Look Me in the Eye: My Life with Asperger's (2 page)

Yes. Like that.

Once again, my brilliant brother had found a way to channel his unstoppable Asperger energy and talent. When he decided to research our family history and create a family tree, the document ended up being more than two thousand pages long. So once the idea of writing a memoir was in his head, he dove in with an intensity that would send most people straight into a psychiatric hospital.

In a very short period of time, he’d completed his manuscript. It goes without saying that I am swollen with pride over the result. Of course it’s brilliant; my big brother wrote it. But even if it hadn’t been created by my big, lumbering, swearing, unshaven “early man” sibling, this is as sweet and funny and sad and true and heartfelt a memoir as one could find—utterly unspoiled, uninfluenced, and original.

My brother, after thirty years of silence, is a storyteller again.

Prologue

“
L
ook me in the eye, young man!”

I cannot tell you how many times I heard that shrill, whining refrain. It started about the time I got to first grade. I heard it from parents, relatives, teachers, principals, and all manner of other people. I heard it so often I began to expect to hear it.

Sometimes it would be punctuated by a jab from a ruler or one of those rubber-tipped pointers teachers used in those days. The teachers would say, “Look at me when I’m speaking to you!” I would squirm and continue looking at the floor, which would just make them madder. I would glance up at their hostile faces and feel squirmier and more uncomfortable and unable to form words, and I would quickly look away.

My father would say, “Look at me! What are you hiding?”

“Nothing.”

If my father had been drinking, he might interpret “nothing” as a smart-aleck answer and come after me. By the time I was in grade school, my father was buying his Gallo wine by the gallon jug, and he had made a pretty big dent in a jug every evening before I went to bed. He kept drinking long into the night, too.

He would say, “Look at me,” and I would stare at the abstract composition of empty wine bottles stacked behind the chair and under the table. I looked at anything but him. When I was little, I ran and hid from him, and sometimes he chased me while waving his belt. Sometimes my mother would save me, sometimes not. When I got bigger and stronger and amassed a formidable collection of knives (about age twelve), he realized I was becoming dangerous and quit before coming to a bad end over “Look me in the eye.”

Everyone thought they understood my behavior. They thought it was simple: I was just no good.

“Nobody trusts a man who won’t look them in the eye.”

“You look like a criminal.”

“You’re up to something. I know it!”

Most of the time, I wasn’t. I didn’t know why they were getting agitated. I didn’t even understand what looking someone in the eye meant. And yet I felt ashamed, because people expected me to do it, and I knew it, and yet I didn’t. So what was wrong with me?

“Sociopath” and “psycho” were two of the most common field diagnoses for my look and expression. I heard it all the time: “I’ve read about people like you. They have no expression because they have no feeling. Some of the worst murderers in history were sociopaths.”

I came to believe what people said about me, because so many said the same thing, and the realization that I was defective hurt. I became shyer, more withdrawn. I began to read about deviant personalities and wonder if I would one day “go bad.” Would I grow up to be a killer? I had read that they were shifty and didn’t look people in the eyes.

I pondered it endlessly. I didn’t attack people. I didn’t start fires. I didn’t torture animals. I had no desire to kill anyone. Yet. Maybe that would come later, though. I spent a lot of time wondering whether I would end up in prison. I read about them and determined that the federal ones were nicer. If I were ever incarcerated, I hoped for a medium-security federal prison, not a vicious state prison like Attica.

I was well into my teenage years before I figured out that I wasn’t a killer, or worse. By then, I knew I wasn’t being shifty or evasive when I failed to meet someone’s gaze, and I had started to wonder why so many adults equated that behavior with shiftiness and evasiveness. Also, by then I had met shifty and scummy people who
did
look me in the eye, making me think the people who complained about me were hypocrites.

To this day, when I speak, I find visual input to be distracting. When I was younger, if I saw something interesting I might begin to watch it and stop speaking entirely. As a grown-up, I don’t usually come to a complete stop, but I may still pause if something catches my eye. That’s why I usually look somewhere neutral—at the ground or off into the distance—when I’m talking to someone. Because speaking while watching things has always been difficult for me, learning to drive a car and talk at the same time was a tough one, but I mastered it.

And now I know it is perfectly natural for me not to look at someone when I talk. Those of us with Asperger’s are just not comfortable doing it. In fact, I don’t really understand why it’s considered normal to stare at someone’s eyeballs.

It was a great relief to finally understand why I don’t look people in the eye. If I had known this when I was younger, I might have been spared a lot of hurt.

S
IXTY YEARS AGO,
the Austrian psychiatrist Hans Asperger wrote about children who were smart, with above average vocabulary, but who exhibited a number of behaviors common to people with autism, such as pronounced deficiencies in social and communication skills. The condition was named Asperger’s syndrome in 1981. In 1984, it was added to the
Diagnostic and Statistical Manual of Mental Disorders
used by mental health professionals.

Asperger’s has always been with us, but it’s a condition that has flown under the radar until quite recently. When I was a child, mental heath workers incorrectly diagnosed most Asperger’s as depression, schizophrenia, or a host of other disorders.

Asperger’s syndrome isn’t all bad. It can bestow rare gifts. Some Aspergians have truly extraordinary natural insight into complex problems. An Aspergian child may grow up to be a brilliant engineer or scientist. Some have perfect pitch and otherworldly musical abilities. Many have such exceptional verbal skills that some people refer to the condition as Little Professor Syndrome. But don’t be misled—most Aspergian kids do not grow up to be college professors. Growing up can be rough.

