When I look at the clock, it is long after midnight. Bed. I must sleep. I turn everything off, set the alarm, and go to bed. In my mind, photons chase darkness but never catch up.
AT WORK THE NEXT MORNING, WE ALL STAND IN THE HALL, NOT quite meeting one anothers’ eyes. Everybody knows.
“I think it’s a fake,” Linda says. “It can’t possibly work.”
“But if it does,” Cameron says. “If it does, we can be normal.”
“I don’t want to be normal,” Linda says. “I am who I am. I’m happy.” She does not look happy. She looks fierce and determined.
“Me, too,” Dale says. “What if it works for monkeys—what does that mean? They’re not people; they’re simpler than we are. Monkeys don’t talk.” His eyelid twitches more than usual.
“We already communicate better than monkeys,” Linda says.
When we are together like this, just us, we can talk better than any other time. We laugh about that, about how normal people must be putting out a field that inhibits our abilities. We know that’s not true, and we know the others would think we were paranoid if we told that joke around them. They would think we were crazy in a bad way; they would not understand that it is a joke. When we do not recognize a joke, they say it is because we are literal-minded, but we know that we cannot say that about them.
“I would like to not have to see a psychiatrist every quarter,” Cameron says.
I think of not having to see Dr. Fornum. I would be much happier if I did not have to see Dr. Fornum. Would she be happy not to have to see me?
“Lou, what about you?” Linda asks. “You’re already living partly in their world.”
We all are, by working here, by living independently. But Linda doesn’t like doing anything with people who are not autistic, and she has said before she thinks I shouldn’t hang around with Tom and Lucia’s fencing group or the people at my church. If she knew how I really felt about Marjory she would say mean things.
“I get along… I don’t see why change.” I hear my voice, harsher than usual and wish it didn’t do that when I get upset. I’m not angry; I don’t want to sound angry.
“See?” Linda looks at Cameron, who looks away.
“I need to work,” I say, and head for my office, where I turn on the little fan and watch the twinkles of light. I need to bounce, but I don’t want to go in the gym, in case Mr. Crenshaw comes in. I feel like something is squeezing me. It is hard to get into the problem I’m working on.
I wonder what it would be like to be normal. I made myself quit thinking about that when I left school. When it comes up, I push the thought away. But now… what would it be like to not be worried that people think I’m crazy when I stutter or when I can’t answer at all and have to write on my little pad? What would it be like to not carry that card in my pocket? To be able to see and hear everywhere? To know what people are thinking just by looking at their faces?
The block of symbols I’m working on suddenly looks densely meaningless, as meaningless as voices used to sound.
Is that it? Is this why normal people don’t do the kind of work we do? Do I have to choose between this work I know how to do, this work I’m good at, and being normal? I look around the office. The spin spirals suddenly annoy me. All they do is turn around, the same pattern, over and over and over. I reach to turn the fan off. If this is normal, I don’t like it.
The symbols come alive again, rich with meaning, and I dive into them, submerging my mind in them so I don’t have to see the sky overhead.
When I emerge again, it is past lunchtime. I have a headache from sitting too long in one place and not eating lunch. I get up, walk around my office, trying not to think about what Lars told me. I can’t help it. I am not hungry, but I know I should eat. I go to the kitchenette in our building and get my plastic box from the refrigerator. None of us like the smell of the plastic, but it does keep our food separate, so that I don’t have to smell Linda’s tuna fish sandwich and she doesn’t have to smell my jerky and fruit.
I eat an apple and a few grapes, then nibble on the jerky. My stomach feels unsettled; I think about going into the gym, but when I check, Linda and Chuy are in there. Linda is bouncing high, her face set in a scowl; Chuy is sitting on the floor, watching colored streamers blow from the fan. Linda catches sight of me and turns around on the trampoline. She does not want to talk. I do not want to talk, either.
The afternoon seems to last forever. I leave right on time, striding out to my car in its spot. The music is all wrong, loud and pounding in my head. When I open the door of my car, superheated air puffs out. I stand by the car, wishing for autumn and cooler weather. I see the others come out, all showing tension in one way or another, and avoid their gaze. No one speaks. We get in our cars; I leave first because I came out first.
It is hard to drive safely in the hot afternoon, with the wrong music in my head. Light flashes off windshields, bumpers, trim; there are too many flashing lights. By the time I get home, my head hurts and I’m shaking. I take the pillows off my couch into the bedroom, closing all the shades tightly and then the door. I lie down, piling the pillows on top of me, then turn off the light.
This is something else I never tell Dr. Fornum about. She would make notes in my record about this; I know it. As I lie there in the dark, the gentle, soft pressure gradually eases my tension, and the wrong music in my mind empties out. I float in a soft, dark silence… at rest, at peace, uninvaded by the fast-moving photons.
