Look Me in the Eye: My Life with Asperger's Read online

  Contents

  Cover Page

  Title Page

  Dedication

  Author’s Note

  Foreword by Augusten Burroughs

  Prologue

  1 A Little Misfit

  2 A Permanent Playmate

  3 Empathy

  4 A Trickster Is Born

  5 I Find a Porsche

  6 The Nightmare Years

  7 Assembly Required

  8 The Dogs Begin to Fear Me

  9 I Drop Out of High School

  10 Collecting the Trash

  11 The Flaming Washtub

  12 I’m in Prison with the Band

  13 The Big Time

  14 The First Smoking Guitar

  15 The Ferry to Detroit

  16 One with the Machine

  17 Rock and Roll All Night

  18 A Real Job

  19 A Visit from Management

  20 Logic vs. Small Talk

  21 Being Young Executives

  22 Becoming Normal

  23 I Get a Bear Cub

  24 A Diagnosis at Forty

  25 Montagoonians

  26 Units One Through Three

  27 Married Life

  28 Winning at Basketball

  29 My Life as a Train

  Epilogue

  Acknowledgments

  Reading and Resources

  About the Author

  Copyright

  For my brother, who encouraged me to write the story,

  and most especially for Unit Two and Cubby

  Author’s Note

  IN THIS BOOK, I have done my very best to express my thoughts and feelings as accurately as possible. I have tried to do the same when it comes to people, places, and events, although that is sometimes more challenging. When writing of my time as a small child, it is obvious that there is no way for me to remember the exact words of conversations. But I do have a lifetime of experience with how my parents talked and acted, how I talk, and how I have interacted with other people over the years. Armed with that, I have reconstructed scenes and conversations that accurately describe how I thought, felt, and behaved at key times.

  Memory is imperfect, even for Aspergians, and there might well be passages in which I have mixed up people or chronologies. However, this isn’t a story with time-sensitive components. In most cases, I’ve used people’s real names, but in cases where I do not want to embarrass someone or where I can’t remember someone’s name, I have used a pseudonym. In the case of characters that appeared in my brother Augusten Burroughs’s first memoir, Running with Scissors, I have used the same pseudonyms he used.

  I hope all the people who appear in my book feel good about my treatment of them. There are a few who may not feel good, and I hope they at least feel I was fair. I thought very hard about my portrayals of everyone, and I tried to treat the tougher scenes with sensitivity and compassion.

  Above all, I hope this book demonstrates once and for all that however robotic we Aspergians might seem, we do have deep emotions.

  Foreword

  by Augusten Burroughs

  MY BIG BROTHER and I were essentially raised by two different sets of parents. His mother and father were an optimistic young couple in their twenties, just starting out in their marriage, building a new life together. He was a young professor, she was an artistically gifted homemaker. My brother called them Dad and Mamma.

  I was born eight years later. I was an accident that occurred within the wreckage of their marriage. By the time I was born, our mother’s mental illness had taken root and our father was a dangerous, hopeless alcoholic. My brother’s parents were hopeful and excited about their future together. My parents despised each other and were miserable together.

  But my brother and I had each other.

  He shaped my young life. First, he taught me how to walk. Then, armed with sticks and dead snakes, he chased me and I learned how to run.

  I loved him and I hated him, in equal measure.

  When I was eight, he abandoned me. At sixteen, he was a young, undisciplined, unsupervised genius, loose in the world. Our parents didn’t try to stop him from leaving. They knew they couldn’t give him whatever it was he needed. But I was devastated.

  He would be away from home for weeks, then suddenly appear. And he didn’t just come home with dirty laundry, he came home with stories about his life out there in the world. Stories so shocking and outlandish, so unspeakable and dangerous, they just had to be true. Plus, he had the scars, broken nose, and stuffed wallet to prove it all.

  When he returned from one of his adventures, the tension at home evaporated. Suddenly, everyone was laughing. “What happened next?” we had to know. He entertained us for days with tales of his fantastical life, and I always hated to see him leave, to let him slip back into the world.

  He was a natural and gifted storyteller. But when he grew up, he became a businessman, not a writer. And this always felt somewhat wrong to me. He was successful, but none of his employees or customers knew, would even believe, the stories the man contained.

  In my memoir, Running with Scissors, I devote only one section to my older brother, because I saw him even less frequently during the years in which those events are set. In the chapter “He Was Raised Without a Proper Diagnosis,” I describe some of his fascinating behavior as a young man who would later be diagnosed with Asperger’s syndrome, a mild form of autism. Much to my amazement, when I embarked on my first book tour, people with Asperger’s showed up and introduced themselves. Running with Scissors contains (among many indignities) a crazy mother, a psychiatrist who dresses like Santa, toilet bowl readings, a woman I mistook for a wolf, and a Christmas tree that just would not go away. And yet without fail, at every event, somebody approached me and said, “I have Asperger’s syndrome, just like your brother. Thank you for writing about it.” Sometimes parents asked questions about their Asperger children. I was tempted to dispense medical advice while I had their attention, but I resisted.

  Aren’t there any proper books for these people? I wondered. To my amazement, I discovered there was not all that much out there on the subject. There were a few scholarly works, and some simpler though still clinical texts that made people feel the best they could do for their Asperger children would be to buy them a mainframe computer and not worry about teaching table manners. But there was nothing that could even begin to describe my brother.

  I wrote about him again in an essay in my collection Magical Thinking. And more people came forward. I began toying with the idea of writing a book about him. It would be fascinating, he would love the process, and all I’d really have to do is start him talking and type really, really fast. I could keep the essay’s heartwarming title (“Ass Burger”) and add the subtitle “A Memoir of My Brother.” Though I enjoyed designing the cover in my head, I wasn’t going to be free to write the book that went inside it anytime soon.

  IN 2005, our father became terminally ill and my brother became distraught, confused, and fully human. For the first time in my life, I saw him weep openly as he sat at our father’s hospital bed and stroked his head.

  It had the outward appearance of a touching moment between father and son. But I’d never seen my brother behave like this before. People with Asperger’s don’t access or show feelings, certainly not to this extent. I’d never seen such an unbridled display of raw emotion.

  I felt conflicted. On the one hand, it was a breakthrough. On the other hand, it’s a bit of an understatement to say there is a history of mental illness in our family, so I was worried that it might be less breakthrough than breakdown.

  After our father died, my normall
y animated and “tail up and activated” brother was depleted and sad. He started to worry about his health and consider, perhaps for the first time, his own mortality.

  Not knowing what else to do, I sent him an e-mail about our father’s death with the instruction “Write about it.” He responded with a question. “What am I supposed to write?” I explained that it might release some of the sad feelings he was dealing with, and I gave him the oldest rule in writing: Show, don’t tell.

  A few days later, he sent me an essay about our father, about visiting him in the hospital as he lay dying, and the memories—most of them dark—that arose from the past. It was stunningly honest and undeniably beautifully written.

  I knew he had a story to tell, I thought, but where the hell did that come from?

  The essay went up on my website and quickly became the most popular feature. Gratifyingly yet humblingly, about as much mail started to come in about him as about me. Will you publish more of his work online? Has he written anything else? How is your brother doing now?

  So, in March 2006, I said to him, “You should write a memoir. About Asperger’s, about growing up not knowing what you had. A memoir where you tell all your stories. Tell everything.”

  About five minutes later, he e-mailed me a sample chapter. “Like this?” was the subject line of the e-mail.

  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

  “Look 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.

  SIXTY 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 rema
rkably 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.