Asperger’s exists along a continuum—some people exhibit the symptoms to such a degree that their ability to function alone in society is seriously impaired. Others, like me, are affected mildly enough that they can make their own way, after a fashion. Some Aspergians have actually been remarkably successful by finding work that showcases their unique abilities.

And Asperger’s is turning out to be surprisingly common: A February 2007 report from the federal Centers for Disease Control and Prevention says that 1 person in 150 has Asperger’s or some other autistic spectrum disorder. That’s almost two million people in the United States alone.

Asperger’s is something you are born with—not something that happens later in life. It was evident in me at a very early age, but, unfortunately, no one knew what to look for. All my parents knew was that I was different from the other kids. Even as a toddler, an observer would have thought that I was not quite right. I walked with a mechanical, robotic gait. I moved clumsily. My facial expressions were rigid, and I seldom smiled. Often I failed to respond to other people at all. I acted as if they weren’t even there. Most of the time, I stayed alone, in my own little world, apart from my peers. I could be completely oblivious to my surroundings, totally absorbed in a pile of Tinkertoys. When I did interact with other kids, the interactions were usually awkward. I seldom met anyone’s gaze.

Also, I never sat still; I bobbed and weaved and bounced. But with all that movement, I could never catch a ball or do anything athletic. My grandfather was a track star in college, a runner-up for the United States Olympic Team. Not me!

If I were a child today, it is possible that an observer would pick up on these things and refer me for evaluation, thereby saving me from the worst of the experiences I describe in this book. I was, as my brother said, raised without a diagnosis.

It was a lonely and painful way to grow up.

Asperger’s is not a disease. It’s a way of being. There is no cure, nor is there a need for one. There is, however, a need for knowledge and adaptation on the part of Aspergian kids and their families and friends. I hope readers—especially those who are struggling to grow up or live with Asperger’s—will see that the twists and turns and unconventional choices I made led to a pretty good life, and will learn from my story.

It took a long while for me to get to this place, to learn who I am. My days of hiding in the corner or crawling under a rock are over. I am proud to be an Aspergian.

1

A Little Misfit

I
t was inconceivable to me that there could be more than one way to play in the dirt, but there it was. Doug couldn’t get it right. And that’s why I whacked him.
Bang!
On both ears, just like I saw on
The Three Stooges.
Being three years old was no excuse for disorderly play habits.

For example, I would use my mother’s kitchen spoon to scoop out a ditch. Then, I would carefully lay out a line of blue blocks. I never mixed my food, and I never mixed my blocks. Blue blocks went with blue blocks, and red blocks with red ones. But Doug would lean over and put a red block on top of the blue ones.

Couldn’t he see how wrong that was?

After I had whacked him, I sat back down and played. Correctly.

Sometimes, when I got frustrated with Doug, my mother would walk over and yell at me. I don’t think she ever saw the terrible things
he
did. She just saw me whack him. I could usually ignore her, but if my father was there, too, he would get really mad and shake me, and then I would cry.

Most of the time, I liked Doug. He was my first friend. But some of the things he did were just too much for me to handle. I would park my truck by a log, and he would kick dirt on it. Our moms would give us blocks, and he would heap his in a sloppy pile and then giggle about it. It drove me wild.

Our playdates came to an abrupt end the following spring. Doug’s father graduated from medical school and they moved far, far away to an Indian reservation in Billings, Montana. I didn’t really understand that he could leave despite my wishes to the contrary. Even if he didn’t know how to play correctly, he was my only regular playmate. I was sad.

I asked my mother about him each time we went to the park, where I now played alone. “I’m sure he’ll send you a postcard,” my mother said, but she had a funny look on her face, and I didn’t know what to make of it. It was troubling.

I did hear the mothers whispering, but I never knew what they meant.

“…drowned in an irrigation ditch…”

“…the water was only six inches deep…”

“…must have fallen on his face…”

“…his mother couldn’t see him, so she went outside and found him there…”

What is an irrigation ditch?
I wondered. All I could figure out was, they weren’t talking about me. I had no idea Doug was dead until years later.

Looking back, maybe my friendship with Doug wasn’t the best omen. But at least I stopped whacking other kids. Somehow I figured out that whacking does not foster lasting friendship.

That fall, my mother enrolled me at Philadelphia’s Mulberry Tree Nursery School. It was a small building with kids’ drawings on the walls and a dusty playground enclosed with a chain-link fence. It was the first place where I was thrown together with children I didn’t know. It didn’t go well.

At first, I was excited. As soon as I saw the other kids, I wanted to meet them. I wanted them to like me. But they didn’t. I could not figure out why. What was wrong with me? I particularly wanted to make friends with a little girl named Chuckie. She seemed to like trucks and trains, just like me. I knew we must have a lot in common.

At recess, I walked over to Chuckie and patted her on the head. My mother had shown me how to pet my poodle on the head to make friends with him. And my mother petted me sometimes, too, especially when I couldn’t sleep. So as far as I could tell, petting worked. All the dogs my mother told me to pet had wagged their tails. They liked it. I figured Chuckie would like it, too.

Smack!
She hit me!

Startled, I ran away.
That didn’t work,
I said to myself.
Maybe I have to pet her a little longer to make friends. I can pet her with a stick so she can’t smack me.
But the teacher intervened.

“John, leave Chuckie alone. We don’t hit people with sticks.”

“I wasn’t hitting her. I was trying to pet her.”

“People aren’t dogs. You don’t pet them. And you don’t use sticks.”

Chuckie eyed me warily. She stayed away for the rest of the day. But I didn’t give up.
Maybe she likes me and doesn’t know it,
I thought. My mother often told me I would like things I thought I wouldn’t, and sometimes she was right.