz cut because it helped you not to pull your hair out. But now you have long, thick hair. I'm wondering--did it work? Did you learn to not pull your hair out, or is it just so thick anyway that it doesn't matter? I have tendencies toward trich myself and I find that having really short hair helps quite a bit, as I can't get a grip on it, nor does it brush against my skin and bother me. So--why the hairstyle change?

Lots of reasons for the hairstyle change. I never had trich (I have dermatilomania, a related condition where you pick your skin), I just had a tendency to yank clumps of hair out when frustrated, anxious, or angry. I don’t do that much anymore. Also, I started feeling like I couldn’t recognize myself with a shaved head, prosopagnosia stuff. But I have a lot more self-control than I had ten years ago. Less self-injury, less violence, etc. I even gave a couple talks at Autreat and AutCom on how to avoid self-injury, at least the ways I had learned from family and friends.

Also, on the website in question, I was writing about things people said about me, not just things that actually happened – in fact that’s what the entire first section was about, other people’s perceptions of me, and the second half was closer to how I perceived myself. Sometimes those things matched up, sometimes they didn’t.

In the case of the hair… I was 14 or 15 when psych nurses and psych techs would say, “We really ought to cut off that hair off so she can’t yank it out like that.” When I did cut al my hair off, there were a huge number of reasons, and that reason was far from the top reason. One of the biggest reasons was a health crash that left me with no energy to comb my hair.

Remember, that site was a parody of an Autism Society of America site. I was trying to show how if you spun the facts of a person’s life, you could make their life look unbearably awful. So if you combined the fact that I shaved my head (true) with the fact that I pulled my hair out (true), you could make it look like the only reason I shaved my head was because otherwise I’d yank my hair out (half-truth). Which is exactly how all woe-is-me autism propaganda works – they combine real truths to make very ugly half-truths, to make people feel sorry for the autistic person and especially sorry for our parents.

I had originally intended it to have five or six people, each with real facts about our lives spun into propaganda about how sucky our lives were. People who were regarded as HFA, LFA, AS, PDDNOS, and everything in between. Unfortunately I didn’t have any takers. It was never meant to be all about me, and it was never meant to be an accurate representation of my life. Each idea in it was supposed to either be something real or something someone had said about me at one point, blended together into a sort of propaganda-like sculpture about me (and about any autistic person, because there’s not a single one of us on the spectrum that you can’t do this to).

Hope that makes more sense. I was told, at the time, that a lot of people would misunderstand my intent, but at the time I had no idea how far the misunderstandings would go. I’m told I should’ve known, but not knowing… I’ve talked about having huge gaps in my knowledge socially and otherwise. This was one of those gaps, the kind I’m supposedly too smart to have.

Again, I hope this makes sense. That website spawned a whole lot of misconceptions about me and my intentions, and at the time I was too intimidated to contradict anyone too forcefully. (I was also very, very sick with a combination of myasthenia and adrenal insufficiency, and trying hard not to show any of that for fear of showing weakness around people who were making death threats on a daily basis.

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