Somebody Somewhere (36 page)

I
had to find somewhere to live. I didn't have the slightest idea where. I had made acquaintance with a family down in the south of England. They had a fifteen-year-old autistic son I had met. I asked them if they could help me find somewhere to stay. The wife made a list of places available not far from them. In my mind I had a picture of the place I would live: how it looked, where it stood, what color it was. The first place they came across was a little old free-standing cottage for one.

I could see myself living in this little cottage. I phoned up the real estate agent. Some people had seen it the day before and said they were moving in.

I resigned myself to taking a look at all the second choices I had made a list of. Finally I came across one that seemed okay enough. I was ready to sign the lease but decided to give the first real estate agent another call just in case the people who had seen the cottage had changed their minds.

They hadn't shown up. The real estate agent gave me the address and I caught train after train, arriving at the place I had seen in my mind. I knew this was going to be my place. There were workmen there. I knocked and entered. The house was “me.” I phoned the agent and said I was moving in. Then I phoned up a company that rented pianos in order to arrange for one to arrive the day I moved in.

O
livier was sad about my leaving the hotel, which had been my home. I was moving two hours away and we both seemed sure this wouldn't be so far after all. We would both miss our tunnel ritual and the time we spent in each other's company simply being.

Olivier wanted to meet others like himself. He wanted to find out where they all were. Without having yet met them he thought of them as “his people.”

I got in touch with a parent who ran an organization for high-functioning autistic children. Olivier and I were going to meet them. We stood outside the train station nervously awaiting one of the mothers who was coming to pick us up.

At the first house we met two children, both of whom were clearly very clever and verbal. They seemed to have no aversion to each other's company despite being fairly oblivious to everyone else's. At the second house we met an inquisitive, well-spoken little boy and an older girl named Susan.

Susan was thirteen and had only found out she was autistic the year before. She had come across the reference to her being autistic when she read through some of her mother's letters. “What does ‘autistic' mean?” she had asked her mother. Her mother, who thought autism had more to do with behavior than a system of making sense of things, explained to her that she was “no longer autistic.” Susan was left to wonder why, in spite of being able to act normal she felt she was not like other people.

“What was I like when I
was
autistic?” Susan had asked her mother. “You lived in your own world,” she had told her. Susan had gone to school and written an essay called “my world.” “No one wants to hear about these sorts of things,” the teacher told her. “I'd suggest you get rid of it.” The message that it was shameful to be autistic was loud and clear.

Olivier and I sat on the grass. Susan joined us. Olivier and I were picking grass, tossing it, shredding leaves, making tiny weed bouquets,
and snapping twigs and building piles with them. Susan joined in quietly.

Susan knew I'd written a book, but neither she nor her mother had yet read it. “What's your book about?” she asked me. “It is about ‘my world,' ” I told her. “I will tell you about
my
world,” she said. Her mother sat down to listen.

“My world was beautiful,” said Susan. “It was full of colors and sounds. There were no people in it,” she said matter-of-factly. “One day I made a friend. That's how I lost my world.”

I asked her how this happened. “Well, when I was five I became interested in the way my friend did things and more and more I stopped visiting my world and I lost it,” she explained. Susan was very close to her mother. But Susan had
chosen
this friend. She had discovered her own want.

“I remember my own world very well,” she said. “I used to try to share it with kids as I was growing up but they didn't understand it. They thought I was silly or mad. In the end, I gave up and decided just to be like everyone else.”

When Susan was finished, she got up as matter-of-factly as she had sat down and without expression or response went off for a walk. A “the world” success story, I said to myself.

At thirteen Susan was like a ninety-year-old looking back on the life she once had. It was as if “her world” was the only place of belonging she had ever known, a beautiful world of colors and sounds, a world without meaning or interpretation. A world where one can simply be. She had left it behind and buried it in all but memory in exchange for acceptance for “acting normal.” Olivier and I felt blessed to know each other and to have not given up totally on our true selves despite the knocks.

I
went to visit another autistic boy. Malcolm's mother met me at the station. She was nervous but glad I would meet her and her son. I
had not long made myself acquainted with her house when Malcolm came through the door.

