Shedding Light on Misunderstood Asperger Syndrome

Augusten Burroughs describes his older brother, John Elder Robison, as the boy who grew up without a diagnosis. Burroughs included a chapter about his brother in his acclaimed memoir, Running With Scissors, and received so much feedback about his depiction of John that he suggested Robison himself write a book.

The result was Look Me in the Eye, a candid and often humorous book about growing up with Asperger syndrome. The book is one of many released recently that enlightens the public about the autism spectrum disorder, which became an official diagnosis not too long ago.

The defining characteristic of Asperger syndrome is an inability to identify with other people. Aspergians have trouble reading the expressions on people’s faces, and socializing does not come easily. They are often brilliant people, frequently forming obsessive fascinations with specific subjects. But the lack of empathy goes both ways—for people without Asperger syndrome, it’s hard to imagine what life might be like inside an affected mind. Now, thanks to the plethora of books and films written by and about people with Asperger, we can—in a limited sense—understand what it is like to be them.

Getting into the mind-set of an Aspergian is intriguing. By helping readers understand the peculiarities of the people discussed in Look Me in the Eye, the recent film Today’s Man, and other similar projects, public understanding and awareness of the surprisingly common syndrome has increased remarkably.

Robison wasn’t diagnosed with Asperger until late in life, when a psychiatrist friend recognized some of his symptoms. Without the knowledge that his eccentricities were caused by something quantifiable, Robison had spent his early life being told that he was a bad egg, or a sociopath, and would never amount to anything. He had trouble doing things that came naturally to others, like starting conversations, and was constantly being told—hence the title of the book—to look people in the eye. To Robison and others with Asperger, staring others in the eyes seems bizarre.
Robison takes the reader through his thought processes from as far back as childhood. He uses knowledge of the diagnosis he now has to explain why he did things like instruct his young playmates on exactly the right way to play with a truck. Behavior like that isolated him from his classmates. It mystified him at the time, but he can now understand.

Filmmaker Lizzie Gottlieb directed the documentary Today’s Man, which premiered on PBS last week, about her brother Nicky, who has Asperger syndrome. Gottlieb writes, “As a young man Nicky does not quite seem to be disabled, but is also not fully functional. It is not until Nicky is twenty that we learn of a new diagnosis called Asperger Syndrome—a high functioning form of Autism—and it seems to fit Nicky exactly.”

The film follows Nicky, now 21, as he leaves home to carve out a place for himself in the world.

Robison left home very early after dropping out of high school. He took his passion for electronics and transformed it into a successful career engineering guitars with special effects for the band KISS.

Finding out about Asperger can be an enlightening experience, as both Robison and Gottlieb have demonstrated. Upon learning about the condition, years of behavior and confusion can suddenly make complete sense, both for affected individuals and for their families and friends. The New York Times published an article last December about parents who learn more about themselves through their children’s diagnoses. One man was quoted as saying that his son’s diagnosis of high-functioning autism “provided a frame in which a whole bunch of seemingly unrelated aspects of my own life growing up fit together for the first time.”

Other books on the subject have been written as well, including Kathy Hoopmann’s Lisa and the Lacemaker: An Asperger Adventure and a collection of essays written by Aspergian adults and edited by Karen Rodman entitled Asperger’s Syndrome and Adults ... Is Anyone Listening?

This new material focusing on Asperger has a dual benefit. Besides allowing non-Aspergian people to peek into the fascinating mind of an affected person, it raises awareness about the condition. The name “Asperger syndrome” was only coined in English in 1981, and the diagnosis didn’t become common until fairly recently. Nowadays, it’s possible that someone might pick up a book about Asperger and at last find a name for their own eccentricities.

Tags: Arts & Entertainment, Ginia Sweeney, Asperger