Living in an Alien World
Living in an Alien World
A “New and Improved Model”
Asperger's in History
Being a Misfit
Explaining to the World
Labeled and Judged
Enjoying an Asperger's Syndrome Life
Special Interests for Lifelong Satisfaction
Luke Jackson was twelve years old when he found out he had Asperger's syndrome. One day in his home in England, his mother casually plopped an article on the table in front of him. Luke, being an avid reader, picked it up and, for the first time in his life, discovered some important answers about himself. The article was about AS, and Luke realized that he had every symptom listed. He remembers: “It was as if I had a weight lifted off my shoulders….I had finally found the reason why other people classed me as weird. It was not just because I was clumsy or stupid….I finally knew why I felt different, why I felt as if I was a freak, why I didn't seem to fit in. Even better, it was not my fault!”34
Luke's mother had known he had AS since he was about seven years old, but she had been afraid to tell him and afraid he would feel bad about himself. Luke, however, was tremendously relieved. Knowing he had AS helped him to feel better about his behavior. It helped him to deal with living in the neurotypical world. Far from being stupid, Luke is a gifted teen who wrote an advice book for other AS teens when he was just thirteen years old. He titled it Freaks, Geeks, & Asperger Syndrome, because even if he is a “freak,” he does not care. He has learned to see himself as a “new and improved model”35 of human being. Luke's struggle to see himself in a positive way is the hardest part of living with AS, but it is a journey that every person with AS has to make. As people with AS grow up, they have to adjust and adapt to the complex social demands of a larger world. Not all of their problems are unique to AS, but their ability to cope can be sorely tested. In the end, however, many are remarkably successful.
When the diagnostic characteristics of Asperger's syndrome are applied to famous figures in history, a long list of people who may have had AS is available. The list includes scientists Albert Einstein (who could not speak fluently until he was seven years old) and Isaac Newton (who had to drop out of high school). Abraham Lincoln, Thomas Jefferson, and Napoléon Bonaparte may have had AS. Writers Jane Austen and George Orwell had AS traits. Composers Ludwig van Beethoven (who reportedly poured ice water over his head before he wrote music) and Wolfgang Mozart showed symptoms of AS. Peanuts creator Charles Schulz and Muppet inventor Jim Henson could have had AS. Today rock star Gary Numan and Pokémon inventor Satoshi Tajiri have been diagnosed with AS. Diagnosing people in history with Asperger's is controversial, but some researchers enjoy comparing AS traits to the descriptions of the behavior of famous people.
When children with AS are little, they often get along without too much trouble. If they want to talk about batteries or spark plugs, adults will listen indulgently. If they have tantrums when overstimulated, parents may not understand the real reason, but they do know tantrums are normal for young children. If AS children need to be alone, it is easy to escape to a bedroom where no one disturbs them. Even when families recognize that something is wrong, small children have little understanding that they are different. That all changes as children grow up and have to cope with the social world of school, making friends, and following teachers' rules.
A teenager who posted his story anonymously on an AS Web site called O.A.S.I.S. was diagnosed at age twelve. He says that he had always known he did not fit in and was different. But the worst problems started around the fifth grade, before anyone knew he was struggling with AS. Around this time, he became terribly sad because of his social awkwardness and lack of friends. A doctor put him on medication for depression. Nevertheless, he describes trying to be socially normal at school as “draining, discouraging, angering, and depressing.”36 After this young man was diagnosed, he understood why he had trouble, but that did not prevent middle school and high school from being tough challenges. He was bright and had no problems with the academic work, but he remained an outsider—someone who was laughed at and teased for his differences.
Slowly the teen memorized “cool and timely sayings” and copied the social skills of others. He made so many mistakes,
however, that he was rejected and scorned by most of the other students. He was the last to be picked when others were choosing sides for a game. He did weird things such as doing his homework during recess instead of socializing. When people told jokes at his expense, he could not understand them. He says he was an “easy target”37 for bullying.