Only in his late teens did Malcolm's mother finally find out why Malcolm was not like other children and now not like other adults. Yet Malcolm, like Susan, hadn't been told he was autistic. In the last two years, according to his parents, he had become more and more disturbed.

As soon as I met Malcolm I was struck by his characterizations. Like me, he had an endless repertoire of commercials that he wove through his language and used as a way of being entertaining and accepted, as Carol once had. I soon saw that most of what Malcolm appeared to be was a façade of triggered responses: constant, almost manic anticipation of expectations; and the most extensive store of copied gestures, accents, facial expressions, and standard verbal anecdotes I had ever seen outside myself.

Malcolm liked me right from the start. He had no friends. No one came to visit him. No one rang him up.

Sitting together in a room on our own, Malcolm ran through a repertoire of one pose after another. “Why do you use these poses?” I asked. “Because it looks good,” said Malcolm, putting on a series of stances which seemed to have nothing at all to do with what he was doing or saying. “Where are your own poses?” I asked. “These
are
mine,” he said. Malcolm seemed to think that because he had chosen them, this made them spontaneous expressions of himself. “Where did you get them?” I asked. “Some are from the TV,” he answered cheerfully. “Why, don't you like them?” “They're not you,” I said. “How about this one?” he asked, putting on yet another with a sort of mockingly sexual pout to go with it. “Yuk,” I said, “it doesn't suit you.” “Why not?” Malcolm wanted to know.

“Poses are meant to say something,” I said, “they're meant to go together with what you are saying or feeling.” “What does this one say?” asked Malcolm, randomly putting on yet another piece from his repertoire. “I don't know,” I said, “I am not very good at reading poses, I just know that other people use them to go with what they are saying or feeling and that you are supposed to use ones that
come from your feelings and not just ones you have copied.” “People wouldn't find me interesting if I used my own,” said Malcolm. “These ones are more interesting.”

Malcolm had such great skill in accumulating repertoires that his ability to function distracted people from the depth of his difficulties. That he probably experienced little of what he did or that his true emotions were unquestionably absent paled in the shadow of his manic façades. Malcolm seemed to play life like an endless series of chess moves.

Malcolm's mother, who had not yet read my book, took me aside.

“Do you think he could be developing a multiple personality?” she asked. “In the last two years he has become seriously disturbed.” “No, I don't think he is,” I said, “multiple personalities are something different.”

Malcolm and I sat alone in the living room together. As I spoke to him he answered me in several variations upon his accent. “Where is your own ‘yes'?” I asked. “Yes,” said Malcolm, putting one on at random. “That's not yours,” I said. “How about this one?” he said, trying another and then another. After he had done five he cut through the performance. “Okay,” he said defeatedly, “this is it.” His own voice was full of such spontaneity and realness that I felt almost knocked off the couch by it. His real self and his own relaxed, fitting intonation contrasted sharply with the others he had run through and this frightened me. I was frightened not just by his own capabilities, talents, and complexity but also by how they illuminated and reflected upon my own. I was in awe of the power of fear as a motivator.

“How much of the real you do you think your parents see?” I asked him. “What percentage?” “About fifteen percent,” he replied seriously, using his own voice, sitting with his own body language, his face with its own matching expression. “Do you think they know who the real you is?” I asked him. “I hope not,” said Malcolm with a shock, his face and body registering his mood. “How do you think that makes them feel?” I asked him. “Pretty bad, I suppose,” said Malcolm without apparent compassion or guilt—his face calm, his stance composed. I knew that to him it probably felt like a matter of
survival. I also knew that, ironically, his own self-denial strategies were getting way out of control and were costing him a life.

I went for a walk in the garden. I came back and handed Malcolm a petal. Its color and its lines, its texture and its smell, seemed entirely lost upon him. Again and again I gave him little bits and pieces. In many ways he was not like me although he did find that meaning dropped out of what was said to him and his sensitivity to sound sometimes became painfully sharp. He also had trouble reading and writing, more indicative of dyslexia than illiteracy.