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They do not know how hard it is. They do not care. They want me to change. They want to put things in my head, to change my brain. They would say they don’t, but they do.
I thought I was safe, living independently, living like anyone else. But I wasn’t.
Under the pillows, I’m starting to shake again. I don’t want to cry; crying might be too loud and my neighbors might notice. I am hearing the labels crowding in on me, the labels they put in my record when I was a child. Primary diagnosis Autistic Spectrum Disorder/autism. Sensory integration deficit. Auditory processing deficit. Visual processing deficit. Tactile defensiveness.
I hate the labels; they make me feel sticky, where they are stuck to me with professional glue I can’t pry off.
All babies are born autistic, one of our group said once. We laughed nervously. We agreed, but it was dangerous to say so.
It takes a neurologically normal infant years to learn to integrate the incoming sensory data into a coherent concept of the world. While it took me much longer — and I readily admit that my sensory processing is not normal even now — I went at the task much the same way as any other infant. First flooded by ungated, unedited sensory input, protecting myself from sensory overload with sleep and inattention.
You might think, reading the literature, that only neurologically damaged children do this, but in fact all infants control their exposure — by closing their eyes, averting their gaze, or simply falling asleep when the world is too much. Over time, as they make sense of this data chunk and then that, they learn what patterns of retinal excitation signal what events in the visible world, what patterns of auditory excitation signal a human voice — and then a human voice speaking their native tongue.
For me — for any autistic individual — this took much longer. My parents explained it to me, when I was old enough to understand: for some reason, my infant nerves needed a stimulus to persist longer before it would bridge the gap. They — and I — were lucky that techniques were available to provide my neurons this needed duration of signal. Instead of being labeled with an “attention deficit” (which used to be quite common), I was simply given stimuli to which I could attend.
I can remember the time before I was exposed to the computer-assisted primary language-learning program… when the sounds that came from people’s mouths seemed as random — no, more random — than a cow mooing and moaning in the field. I couldn’t hear many consonants — they didn’t last long enough. Therapy helped — a computer stretched the sounds out until I could hear them, and gradually my brain learned to capture briefer signals. But not all of them. To this day, a fast-talking speaker can lose me, no matter how I concentrate.
It used to be much worse. Before the computer-assisted language-learning programs, children like me might never learn language at all. Back in the mid-twentieth century, therapists thought autism was a mental illness, like schizophrenia. My mother had read a book by a woman who had been told she had made her child crazy. The idea that autistic people are, or become, mentally ill persisted right through the end of the twentieth century, and I even saw an article about that in a magazine a few years ago. That is why I have to visit Dr. Fornum, so that she can be sure I am not developing a mental illness.
I wonder if Mr. Crenshaw thinks I am crazy. Is that why his face gets shiny when he talks to me? Is he frightened? I don’t think Mr. Aldrin is frightened of me — of any of us. He talks to us as if we were real. But Mr. Crenshaw talks to me as if I were a stubborn animal, one he had a right to train. I am often scared, but now, after the rest under the pillows, I am not.
What I wish is that I could go out and look up at the stars. My parents took me camping in the Southwest; I remember lying there and seeing all the beautiful patterns, patterns that went on and on forever. I would like to see the stars again. They made me feel calm when I was a child; they showed me an ordered universe, a patterned universe, in which I could be a small part of a large pattern. When my parents told me how long the light had traveled to reach my eyes — hundreds, thousands, of years — I felt comforted though I could not say why.
I ca
Sometimes I used to go out in the country and try to find a spot to look at the stars. It is hard. If I park on a country road and turn off the lights of the car, someone could run into me because he can’t see me. I have tried parking beside the road or in some unused lane that leads to a barn, but someone who lives nearby may notice and call the police. Then the police will come and want to know why I’m parked there late at night. They do not understand wanting to see the stars. They say that is just an excuse. I don’t do this anymore. Instead, I try to save up enough money that I can take my vacations where there are stars.
It’s fu
That didn’t happen to me, but sometimes I’ve been stopped for no reason I can understand, like with the security man at the airport. I get very scared when someone speaks harshly to me and sometimes I have trouble answering. I practiced saying, “My name is Lou Arrendale; I am autistic; I have trouble answering questions,” in front of a mirror until I could say it no matter how scared I am. My voice sounds harsh and strained when I do it. They ask, “Do you have identification?” I know I’m supposed to say, “In my pocket.” If I try to get my own wallet out, they may be scared enough to kill me. Miss Sevier in high school told us the police think we have knives or guns in our pockets and that they have killed people who were just trying to get out their IDs.
I think that is wrong, but I read where the court decided it was all right if the police were really scared. Yet if anybody else is really scared of the police it’s not all right for the scared person to kill a policeman.
This does not make sense. There is no symmetry.
The policeman who visited our class in high school said the police were there to help us and that only people who had done wrong would be scared of them. Jen Brouchard said what I was thinking, that it was hard not to be scared of people who yelled at you and threatened you and could make you lie facedown on the ground. That even if you hadn’t done anything, having a big man waving a gun at you would scare anyone. The policeman got red in the face and said that attitude didn’t help. Neither did his, I thought, but I knew better than to say so.
Yet the policeman who lives in our building has always been pleasant to me. His name is Daniel Bryce, but he says to call him Da