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

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

by John Elder Robison

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Overview

NEW YORK TIMES BESTSELLER

“As sweet and funny and sad and true and heartfelt a memoir as one could find.” —from the foreword by Augusten Burroughs

Ever since he was young, John Robison longed to connect with other people, but by the time he was a teenager, his odd habits—an inclination to blurt out non sequiturs, avoid eye contact, dismantle radios, and dig five-foot holes (and stick his younger brother, Augusten Burroughs, in them)—had earned him the label “social deviant.” It was not until he was forty that he was diagnosed with a form of autism called Asperger’s syndrome. That understanding transformed the way he saw himself—and the world. A born storyteller, Robison has written a moving, darkly funny memoir about a life that has taken him from developing exploding guitars for KISS to building a family of his own. It’s a strange, sly, indelible account—sometimes alien yet always deeply human.

Product Details

ISBN-13: 9780307396181
Publisher: Crown Publishing Group
Publication date: 09/09/2008
Edition description: Reprint
Pages: 320
Sales rank: 69,209
Product dimensions: 5.10(w) x 7.90(h) x 0.80(d)
Age Range: 14 - 18 Years

About the Author

JOHN ELDER ROBISON is the New York Times bestselling author of Look Me in the Eye, Be Different and Raising Cubby. He lectures widely on autism and neurological differences, and is a member of the Interagency Autism Coordinating Committee of the US Dept. of Health and Human Services. John also serves on committees and review boards for the CDC and the National Institutes of Health. A machinery enthusiast and avid photographer, John lives in Amherst, Massachusetts with his family, animals, and machines.

Read an Excerpt

1

A Little Misfit

It 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.

The next day, I saw Chuckie playing in the big sandbox with a wooden truck. I knew a lot about trucks. And I knew she wasn't playing with her truck correctly. I would show her the right way. She will admire me and we will be friends, I thought. I walked over to her and took the truck away and sat down.

"Miss Laird! John took my truck!"

That was fast!

"I did not! I was showing her how to play with it! She was doing it wrong!" But Miss Laird believed Chuckie, not me. She led me away and gave me a truck of my own. Chuckie didn't follow. But tomorrow was another day. Tomorrow, I would succeed in making friends.

When tomorrow came, I had a new plan. I would talk to Chuckie. I would tell her about dinosaurs. I knew a lot about dinosaurs, because my father took me to the museum and showed me. Sometimes I had scary dreams about them, but overall, dinosaurs were the most interesting thing I knew of.

I walked over to Chuckie and sat down.

"I like dinosaurs. My favorite is the brontosaurus. He's really big."

Chuckie did not respond.

"He's really big but he just eats plants. He eats grass and trees.

"He has a long neck and a long tail."

Silence.

"He's as big as a bus.

"But an allosaurus can eat him."

Chuckie still didn't say anything. She looked intently at the ground, where she was drawing in the sand.

"I went to see the dinosaurs at the museum with my dad.

"There were little dinosaurs, too.

"I really like dinosaurs. They're neat!"

Chuckie got up and went inside. She had completely ignored me!

I looked down at the ground where she had been staring. What was she looking at that was so interesting? There was nothing there.

All my attempts to make friends had failed. I was a failure. I began to cry. Alone in the corner of the playground, I sobbed and smashed the toy truck into the ground again and again and again, until my hands hurt too much to do it anymore.

At the end of recess, I was still there, sitting by myself. Staring into the dirt. Too humiliated to face the other kids. Why don't they like me? What's wrong with me? That was where Miss Laird found me.

"It's time to go back inside." She grabbed my little paw and towed me in. I wanted to roll up in a ball and disappear.

Recently, one of my friends read the passage above and said, "Shit, 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. That's why it never occurred to me that Chuckie might not respond to petting in the same way a dog would. The difference between a small person and a medium-sized dog was not really clear to me. And it never occurred to me that there might be more than one way to play with a toy truck, so I could not understand why she objected to my showing her.

The worst of it was, my teachers and most other people saw my behavior as bad when I was actually trying to be kind. My good intentions made the rejection by Chuckie all the more painful. I'd watched my parents talk to other grown-ups and I figured I could talk to Chuckie. But I had overlooked one key thing: Successful conversations require a give and take between both people. Being Aspergian, I missed that. Totally.

I never interacted with Chuckie again.

I stopped trying with any of the kids. The more I was rejected, the more I hurt inside and the more I retreated.

I had better luck dealing with grown-ups. My disjointed replies didn't bring the conversation to an abrupt halt. And I tended to listen to them more than I listened to kids, because I assumed they knew more. Grown-ups did grown-up things. They didn't play with toys, so I didn't have to show them how to play. If I tried to pet a grown-up with a stick, he'd take it away. He wouldn't humiliate me by yelling and running to the teacher. Grown-ups explained things to me, so I learned from them. Kids weren't so good at that.

