Look Me in the Eye: My Life with Asperger's (31 page)

Cubby was only five at the time, and I didn’t want to shock him with talk of the scandals, so I just said, “Santa had some trouble with the law, and he had to leave town.”

Cubby was fascinated, hearing all this Christmas history. I could tell he was anxious to go home and tell his mom and his friends what he’d learned.

“See that thing like a spear over the bar?” I pointed to a huge lance hanging over the top shelf of whiskies. Cubby looked up. Like most boys his age, he loved weaponry. “It’s called a harpoon. That’s from Santa’s great-great-grandfather. He hunted whales with it. He might have used it to fend off polar bears when they had to walk out across the ice.”

Cubby’s eyes were wide. He was imagining holding a giant polar bear at bay, snapping at the harpoon. Even in the dark barroom, I could see he was very impressed. Our food arrived. He drank two more Cokes and ate half his hot dog. It was really tough to get him to eat all his food, even with harpoons on the walls.

It was late afternoon when we left the Sailor’s Rest and headed for home. Cubby was tired, but he’d had a good day. He got up off his barstool, staggered to the door, and climbed into his car seat. I strapped him in, and he fell asleep.

It would be a few more years before Cubby stopped believing my stories. Until then, he scanned the skies for flying lizards and watched for elves whenever we saw a ship.

There’s quite a bit of evidence that suggests Asperger’s can be inherited. When I learned about my own Asperger’s, Cubby was six, and I was immediately concerned that Cubby might be that way, too. And he is, but to a much lesser extent than me. As he grew up, I watched him carefully and remembered the times I had struggled as a child. Sometimes I’d watch him make the same mistakes I did, and I would cringe. I tried explaining what was happening to him, and it seemed to work. Cubby began making friends, and he grew up without the worst of my Aspergian traits.

Now that he’s a teenager, the difference between Cubby and me is staggering. On Friday nights, he’ll invite six or seven friends over, and they’ll talk and laugh and watch TV and eat pizza till midnight. He’s the life of the party—something I dreamed about but never attained.

In other ways, we are very much alike. He’s blessed with my gifts for mathematics and imagination. At sixteen, he got Cs in school because he was bored, but his knowledge of calculus exceeded that of his teachers. And he shares my fascination with pyrotechnics. He figured out how to make his own flash powder, and he detonates homemade fireworks in the meadow behind our house. It’s quite impressive.

I am quite sure Cubby will accomplish another of my childhood dreams: to graduate from high school and go on to finish college.

Cubby has gotten bigger and smarter over the seventeen-plus years that I’ve had him. He has his own ideas and thoughts now, and he has little use for me anymore. At about age nine, he became very hard to trick. By thirteen, it was almost impossible to trick him. Now he tries to trick us, and he successfully tricks other kids.

Last summer, when he thought I wasn’t looking, I observed Cubby telling one of the neighborhood six-year-olds that there were dragons living in the storm drains, under our street.

“We feed them meat,” he said while dropping bits of hot dog through the grate, “and then they don’t get hungry and blow fire and roast us.”

Little James listened closely, with a very serious expression on his face. Then he ran home to get some hot dogs from his mother.

I was very proud of Cubby.

24

A Diagnosis at Forty

B
y the time I was forty, I had managed to make and keep a few friends, one of whom is an insightful therapist, TR Rosenberg. He had called me wanting to buy a Land Rover. I had a red one that I was looking to sell, and I drove to his house in Leyden, up in the Berkshires, to show it to him.

We decided to go for a ride on some trails near his home. He owned a Suzuki Samurai and he wanted to see if the Land Rover would outperform it off-road. So we drove the Land Rover all the way to the edge of the Green River, deep into the woods by the Vermont border. At that point, the trail dropped into the river, at a spot where ox teams used to pull wagons across the shallow ford to the other side. Descending to the river, the road had been worn deeply into the ground so that we were driving at the bottom of a V with high dirt banks to either side. There was no room to maneuver. The only choices were straight ahead or straight back. TR stopped at the edge of the river and got out.

“You better back this thing up. I’m not comfortable backing it all the way up the hill.”

I looked back at the rough and rocky trail leading up the hill, and out at the river. I wasn’t eager to back the Land Rover all that distance up a steep hill, either. The oxcart road emerged from the river on the other side, about one hundred feet away. Water swirled around rocks in midstream. Maybe I didn’t have to back it out.

It can’t be that deep if they drove ox teams across,
I said to myself.
I’m sure I can drive out there.
I walked to the edge. I could see bottom under the swirling water. I got back in the Rover.

“Let’s go,” I said. And I drove over the edge, into the river. Water surged back over the hood, and TR recoiled in alarm.
Deeper than I thought,
I said to myself. I gunned the motor and the Rover moved into shallower water in midstream. The water at the edge must have been about three feet deep.

I could hear the water bubbling at the back, where my exhaust pipe was now submerged, and water was beginning to come up through the floor seams. I cut the wheel, did a three point turn in midstream, gunned the motor, and headed for the bank. The wheels spun a bit and we scrambled onto shore, pointing back uphill.

“You can drive again,” I said, climbing back out of the driver’s seat.

“Wow!” TR didn’t have anything else to say for a long moment as we listened to water pour out of the Rover as it drained. It never missed a beat. “Damn! My Suzuki couldn’t do that!” Having gotten over his shock, TR bought the Land Rover.

