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

by John Elder Robison

“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 I became shyer, more withdrawn.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.

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 pediatrician 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 1994, 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 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

RECENTLY, ONE OF my friends read the passage above and said, “Well, John, you’re still that way now.” He’s right. I am. The only real difference is that I have learned what people expect in common social situations. So I can act more normal and there’s less chance I’ll offend anyone. But the difference is still there, and it always will be. People with Asperger’s or autism often lack the feelings of empathy that naturally guide most people in their interactions with others.

The worst of it was, my teachers and most other people saw my behavior as bad when I was actually trying to be kind.

Successful conversations require a give and take between both people. Being Aspergian, I missed that. Totally.

Grown-ups explained things to me, so I learned from them. Kids weren’t so good at that.

Machines were never mean to me. They challenged me when I tried to figure them out. They never tricked me, and they never hurt my feelings. I was in charge of the machines. I liked that. I felt safe around them. I also felt safe around animals, most of the time. I petted other people’s dogs when we went to the park. When I got my poodle, I made friends with him, too.

Even at five, I was beginning to understand the world of things better than the world of people.

I was so used to living inside my own world that I answered with whatever I had been thinking. If I was remembering riding a horse at the fair, it didn’t matter if a kid came up to me and said, “Look at my truck!” or “My mom is in the hospital!” I was still going to answer, “I rode a horse at the fair.”

I have since learned that kids with Asperger’s don’t pick up on common social cues. They don’t recognize a lot of body language or facial expressions. I know I didn’t. I only recognized pretty extreme reactions, and by the time things were extreme, it was usually too late.

I didn’t know it myself at that time, but for some reason I had a hard time with names, unless I made them up.

Here is what went through my mind that summer day: Someone got killed. Wow! I’m glad I didn’t get killed. I’m glad Varmint or my parents didn’t get killed. I’m glad all my friends are okay. He must have been a pretty dumb kid, playing on the train tracks. I would never get run over by a train like that. I’m glad I’m okay. And at the end, I smiled with relief. Whatever killed that kid was not going to get me. I didn’t even know him. It was all going to be okay, at least for me. Today my feelings would be exactly the same in that situation. The only difference is, now I have better control of my facial expressions. The fact is, from an evolutionary standpoint, people have an inbred tendency to care about and protect themselves and their immediate family. We do not naturally care about people we don’t know. If ten people get killed in a bus crash in Brazil, I don’t feel anything at all. I understand intellectually that it’s sad, but I don’t feel sad. But then I see people making a big deal over it and it puzzles and troubles me because I don’t seem to be reacting the same way. For much of my life, being different equated to being bad, even though I never thought of myself that way.

“That’s terrible! Oh, I just feel awful!” Some people will cry and carry on, and I wonder … Do they really feel that, or is it just a play for attention? It is very hard for me to know. People die every minute, all over the world. If we tried to feel sorry for every death, our little hearts would explode.

When something sort of bad happens, I don’t have the physical reaction but I still react to the news. When the bad news does not involve danger, my immediate thought is, What can I do to fix things?

I have what you might call “logical empathy” for people I don’t know. That is, I can understand that it’s a shame that those people died in the plane crash. And I understand they have families, and they are sad. But I don’t have any physical reaction to the news. And there’s no reason I should. I don’t know them and the news has no effect on my life. Yes, it’s sad, but the same day thousands of other people died from murder, accident, disease, natural disaster, and all manner of other causes. I feel I must put things like this in perspective and save my worry for things that truly matter to me.

Scientists have studied “brain plasticity,” the ability of the brain to reorganize neural pathways based on new experiences. It appears that different types of plasticity are dominant at different ages. Looking back on my childhood, I think the ages of four to seven were critical for my social development. That was when I cried and hurt because I could not make friends. At those times, I could have withdrawn further from people so that I would not get hurt, but I didn’t. Fortunately, I had enough satisfactory exchanges with intelligent grown-ups—my family and their friends at college—to keep me wanting to interact.

I can easily imagine a child who did not have any satisfying exchanges withdrawing from people entirely. And a kid who withdrew at age five might be very hard to coax out later.

My story isn’t sad, though, because my mind didn’t fade or die. It just rewired itself. I’m sure my mind has the same power it always did, but in a more broadly focused configuration. No one would have looked at me thirty years ago and foreseen that I’d have the social skills I have today, or the ability to express the emotions, thoughts, and feelings you read in this book. I would never have predicted it, either.

Many descriptions of autism and Asperger’s describe people like me as “not wanting contact with others” or “preferring to play alone.” I can’t speak for other kids, but I’d like to be very clear about my own feelings: I did not ever want to be alone. And all those child psychologists who said “John prefers to play by himself” were dead wrong. I played by myself because I was a failure at playing with others. I was alone as a result of my own limitations, and being alone was one of the bitterest disappointments of my young life.

My directness meant that I told people what they needed to hear about their cars, which was good most of the time. And my inability to read body language or appearance meant—in an industry rife with discrimination—that I treated everyone the same.

“So is there a cure?” I asked. “It’s not a disease,” he explained. “It doesn’t need curing. It’s just how you are.”

There are plenty of people in the world whose lives are governed by rote and routine. Such people will never be happy dealing with me, because I don’t conform. Luckily, the world is also full of people who care about results, and those people are usually very happy with me, because my Asperger’s compels me to be the ultimate expert in whatever field of interest I choose. And with substantial knowledge, I can obtain good results. So I’m not defective.

Recent articles suggest that a touch of Asperger’s is an essential part of much creative genius.

I have no idea why I ask the same thing over and over, but I do. If I am made to stop, I often become very anxious.

I didn’t develop the ability to express my feelings until I was in my forties. If I had written my story at twenty-five instead of fifty, it would have been much drier and less emotional.

I am fond of the quote “When you’ve met one Aspergian, you’ve met one Aspergian. We are all unique.” That may be true, but now that I’m meeting other Aspergians, I am finding that some traits I thought were unique to me are actually characteristic of Aspergians.

One last thing: I may look and act pretty strange at times, but deep down I just want to be loved and understood for who and what I am. I want to be accepted as part of society, not an outcast or outsider. I don’t want to be a genius or a freak or something on display. I wish for empathy and compassion from those around me, and I appreciate sincerity, clarity, and logicality in other people. I believe most people—autistic or not—share this wish.