Most of the time, I played by myself, with my toys. I liked the more complex toys, especially blocks and Lincoln Logs. I still remember the taste of Lincoln Logs. When I wasn't chewing them, I made forts and houses and fences. When I got a little bigger, I got an Erector Set. I was very proud of that. I built my first machines with the Erector Set.

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.

"Look what your grandpa Jack sent you, John Elder!" (My parents named me John Elder Robison to honor my great-grandpa John Glenn Elder, who died before I was born.) My dad had brought home a wooly, ill-tempered, and probably genetically defective dog, most likely a reject from some dog pound. But I didn't know that. I was fascinated. He growled at me and wet the floor when my father put him down.

I wasn't scared of him, because he was considerably smaller than me. I had not yet learned that sharp teeth can come in small packages.

"Poodles are very smart dogs," my father told me.

Maybe he was smart, but he wasn't very friendly. I named him Poodle, beginning a long tradition of functional pet naming. I didn't really know what to do with a dog, and I was always squeezing him and grabbing his tail and yanking in an effort to figure that out. He bit me whenever I yanked too hard. Sometimes he bit hard enough to make my arms bleed, and I would cry. Years later, I told that story to my mother, who said, "John Elder, Poodle never bit you hard enough to make your arms bleed! If he had, that would have been the end of Poodle in our house." All I could say to that was "Little bites are a big deal to little people." And that's how I remember it.

Once, I locked him in my room and he got out. He chewed a dog-sized hole in the bedroom door. We found him lying in the sun in the backyard.

Seeing that, I tried chewing the door myself. My teeth barely made a dent in the paint. I didn't even manage to bite a splinter out of the wood. I realized that Poodle had very sharp teeth. I learned to put my toys away before I went to bed every night. If I forgot, Poodle would come in during the night and eat them.

My parents didn't like Poodle because he ate their furniture. Despite that, Poodle and I slowly became friends. I was always a little wary of him, though, because I never knew what he'd do.

Our home wasn't very happy. The dog ate my toys and snapped, and my parents always fought. One night, I awoke to them yelling at each other in the next room. They often fought at night when they thought I was asleep. It was always stressful and unsettling to me, but this time was different. My mother was crying in addition to yelling. She didn't usually cry.

"Momma!" I yelled loud to make sure she heard me.

"It's okay, John Elder, go to sleep." She came in and patted me on the head, but she went right back out.

I didn't like that at all. Usually, she sat with me, and petted me, and sang to me till I fell asleep. Where did she go? What's going on?

The loud fights were disturbing because I was sure they were fighting about me, and I knew if they got tired of me they could just leave me somewhere to fend for myself. I thought, I have to be really good, so they won't get rid of me.

So I tried to be very quiet and act asleep. I figured that's what they expected.

"He'll go back to sleep," my mother said, quietly. Hearing that, I was wide awake, and even more scared.

"No, he won't," my father cried. "He'll remember this night when he's forty." And then he started sobbing, too. Anything that made both of them cry must be very, very bad.

"Daddy! Don't make Momma cry!" I could not help myself. I wanted to hide under the bed but I knew they'd find me. I was terrified.

My mother came back in and sang softly to me, but she sounded funny. After a few minutes, though, I fell into a troubled sleep.

Much later, I learned that my father had been having an affair with a secretary from the German department at the university where he was studying. My mother told me she looked just like her. I guess the affair unraveled that night, and my parents' marriage unraveled some more, too. That was when my father started to turn mean.

When I woke up the next morning, he was still in bed. He wasn't at school. "Your father is tired," my mother said. "He's resting." I walked over to him. He smelled normal, and he was snoring. I left him alone and my mother walked me to school like she always did.

Reading Group Guide

1. Recent studies indicate that autism affects 1 of every 150 people, or 1 of every 50 families. Do you know people who exhibit any of the traits Robison describes in his book? What do you notice about the way they interact with the world?

2. As a child growing up without a diagnosis, Robison was sometimes called names or labeled “deviant.” Knowing why he was different than others might have helped smooth his way. Today, more children are being diagnosed with Asperger’s than ever before. Discuss the advantages of early diagnosis. Might there also be disadvantages? How does a label affect how we treat someone? How does it affect the way we see ourselves?

3. “Different” kids like Robison are often teased or bullied at school. Does Robison’s story give you any ideas for preventing or stopping that behavior?

4. How would you describe Robison’s childhood? How did his parents contribute to the feelings of loneliness he suffered? How did the birth of his brother change his life?

5. Describe logical empathy. Does it differ from the kind of empathy that most people who don’t have Asperger’s syndrome feel? In Chapter 3, on page 32, Robison writes, “I cannot help thinking, based on the evidence, that many people who exhibit dramatic reactions to bad news involving strangers are hypocrites.” Do you think that’s true?