When I delivered it a few days later, we decided to take another ride. This time, we drove far into the woods, just over the Vermont border. I drove a long way down a woods trail, and when I went to turn around, I hit an old tree stump that was hidden under the leaves. We were stuck.

We got out to see what was wrong, and TR said, “The wheels seem to be pointing in two different directions.”

It was true. The stump had bent the front end so that the left wheel was turning left and the right wheel was turning right. TR’s new Rover wasn’t going to drive home without a new tie rod.

We decided to walk back to the road and find a phone. “I’ll have to get some parts and come back to rescue the car,” I said. TR was remarkably calm, given that I’d just impaled his new rig on a tree stump.

As we started up the trail, darkness fell and it began sleeting. My asthma was aggravated by stress in those days, and it started acting up. I could hardly walk.
Son of a bitch,
I thought.
First I wrecked his truck, and now I’m going to freeze to death in the woods.
But I didn’t drop dead. I kept going. TR was remarkably patient, and we made it to a phone. His wife came and picked us up, my asthma settled back down, and I rescued the Rover the next day.

From that beginning, we became good friends. For someone as mechanical and robotic as I can be, he’s an unlikely companion. He’s warm and friendly—sort of chubby and jolly and teddy bear–like. I’ve also learned that he’s a very perceptive fellow. For a number of years, he was director of counseling for the Academy at Swift River, a well-known school for troubled teens in the Berkshires. He then went on to found a company that helps teenagers in difficulty make the transition into functional adulthood.

Over the years, TR had noticed certain odd things about me, but he never said anything. One day, having known me about ten years, he decided to tell me about his observations. He deliberated about telling me for quite a while, though. He was worried about how I’d react. After all, I looked pretty normal most of the time. I had founded a successful business. I was able to talk to people, and people got along with me, although some found me odd. I had a wife and a son. I wasn’t in trouble with the law, I didn’t drink, and I didn’t do drugs.

TR had taken to coming down to visit me at lunchtime every now and then. One day he said, “Therapists learn not to analyze their friends if they want to have friends. But there is a condition in this book that fits you to a T. I’d like you to read this and see what you think.” And he handed me a book:
Asperger’s Syndrome,
by Tony Attwood.

I picked it up. Warily. “What the hell is this?”

I thought,
Ten seconds ago, I was telling him what I had just read about Caterpillar’s newest D10 bulldozers and how they plan to compete with Komatsu in Asia, and now he hands me this?

Seeing my wariness, he quickly continued, “I’m sorry to spring this on you like this. I’ve thought about it a lot. This book describes you exactly. You could be the poster boy for this condition. Your fascination with trains and bulldozers…it’s in here. The way you talk. The way you look at people, and how hard it is for you to make eye contact. The way you think.”

“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.”

Sitting at the table, I began scanning the book. I always read when I am eating alone, though I have learned that it’s rude to do so when eating with other people. But this moment appeared to be an exception. One of the first things I read was this:

Diagnostic Criteria for 299.80 Asperger’s Disorder

A. Qualitative impairment in social interaction, as manifested by at least two of the following:

Marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction.

Well, I thought, that certainly describes me. Not looking at people, making the wrong expressions, and gesturing when I should be still…that was me all right, and it wasn’t good. I kept reading.

Failure to develop peer relationships appropriate to developmental level.

That fit me exactly. When I was younger, I had never been able to connect with kids my own age.

A lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people).

Well, sure. If I can’t connect with people, how can I be expected to show them stuff? That was me, too.

Lack of social or emotional reciprocity.

I’ve certainly heard that one before.

I immediately realized he was right. It did fit me. Completely. It was like a revelation. I realized that all the psychologists and psychiatrists and mental heath workers I had been sent to as a child had completely missed what TR had seen.

As a child, I had been told I was smart but I was lazy. Reading the pages, I realized I wasn’t lazy, just different.

I knew that I did not look at people when I talked to them. Hell, I had been beaten up and criticized for that all through my childhood. But until I read that book I had never realized my behavior was unusual. I had never understood why people treated me the way they did. It had always seemed so mean, so unfair. It had never occurred to me that other people might find what I did (or did not do) naturally disconcerting. The answer to “Why won’t you look me in the eye, young man?” was right there in the book.

The realization was staggering.
There are other people like me. So many, in fact, that they have a name for us.

I kept reading, willing my eyes to pick up the pace. My head spun.

I had spent most of my life listening to people tell me how I was arrogant, aloof, or unfriendly. Now I read that people with Asperger’s
display inappropriate facial expressions.
Well, I certainly knew about that. When I was a child, I was told my aunt had died, and I grinned even though I was sad. And I got smacked.

Just reading those pages was a tremendous relief. All my life, I had felt like I didn’t fit in. I had always felt like a fraud or, even worse, a sociopath waiting to be found out. But the book told a very different story. I was not a heartless killer waiting to harvest my first victim. I was normal, for what I am.

How could all those so-called professionals have missed that? How could they have been so completely wrong?

To be fair, Asperger’s syndrome was not recognized as a distinct condition in the
Diagnostic and Statistical Manual of Mental Disorders,
the bible of mental health professionals, until fairly recently, when I was in my thirties. The upshot was that I spent many years adapting to a condition I didn’t know I had. Learning about Asperger’s was truly a life-transforming experience.