12:50am July 16, 2013

I hate medical journals.

I don’t feel right.

I just skimmed about forty articles on autism, from medical journals. Some of them were very positive about autism. I still don’t feel right.

I’m sitting here nuzzling a purring cat, and struggling to feel right again.

I feel like there’s this big shell around me. It’s made up of ideas. Other people’s ideas, about who I’m supposed to be.

Noncompliance catatonia negativism stereotypy deficits echolalia peaks of ability motor planning enhanced perceptual functioning savant skills hyperlexia atypical neural connectivity sensory integration posturatl hypo-reactivity de novo mutation co-morbidity broader phenotype psychosocial outcomes intellectual functioning developmental regression epidemiology receptive language developmental delay repetitive behavior sensory adversities

JUST STOP STOP STOP STOP STOP.

All these words make me feel like I’m on a microscope slide. And I feel like my brain can’t feel its legs. Its connection to the real world. Everything is line drawings and outlines. And words. There’s no texture or color or three dimensions to anything. I can’t feel anything. It’s all balloons made out of wire frames.

And it’s me that these words affect most. They make it hard to feel who I am underneath all this psychobabble. Like I’ve been hollowed out and replaced with words. Someone else’s words, reflecting incorrect guesses about who I might be, who people like me are, what we are like.

It’s no wonder people treat us add empty shells filled with incomprehensible behaviors that never happen for normal human reasons. It’s no wonder that if they do notice us doing anything for a reason they can understand, they start questioning whether we are autistic. Because as I’ve always feared, to them we are like machines, automatons, that go through life making mechanical motions for bizarre, mechanical reasons. And everything in here just confirms that. Even the studies I’m supposed to like are forced to use similar language.

I feel like I can’t fight my way outside of the line drawing or the robot. Like they are encasing me. No matter what I do that’s all people will see.

This is why, when I ran away from home and was incapable of describing what I was doing, everyone rapidly decided that I was wandering. Wandering is something only empty shells do. We do it because we don’t understand any of our surrounding environment, and have no particular thoughts or feelings or, especially, motivations. Everything we do is a result of confusion, disorientation, or the completely incomprehensible motives that only empty shells and automatons have. My inability to respond to anyone in typical ways, and my expressions of overload, shutdown, and language problems (resulting in either no explanation, or completely nonsensical explanations), only made things worse for me.

Even in recent years I haven’t been able to safely leave the house alone. People call the police to report someone wandering. The police don’t listen to a word I say, if I can say anything. Instead they try to figure me out on their own terms: what institution I came from, how and why I am wandering around loose, whether I am male or female. If they manage to figure out where I live and take me there, they are disinclined to leave me there without someone else present to supervise me. They never believe I live alone. If I’m very unlucky, confrontations turn violent and scary, them approaching me from behind with no warning, me reacting like anyone would when faced from behind, them glad of a reason to take me down and handcuff me, sometimes deliberately falling to lock the cuffs, so that they tighten painfully around my wrists and pinch nerves. I strongly suspect that being white has saved my life. But only just.

Last time I went outside on my own, it was 2005. I was sitting on the sidewalk outside my apartment building, waiting for staff to arrive. First, a variety of people walked by me, each asking if I was okay. If I was sure I was really okay.

One of them must’ve called the cops because a police car arrived. They started questioning me about who I was and where I lived. They wanted to see ID, which I didn’t have. They were skeptical of all of my answers, and hostile. Then a second car arrived. The cop was someone who knew me, I had given him a copy of Dennis Debbaut’s book on autism and police. Just as he was explaining things to the first cop, my staff drove up, confused and alarmed about the cops being there. Only her explanation finally calmed down the cop, and he let me go. My keeper had arrived. My keepers are always more trustworthy than me, because I’m just an automaton. And I got lucky that time, things have gone much worse for me in the past. Even so, that was the event that made me quit going outside alone. If I couldn’t get away with sitting outside my apartment, I obviously couldn’t get away with being outside at all.

All these things and more were swirling through my head earlier today, after skimming through those journal articles on autism. There is no pleasant way to experience being dissected and placed on a microscope slide.

I remember a horrible conversation with an autistic man who demanded that I prove my experiences with autism were consistent with any journal articles, or else he wouldn’t believe they had happened. There are actually plenty of journal articles abit those experiences, but that isn’t the point. He referred to me as a “case”. When I compared my experiences to those of an autistic woman he knows, he told me that I “present” differently than her. I didn’t yet have the self-respect to tell him to fuck off. And I felt like he was trying to perform a vivisection on me. Like I was being ripped apart. There is extreme violence in this way of looking at disabled people. Yet we are so used to this that many of us never think to object.

Luckily, I feel better now than I did when I read the journal articles. I’m in more physical pain than I was before. But the feeling of being encased in a robot body or a line drawing of “the autistic specimen” has stopped.

I’m connected to my body now. I’m connected to the world around me. I can feel my body again. I can feel those sensory patterns that tell me more about the world around me than any specimen-collector writing articles in journals can ever perceive.

I’m going to try to sleep now. But I had to write this first. Nobody ever writes what this feels like. They talk about ‘medicalization’, or 'dehumanization’, or 'perpetuating stereotypes’, but their words are just as dry, abstract, and academic as the journals I’ve been reading. They don’t even begin to convey the experience of what it means to see writing that reduces you to a dissected specimen, or naked pictures of scared or confused looking kids who look just like you, sometimes with black bars over their eyes. It’s hard to find the words that describe the experience. But worthwhile to try, rather than just repeating the current academic-inspired SJ jargon and thinking that is much different in describing the effects of oppression than these journals are in describing what makes disabled people tick.