6. Robison describes the way his Asperger’s sometimes causes him to display inappropriate expressions. For example, he might smile when many people would frown. Have you known people whose facial expressions struck you as odd or overly blank? How did it make you feel, and how did you interpret their behavior?

7. In Chapter 6, “The Nightmare Years,” Robison writes about the new names he chooses for his parents with Dr. Finch’s help. What do they reveal about the family dynamic?

8. Robison describes his struggles in school, which culminated in his being invited to drop out. How might the school system have accommodated him?

9. As a teenager, Robison listened to older people ridicule his dreams of joining a band, yet he did it anyway and became very successful. What might have caused Robison to follow his heart despite contrary advice from friends and family? Did he know something they didn’t, or was it just luck that he succeeded?

10. Why does Robison pull what he calls “pranks”? Did any of them make you uncomfortable? In general, do you think pranks are a legitimate way for children or teenagers to express excess energy or frustration?

11. In Chapter 16, “One with the Machine,” Robison says, “Sometimes I think I can relate better to a good machine than any kind of person.” Discuss the reasons he gives for his affinity. Why might a person find comfort in machinery but not in people?

12. In the same chapter, Robison describes being “the brain of the lighting system” at a rock concert, which requires intense focus and concentration. “You must develop a sixth sense for your system, to feel how it’s doing, to be really great,” he writes. When you engage in an activity you love or at which you excel, are there times when you feel the almost magical sense of focus Robison describes? How is that state of mind different from ordinary consciousness?

13. Despite career advice from music industry insiders, Robison doesn’t want to move to a city. Compare the life he experiences when he’s on tour with KISS to his life back in Shutesbury. Why might the idea of living in a city be intimidating to someone with Asperger’s?

14. Robison describes life on the road with bands in the 1970s. Do you think the experience of traveling with a band would be the same today? Would the experience of traveling with a band be similar to that of traveling with another performing group like a theater company or circus?

15. bison writes that he can’t smile on command. How often do you smile “on command” whether you want to or not? How would not being able to automatically produce the expected facial expression make your work life more difficult? Your personal life?

16. As he explains in Chapter 20, “Logic vs. Small Talk,” Robison is also unable to perform the little verbal niceties that often pass for conversation. Questions like “How’s your wife?” or “Have you lost weight?” don’t occur to him when speaking with friends or acquaintances. Do you remember how you first learned to make small talk? Have you ever struggled with it? Are there any conventions of small talk that strike you as peculiar?

17. Robison describes himself as being very direct, and indeed that is a trait of people with Asperger’s. He says that’s both good and bad because some people appreciate directness while others are offended. What are some situations where directness would be of benefit, and where might it be a disadvantage? Why?

18. After his time with KISS and other rock ’n’ roll bands, Robison moved into the corporate world.What did he like about his job with Milton Bradley? What didn’t he like? How did he feel about his position in management? What made him decide to leave a financially comfortable life as an executive for the uncertainty of starting his own business?

19. Robison has described a number of ways in which he differs from other people. In Chapter 22, “Becoming Normal,” he writes about his transition from “Aspergian misfit” to “seeming almost normal.” How did his differences help him in operating his car business? How might they have hampered him?

20. What kind of father is Robison? How is he different from his own parents? Did anything in Chapter 23, “I Get a Bear Cub,” strike you as funny? How is “Cubby” like his father? How is he different?

21. In Chapter 24, “A Diagnosis at Forty,” Robison meets an insightful therapist who helps him realize that he has Asperger’s syndrome. What effect does this discovery have on Robison?

22. t times Robison calls his little brother Varmint and his wife Unit Two. Discuss Robison’s habit of renaming people. Why do you think he sometimes avoids people’s given names?

23. Discuss Robison’s relationship with his wife, Martha. What special challenges might exist in a marriage to someone with Asperger’s? What benefits?

24. In Chapter 26, “Units One Through Three,” Robison writes about choosing Martha over her two sisters, and about the impossibility of being certain that one has made the best possible choice in life. Do you think there is such a thing as a “best sister”? In the book, Martha answers with “depends what you want her for.” How would you answer that question?

25. When choosing a mate, we confront many pieces of folk wisdom, one of which is: Marry someone who’s similar to you; your shared interests will keep you together. An equally popular piece of advice is: Marry someone who’s different from you. Variety is the spice of life and opposites attract. Do you think a person with Asperger’s would do well to find a spouse who has Asperger’s too? Or would that person fare better with a spouse who doesn’t have Asperger’s? What might be the advantages and disadvantages of each?

26. What do you think of Robison’s writing style? Do you notice any quirks in the way he expresses himself that might have to do with Asperger’s syndrome

27. If you met someone tomorrow who acted a bit strange or eccentric, how might the insights from this story affect how you responded to that person?

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