Sunday, February 24, 2008

BOOK NOTES: ‘Look Me in the Eye’ goes inside autism

How could something as common as making eye contact be so difficult? How can people who are so brilliant with solving complex calculations, for example, be so limited in the basic everyday skills of life?

It seems ironic that the very people who suffer severely from being able to connect normally with other people may be the very ones who offer society answers to the riddle of Asperger’s Syndrome.

John Elder Robison has written a poignant, insightful, brilliant memoir titled “Look Me in the Eye: My Life with Asperger’s” (Crown, 2007). It is must reading. As the numbers of those on the autism spectrum rise dramatically, it is imperative that society pay attention to these unique people. We cannot afford to lose what they can offer.

Autism is one of the most confounding mental conditions. Little is known — yet — on what triggers the disorder. Until the 1940s, autism was not even in the medical lexicon.

The symptoms of autism, however, are difficult to ignore. The most overt symptoms are a difficulty — often severe — with social interactions, problems with verbal and nonverbal communication, and repetitive actions or obsessive fixations.These behaviors can range from mild to disabling along what researchers now understand and call autistic spectrum disorder. Asperger’s Syndrome is on the high end.

Long before the behaviors had a name, those with what we now call Asperger’s were noted as being out of the ordinary. Called odd or eccentric or quirky, some found acceptance due to one other prevalent attribute — their “genius.”

John Elder Robison speaks eloquently to both his brilliance and his heartbreaking disabilities. That he is able and willing to do so is in itself a story.

Many recall the best-selling memoir by Augusten Burroughs titled “Running with Scissors” (St. Martin’s Press, 2002). He captured the public’s attention with his tale of growing up with an insane mother, an alcoholic father, being “given” to his mother’s psychiatrist and being raised in increasingly bizarre circumstances by truly dysfunctional characters.

Yet what seemed to intrigue his readers the most — based on many letters and the predominant comments he received at book signings — was the relatively brief mention in the book about his older brother who lived with Asperger’s.

In the touching foreword to “Look Me in the Eye,” Augusten Burroughs shares how he convinced his adored older brother to tell his own story.

“ ‘You should write a memoir. About Asperger’s, about growing up not knowing what you had. A memoir where you tell all your stories. Tell everything.’

“About five minutes later, he e-mailed me a sample chapter. ‘Like this?’ was the subject line of the e-mail.

“ ‘Yes. Like that.’ “

Mr. Burroughs openly adores his “brilliant brother.” Readers will also come to recognize that John Elder Robison is truly a genius.

Those of a certain age remember the rock band Kiss and the smoking guitars and other wild special effects that took rock ‘n’ roll into new dimensions of “arena rock.”

Mr. Robison made those guitars smoke and built the sound systems that took rock high tech.

Remember Super Simon, one of the first electronic games? In the 1970s, Mr. Robison was on the research and design teams at Milton Bradley that transformed kids’ toys.

For the past 20 years, J.E. Robison Service in Amherst, Mass., has been repairing and restoring high-end automobiles (very high end) for grateful customers who come from all over the world to have John Elder Robison work his magic.

All this is self-taught. Actually, everything Mr. Robison has done in his life has been self- taught. Even learning — in his 40s — to act “normally.”
It is hard to say what aspect of this book is most fascinating — the descriptions of what Mr. Robison calls “Aspergian” behaviors or his savant abilities..

What he makes clear is that Asperger’s and savantism are linked. He has come to appreciate that, even without a high school diploma, “the knowledge I have is genuine.” He also says he has come to understand that the skills he has to design, engineer, build (anything!), “are rare.”

He writes, “There are plenty of people in the world whose lives are governed by rote and routine. Such people will never be happy dealing with me, because I don’t conform. Luckily, the world is also full of people who care about results, and those people are usually very happy with me, because my Asperger’s compels me to be the ultimate expert in whatever field of interest I choose. And with substantial knowledge, I can obtain good results.”

Mr. Robison’s story emphasizes two compelling points. The first is that Asperger’s does not need to be “fixed.”

“I’m not defective. In fact, in recent years I have started to see that we Aspergians are better than normal!”

Mr. Robison continues, “And now it seems as though scientists agree: Recent articles suggest that a touch of Asperger’s is an essential part of much creative genius.”

We think with awe about geniuses in literature or life: the calculating abilities of a “Rain Man,” the intuitive thinking of a Sherlock Holmes, the tenacity and analytical skills of a Jane Goodall.

But we also disparage the lack of social graces in these geniuses. These are people who did not play nicely in the sandbox.

Neither did John Elder Robison. In another poignantly funny account, he relates his own early childhood attempts where he failed miserably at playing nicely in a sandbox — or anywhere.

However — and this is his second important point — it was not because he didn’t want to play nicely with other kids.

He sadly remembers teachers who pointed to him, alone, with the comment, “He doesn’t want to play with others.”

He asserts, “They were dead wrong.”

Mr. Robison makes clear in his book and in interviews that “the bitterest disappointment of my life was the inability to make friends.”

It speaks to the nature of this man that he is happily married. His chapter on being a husband and father are touchingly sweet and very funny. Moreover, he has — now — a wide circle of good friends with whom he shares his interests and theirs.

He says that he has learned the difference between “eccentric and weird” and he strives to be “a nice eccentric.” He accepts that he will never be “normal,” nor does he want to be.
“Asperger’s is not a disease. It’s a way of being. There is no cure, nor is there a need for one.”

But, there is a need to expand on what is considered “normal.” Society needs to extend the range of what is considered accepted behavior.

The title of the book is a particular sticking point for Mr. Robison and others on the autistic spectrum. His explanation of why he does not look people in the eye is enlightening: He isn’t shutting the world out, he is intensely taking it all in. How much easier his life would have been if “normal” people understood just this simple difference.

As more is known about autism and Asperger’s Syndrome — much from Aspergians themselves — the better it will be for them and for those around them.

For those who want to read more about it, in a final chapter Mr. Robison provides a host of sources for information about Asperger’s and autism including support groups, books and other memoirs.

Mr. Robison’s Web site is amazing — He posts book information, photographs and his blogs. Most intriguing is an hour-long video of his first public appearance to launch the book. Mr. Robison reads passages, answers questions from the audience, and interacts with this brother who moderates the event.

He tells of having to audition to read this book for the Crown audio edition — he was accepted — and how this medium provided another breakthrough for Aspergians.

“Moms of autistics and Aspergians called and wrote (to say) my voice is distinctive” with tones and nuances that are recognizable as Asperger’s.

He says had he known the power of the spoken word, he would have insisted the audio edition not be abridged.

Now that Mr. Robison finally has a diagnosis and his own appreciation for being a “proud Aspergian,” he is very open to sharing with as many people as he can reach in order to save others with Asperger’s and their families the pain he experienced.

Joan Ruddiman, Ed.D., is the coordinator/ facilitator of the gifted and talented PRISM program at the Thomas R. Grover Middle School in the West Windsor-Plainsboro School District.

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