As he progressed through high school, the teen eventually made a few close friends and learned to accept himself. His social problems improved. Today this courageous young man offers advice for others with AS. He says that AS is not a prison sentence but a description of one way of being, and he strongly believes that the AS way is legitimate and acceptable. He does not want to be changed. He offers this analogy:
Imagine placing a layer of peanut butter on top of a piece of bread, and then a layer of jelly on top of that, and then another layer of peanut butter. The layer of jelly is analogous to a person's Asperger Syndrome. An attempt to remove the layer of jelly smoothly would prove to be impossible, and if the jelly were removed, the piece of bread would be left looking completely different afterwards because a great amount, possibly all, of the peanut butter would have to removed as well. The sandwich may be more traditional without the jelly, and on some days, its eater may not be in the mood for the jelly, but acceptance of the jelly's presence can go a long way.38
Liane Holliday Willey does not mind telling anyone she has Asperger's syndrome, but sometimes she needs a quick and easy way to do it. For example, she often gets lost, feels confused, and needs to ask strangers for help. She finally printed up a business card that she could carry with her and hand to people. It reads, in part:
I have Asperger's Syndrome, a neurobiological disorder that sometimes makes it difficult for me to speak and act calmly and rationally. If I have given you this card, it probably means I think I am acting in a way that might be disturbing to you. In short, Asperger's Syndrome can make it difficult for me to: speak slowly, refrain from interrupting, control my hand movements and my blinking. It also makes it hard for me to follow your thoughts so that I might misunderstand what you are trying to say or do. It would help me if you would speak calmly and answer any questions I might have, clearly and completely. I apologize if my behaviors seem inappropriate.
Liane Holliday Willey, Pretending to Be Normal. London and Philadelphia: Jessica Kingsley, 1999, p. 129.
Acceptance does not come easily for most school-aged people with AS. Teasing and bullying are common. Luke feels as if he has been bullied his whole life. He figures that some people just pick on anyone who is different. He is different in the way he is often alone at school instead of with friends and because he does not make an effort to fit in by acting tough and engaging in fights. Luke was never willing to fight; he says he does not “see the point.” He also objects to “running with the pack” and acting interested in topics that bore him. He says, “I never have and I never will. I don't see any point in pretending that I like things when I don't.” He adds, “This kind of stuff is beyond my comprehension. The one thing I have noticed in this life is that the world is full of idiots.”39
Luke has a mature attitude and a determination to be true to himself, but that meant that he was punched, shoved, kicked,
laughed at, and called names. One day Luke tried to escape the bullying by hiding in the school changing rooms. The two worst bullies found him all alone. He says they
began toying with me in much the same way as a cat plays with a mouse. Pulling and pushing, teasing and cajoling, they seemed to revel in my discomfort. Thinking of nothing but the need to escape these brainless baboons, I pushed my way past them and kept on running. Through the schoolyard, out of the school gates, I ran and ran but still they pursued me only to finally catch up with me and shower me with kicks and punches.40
A passing adult finally saw the torment and chased off the boys, but for Luke, it was the last straw. He and his mother decided it was time to change to a private school, and Luke never went back to that public school again.
Today Luke has learned strategies for avoiding being bullied. He knows better than to go off by himself when he is at school. He has taken tae kwon do, a martial art, for several years and learned to defend himself. Even though people with AS may do badly at team sports, they can do well with individual sports that do not demand social interaction. Luke says his coordination was terrible at first, but with the help of his teacher he got over his clumsiness and learned to love the physical training. One thing that Luke refuses to do, however, is try to change who he is. He is happy when by himself; he is devoted to his special interests; and he chooses his few friends carefully. He likes himself the way he is. He argues, “Why should we have to behave like everyone else just so that we don't get picked on? That is so unfair!”41
Tim Page, a man diagnosed with AS as an adult, would agree. He remembers failing in school because it was so hard to pay attention even though his intelligence was superior. He could make no friends among his classmates, who treated him like a freak. When his class was playing team sports, such as kick-ball or baseball, he felt continually humiliated. Teammates teased and taunted him as he inevitably missed the ball altogether. He often ended up in tears while comforting himself with all the things he could do. He did not understand why other students thought his special interest in the history of music and films was worthless. He gave up trying to be an accepted part of the group. “Meanwhile,” he says, “the more kindly homeroom teachers, knowing that I would be tormented on the playground, permitted me to spend recess periods indoors, where I memorized vast portions of the 1961 edition of the World Book Encyclopedia.”42
Page was not diagnosed with AS until 2000, when he had already become a successful music critic and writer, but the diagnosis was a relief. He finally had an explanation as to why even his teachers and parents had disapproved of him. His teachers were angry at his failing grades and his poor social skills. His parents kept taking him to doctors and therapists to find out what was wrong with him. His gym teacher treated him with such contempt that he still says she is “the only person in the world I just might swerve to hit on a deserted road.”43
Adults may not bully people who are different, but they often misunderstand people with AS and treat them poorly. John Elder Robison was not diagnosed until he was forty years old, so he dealt with the misinterpretation of his behavior throughout most of his life. When at last he understood his AS, he felt extreme relief and finally realized, “I was not a heartless killer waiting to harvest my first victim. I was normal, for what I am.”44 Robison never felt violent or cold and heartless, but he had heard the accusation from family and teachers so often as a child and teenager that he feared he was a secret criminal inside. Because he could not bear to look into people's eyes and could not display his emotions, they said things like “What are you hiding?” “You're up to something. I know it,” “You look like a criminal,” and “I've read about people like you. They have no expression because they have no feeling.”45
Robison remembers: “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.”46 Today Robison says, “In fact, I don't really understand why it's considered normal to stare at someone's eyeballs.” He adds, “In fact, in recent years I have started to see that we Aspergians are better than normal!”47
Learning to accept oneself and feeling normal is not easy when adults act as if an AS teen is defective or bad. Luke remembers one class experience when he was daydreaming (which he knows was wrong), but the teacher's reaction and the communication mistakes that followed demonstrate just how difficult it can be to be an AS thinker in a neurotypical world:
The angry teacher interrupted Luke's daydream and growled, “Jackson, would you care to tell us exactly where you are?”
