7:52pm December 23, 2011

This explains a lot.

So… I collect books by autistic people. I started over a decade ago when I wanted to feel less alone. Then I started doing it because I wanted to make a big indexed catalog of them by all kinds of subjects in them. These days I do it mostly for the sake of collecting them and organizing them, even when I don’t want to read them.

My reactions to them (when I do read them) have changed over the years too. After reading a ton of them that are like clones of each other or like various websites, nearly all displaying only the aspects of autism that are acceptable in that particular day and age (and to hell with all other aspects of the person)… instead of looking at all the potential ramifications of whatever they say in them, I’ve started mostly liking them if they’re original or interesting. So keep that in mind when I talk about this.

I just read one called Atypical. I forget the author’s name. And the guy sounded so much like my brother in a lot of ways that when I saw his picture at the back it shocked me. Because I’d been unconsciously picturing my brother the whole time and this guy looked nothing like him. Also keep in mind, other than both being autistic my brother and I are almost total opposites and can barely understand each other. So hearing some similar things from this guy’s point of view made some things finally make sense.

The biggest one though was his reactions to me when my movement disorder started becoming much more prominent. Some of them were truly awful, others just annoying, but I think I understand them now.

So basically what happened was I’d sometimes slow down or freeze altogether, or become unable to speak, or unable to respond, or some combination of these things. And shutdowns of various sorts became more common and more severe.

One of the first times this stuff happened in front of him, he led me outdoors, sat me down on a flight of stairs, locked me out of his apartment, and told me I could not come indoors again until I quit looking for attention. This would have been just annoying but this was a place where we witnessed violent fights literally on the front lawn.

So every time he opened the door I would try to walk back inside. And he’d see that I was still walking too slowly, and say “oh no you don’t” and lead me back to the stairs. Later on, I heard him tell the story to someone else and he said “And I’d open the door and she’d try to come back in, wanting attention…” (As if I had no other reason for wanting to be indoors at night as a 12-year-old kid sitting a couple yards away from where we’d seen some awful fights, while unable to defend myself.)

Another time he sat me down for an earnest conversation. He begged me to tell him that I was just pulling a stupid stunt for attention. He told me he had done some incredibly stupid stuff for attention so he wouldn’t judge me. I couldn’t respond in any way at that moment and that didn’t help matters.

(It was after he tried stuff like this for ages and none of it worked that he demanded my parents get me checked out by a neurologist.)

This stuff puzzled me at best given how averse I could get to the kind of attention people gave me for things like this. Like kids at school who jumped up and down on me when I froze to see if they could get a response. I figured I could do with a lot less attention, yet my brother seemed to always assume I wanted more and did all kinds of amateur behavior mod stuff to try to get me to stop having a neurological condition. Even when he told my parents to get me seen by a doctor, he did so in a way that was absurdly angry at me.

But after reading this book I think I understand why he made the assumptions he did, even though he really shouldn’t have. Because the guy this book is about… wow.

He talks about deliberately selecting the acoustics of where to fart so it would sound the loudest and reverberate off the walls. And then pretending to look ashamed while secretly loving every minute of seeing everyone’s eyes on him, watching them run away, and hearing them make comments about how nasty it was. He talks about getting a boner in class, hearing people start to point and whisper, and leaning back so that everyone could see it while basking in the glow of their attention.

Nobody ever explained to me before that people actually do stuff like this and enjoy it. And reading this book, I remember digging through a box of papers and running across a citation my brother got at a movie theater job for running around with a popcorn box on his head. And now I understand why he assumed I had similar motivations.

Even though I still think failing to report obvious neurological symptoms to anyone for a period of months (or was it over a year?) was grossly irresponsible. What if it had been a series of strokes rather than a very slow-progressing condition and a mild seizure disorder? Of course the school never said anything to my parents either. Even the time I froze solid with fixed, dilated eyes staring straight into a bright light for a good 10-15 minutes during a field trip. (The more unfamiliar the situation, the more these problems showed up, a pattern I didn’t pick up on for a long time.) They just started acting like I’d done something horribly shameful and everyone including the teachers refused to even look in my direction the entire duration of the rest of the field trip.

This guy apparently does speeches at schools and stuff and loves the attention he gets for that, too. He kind of assumes that all other autistic people share this motivation with him… sort of like my brother always assumed I did that kind of stuff too.

I can’t (as in literally can’t) say a lot else about the book. But it at least made a really puzzling chapter in my life make much more sense. Unfortunately, the assumptions being made fucked with my head really badly for another decade and a half, regardless of where they came from. But it’s still good to know it was him and not me.

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