October 13, 2007
A World Apart
Autism and success are not mutually exclusive
by David Royko
Look Me in the Eye:
My Life With Asperger's
John Elder Robison
Crown, 288 pages, $25.95
"What is she thinking?" "What is he feeling?"
When it comes to kids, usually we don't have to ask. At least before the black hole of adolescence swallows all desire to talk with adults, especially parents, most children are open books. Their lack of guile can be refreshing or mortifying, their emotions as visible as the seams of a sweat shirt worn inside out. While we might offer a penny for their thoughts, the emotions come free of charge, courtesy of their faces, bodies and voices.
For parents of people who are autistic, it's different. Their children's thoughts and most emotions are anything but obvious. Those who are interested must become sleuths.
As disconcerting as this may be for those trying to interact with, care for and love these individuals, it's nothing compared to what it's like for them. We navigate most of the social world automatically. As baffling as an autistic is to us, for him (and males make up three-quarters of autistics), it is the entire world of humanity that makes no sense. As the renowned -- and, in some ways, atypically communicative -- autistic Temple Grandin has described, it is like being "an anthropologist on Mars."
Autistics diagnosed with Asperger's syndrome sit at the uppermost rung of the functional ladder, often possessing exceptional intellectual abilities but, like all autistics, lacking a crucial ingredient that informs and lubricates virtually all social interaction: empathy. At its core, empathy starts with the idea that others have their own minds, their own thoughts and feelings. Autistics are virtually blind to this, and to the other major indicators of other people's thoughts and feelings, like the meaning of facial expressions, body language, tone of voice and subtleties of language -- humor and sarcasm most of all. To them, our's is a foreign world.
It also can be a hostile world. John Elder Robison was described by teachers, therapists, police and acquaintances as, at best, a weirdo, and at worst, a future serial killer. Because Asperger's syndrome was recognized as a formal diagnosis only in 1994, being born in 1957 meant Robison's lack of facial expressions and odd ways of responding, if he responded at all, were misinterpreted as simply bad, anti-social behavior. Living on his own by 16, sometimes in cardboard boxes or in the woods near his town, it seems miraculous that he was able to navigate the world to become successful, professionally and personally, all without knowing that he suffered from high-functioning autism -- Asperger's syndrome.
In fact, if one were to glance at Robison's resume, envy might be what a non-autistic would feel. While barely out of his teens, Robison got to live the rock-star life, joining the band Kiss in the late 1970s as an electronics wizard. He created an array of audio and visual effects for one of rock's biggest and most theatrical groups, including their famed rocket guitars. These days Robison owns a car dealership and repair center in Springfield, Mass., catering to the world's greatest cars, including Rolls Royces. That he owns one speaks to his love for mechanical and design perfection. Asperger's sufferers and other autistics, by definition, are impervious to snob appeal.
Machines and electronics were always more appealing to Robison than people were, since they never tricked or surprised him and were never mean. He understood them better than he did people, and by junior high school he had made "several key breakthroughs" in working on a local rock band's equipment:
"First, I had gained an understanding of the electronic components themselves. They were the building blocks of everything to follow. Next, I somehow figured out how to visualize the complex calculus functions that describe the behavior of electronic circuits in time. For example, I saw the pure tones of a guitar going into a circuit, and I saw the modified waves -- immeasurably more complex -- coming out. I understood how changes in the circuit topology or component values would alter the waves. And, most remarkably, I developed the ability to translate those waves I saw in my mind into sounds I imagined in my head, and those imagined sounds closely matched what emerged from the circuits when I built them. . . .
"I spent my free evenings at local concerts, and became part of the scene. Club owners, bouncers, and even bartenders began to recognize me; musicians talked to me and everyone seemed to respect me. I felt good about myself, and I felt even better when I discovered that many of them were misfits like me. Maybe I had finally found a place I'd fit in." Until then, fitting in had seemed impossible. While he might have been brilliant with machines, he had had to learn, the hard way, how to deliver a simple social response. As a child, he writes:
"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.' . . .
"Kids . . . got mad or frustrated. . . .
"How do normal kids figure [out how to converse]? They learn it from seeing how other kids react to their words, something my brain is not wired to do. 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." It didn't help that home life had become nightmarish. His mother was in and out of psychiatric hospitals, and his father was an abusive alcoholic. In fact, these two are already public figures, thanks to Robison's brother, author Augusten Burroughs (who was Chris Robison before renaming himself). Burroughs' memoir "Running With Scissors" recounts their family's life further along in its decay; Robison was born eight years before Burroughs. Any doubts as to the veracity of Burroughs' dire depiction of Mom and Dad are quelled by Robison's book, which paints an equally ugly portrait: Their father putting out a cigarette by mashing it into toddler Burroughs' forehead as he sat on his lap is but one cringe-inducing example.
At the same time, you almost have to feel a twinge of sympathy for this messed-up couple. How many rotten parents end up with not one, but two children writing memoirs, both published by major houses, and at least one, so far, going on to become a best seller and a major motion picture? Talk about revenge.
But "Look Me in the Eye" (a demand the young Robison heard countless times: "I don't really understand why it's considered normal to stare at someone's eyeballs.") is a very different book from "Running With Scissors." Burroughs' story is about surviving a crazy world and coming out OK. Robison's world was almost as nuts -- he never lived with Burroughs' adopted Finch family -- but the challenges presented by the outside world were magnified exponentially by Robison's own internal, Aspergian world.
Burroughs is a writer by profession, with the cache of devices that come with it, while his brother is not. Robison seems likable, honest and completely free of guile, qualities well served by writing that is lean, powerful in its descriptive accuracy and engaging in its understated humor.
It is also emotionally gripping. The chapter "Married Life" counters the notion that those with autism -- high-functioning Aspergians included -- can't love or be affectionate. Robison opens a window into this most intimate of endeavors and helps us see that human contact, warmth and love are as important to autistics as to anyone else, even if attaining them might be extraordinarily difficult.
Marriage is extremely unlikely for my own adolescent autistic son, Ben, who occupies the opposite end of the autism spectrum from Robison. Ben will live his entire life at the mercy of others looking out for him, and though writing his name presents a challenge as daunting as Robison might have found in producing an entire book, the areas of overlap between them are huge. In fact, any parent of an autistic person, no matter how severe, will see their own child in Robison.
When he describes how his wife sleeps with a leg on top of his body, providing pressure that lets him relax and sleep like he never had before, it is like seeing into Ben's need for the "squeezes" he wants when he's feeling upset or anxious. Robison, intentionally or not, is speaking for Ben and thousands of others like him who cannot express themselves beyond a few words.
When we refer to someone's humanity, it is linked with empathy -- how we relate to and treat others. Robison's story suggests that it is the "normal" world that tends to act without empathy toward autistics. Through ignorance alone, we -- "normal" non-autistics -- have far more power to bring pain to autistics than autistics have over the rest of us. It is still much easier to learn to understand the autistic world than it is for autistics struggling against their very nature to grasp us. It is why the burden must also be ours to try to understand them.
We have the easy part, and it helps that Robison is a great guide.
Chicago psychologist David Royko has been clinical director of the Marriage and Family Counseling Service at Cook County Circuit Court since 1994. He is the author of the book "Voices of Children of Divorce," and he and his wife are the parents of twin teenage boys, one of whom is autistic.
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