Luke (taking the question literally) replied, “Class E2, Sir.”
The angrier teacher responded, “Are you trying to be smart?”
Luke (again literally) says, “Yes, sir.” He knows everyone is supposed to try to be smart in school and assumes the teacher will be pleased with his answer.
Furiously, the teacher exclaims, “Jackson, I will not, I repeat not, tolerate such insolence. You can pull your socks up or get to the headmaster [principal].”
Luke smiles. He has finally learned that “pull your socks up” does not mean he is supposed to lean over and pull up his socks. He is proud that he understands this figure of speech. He grins to himself and picks up his pencil to get on with his work, as the teacher ordered him to do.
The teacher is outraged by Luke's facial expression. He snarls, “This is no laughing matter and how dare you ignore me when I am speaking to you?”48
Luke is completely confused and ends up with detention that day. This is what it is like to live with AS, more often than not. Luke comments in his book that when he was younger, he might have had a tantrum over the unfairness, but now he has learned to control his temper. His trick is to think about his special interests to calm himself down.
Living with AS is not all negative experiences. Being alone and concentrating on special interests are sources of happiness for most AS people. Luke's special interests include computers, PlayStation, and Pokémon. He can spend many hours absorbed in computer games or just talking about the workings of computers. And he has found some friends who enjoy the same activities he does, even if they do not enjoy the same level of detail that he enjoys.
Stephen Shore, a man with Asperger's, remembers how meaningful his special interest was when he was young. He says:
Catalogues and manuals were always of great interest and comfort as they were predictable. Often I compared sizes and versions of products offered in the catalogues. Air conditioner capacities as expressed in British thermal units caught my fancy one day, so in every catalogue I would seek the highest capacity air conditioner that ran on 115 volts alternating current.49
Many experts believe that special interests are a source of comfort and predictability in an otherwise confusing, chaotic world. Special interests can help people with AS to be less anxious, to feel calm and comfortable, and to find pleasure in an environment where other people can be rejecting and unfriendly. One woman with AS explains, “It's easy to bestow love onto objects rather than people because although they can't love back they can't rebuke either.” She adds that a special interest provides a safe place “where no one can get hurt.”50 Nita Jackson, a teen with AS, found pleasure in a collection of Barbie dolls and My Little Ponies. She did not play with the dolls and ponies. She lined them up and organized them by their names in alphabetical order. Only as she grew older was she able to extend her interests to people.
Liane Holliday Willey continues to find pleasure and comfort in one of her special interests. She says that most of her AS traits have “faded away” as she has matured, but she still needs a way to relax. One of her special interests is architecture. She says, “To this day, architectural design remains one of my most favorite subjects and now that I am older I indulge my interest, giving in to the joy it brings me.”51 Willey adds, “When I feel blighted by too many pragmatic mistakes and missed communications, I find my home design software programs and set about building a perfect sense home. There is something about the architectural design process that makes my brain click and fit.”52
Temple Grandin, a woman with either high-functioning autism or AS, had a special interest in animals throughout her childhood. She was able to feel compassion for animals and to understand their feelings in a way she never could manage with people. When she grew up, her special interest became her career. She is a professor at Colorado State University and an expert on animal behavior and caring for livestock. She says she is living proof that people with autism spectrum disorders can live happy, successful, and fulfilled lives, despite their differences.
Grandin's lifestyle may not be typical. She does not have a lot of close friends, for example, but she is satisfied with her limited social contacts. She once explained:
I know that things are missing in my life, but I have an exciting career that occupies my every waking hour. Keeping myself busy keeps my mind off what I may be missing. Sometimes parents and professionals worry too much about the social life of an adult with autism. I make social contacts via my work. If a person develops her talents, she will have contacts with people who share her interests.53
Grandin's life and the lives of people with AS may be different, but many have come to realize that they can celebrate that difference and be glad to be the people they were meant to be.