Eventually I am ready to think and feel again. I am sad. I am not supposed to be sad. I tell myself what Dr. Fornum would tell me. I am healthy. I have a job that pays pretty well. I have a place to live and clothes to wear. I have a rare high-status permit for a private automobile so that I do not have to ride with anyone else or take the noisy, crowded public transit. I am lucky.
I am sad anyway. I try so hard, and it is still not working. I wear the same clothes as the others. I say the same words at the same times: good morning, hi, how are you, I’m fine, good night, please, thank you, you’re welcome, no thank you, not right now. I obey the traffic laws; I obey the rules. I have ordinary furniture in my apartment, and I play my unusual music very softly or use headphones. But it is not enough. Even as hard as I try, the real people still want me to change, to be like them.
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 cannot see the stars from here. The safety lights in the parking lot next to our building are sodium vapor lights emitting a pinkish yellow light. They make the air seem fuzzy, and the stars can’t show through the blurry black lid of sky. Only the moon and a few bright stars and planets show at all.
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 funny about the police. Some of us have more trouble than others. Jorge, who grew up in San Antonio, told me if you are anything but rich, white, and normal they think you are a criminal. He had been stopped many times when he was growing up; he didn’t learn to talk until he was twelve and even then couldn’t talk very well. They always thought he was drunk or on drugs, he said. Even when he wore a bracelet that explained who he was and that he couldn’t talk, they’d wait until they’d taken him to the station to look at it. Then they’d try to find a parent to take him home, rather than taking him back across town themselves. Both his parents worked, so he usually had to sit there for three or four hours.
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 Danny. He says good morning and good evening when he sees me, and I say good morning and good evening. He complimented me on how clean I keep my car. We both helped Miss Watson move when she had to go to Assisted Living; we each had one end of her coffee table carrying it downstairs. He offered to be the one to go backward. He doesn’t yell at anyone that I know of. I do not know what he thinks about me, except that he likes it that my car is clean. I do not know if he knows that I am autistic. I try not to be scared of him, because I have not done anything wrong, but I am, a little.
I would like to ask him if he thinks people are scared of him, but I do not want to make him angry. I do not want him to think I am doing something wrong, because I am still scared a little.
I tried watching some police shows on TV, but that scared me again. The police seemed tired and angry all the time, and the shows make it seem that this is all right. I am not supposed to act angry even when I am angry, but they can.
Yet I do not like to be judged by what others like me do, and I do not want to be unfair to Danny Bryce. He smiles at me, and I smile back. He says good morning and I say good morning back. I try to pretend that the gun he carries is a toy, so that I do not sweat too much when I am around him and make him think I am guilty of something I did not do.
Under the blankets and pillows, I am sweaty now as well as calm. I crawl out, replace the pillows, and take a shower. It is important not to smell bad. People who smell bad make other people angry or scared. I do not like the smell of the soap I use—it is an artificial scent, too strong—but I know it is an acceptable smell to other people.
It is late, after nine, when I get out of the shower and dress again. Usually I watch Cobalt 457 on Thursdays, but it is too late for that now. I am hungry; I put water on to boil and then drop some noodles into it.
The phone rings. I jump; no matter which of the choice of ringers I use, the phone always surprises me, and I always jump when I am surprised.
It is Mr. Aldrin. My throat tightens; I cannot speak for a long moment, but he does not go on talking. He waits. He understands.
I do not understand. He belongs at the office; he is part of the office cast. He has never called me at home before. Now he wants to meet with me. I feel trapped. He is my boss. He can tell me what to do, but only at work. It feels wrong to hear his voice on the phone at home.
“I—I did not expect you to call,” I say.
“I know,” he says. “I call
ed you at home because I needed to talk to you away from the office.”
My stomach feels tight. “For what reason?” I ask.
“Lou, you need to know before Mr. Crenshaw calls you all in. There’s an experimental treatment that may reverse adult autism.”
“I know,” I say. “I heard about it. They have tried it on apes.”
“Yes. But what’s in the journal is over a year old; there’s been… progress. Our company bought out the research. Crenshaw wants all of you to try the new treatment. I don’t agree with him. I think it is too early, and I think he is wrong to ask you. At least it should be your choice; no one should pressure you. But he is my boss, and I can’t keep him from talking to you about it.”
If he cannot help, why is he calling? Is this one of those maneuvers I have read about normal people doing when they want sympathy for doing wrong because they could not help it?
“I want to help you,” he says. I remember my parents saying that wanting to do something was not the same thing as doing… that trying was not the same thing as doing. Why doesn’t he say, “I will help you,” instead?
“I think you need an advocate,” he says. “Someone to help you negotiate with Crenshaw. Someone better than me. I can find that person for you.”
I think he does not want to be our advocate. I think he is afraid Crenshaw will fire him. This is reasonable. Crenshaw could fire any of us. I struggle with my stubborn tongue to get the words out. “Shouldn’t… wouldn’t it… I think… I think I—we—should find our own person.”
The Speed of Dark Page 5
