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Vol. LXV, No. 10
May 24, 2013
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Autism Awareness
Author Robisonís Inspiring Story Educates about Aspergerís

On the front page...

John Elder Robison

John Elder Robison

“Autism made me a misfit lonely kid,” said John Elder Robison at an Apr. 17 Autism Awareness Month lecture. He spoke with such eloquence, one could easily overlook that he has Asperger’s syndrome, an autism spectrum disorder. While he is articulate and successful, Robison reminded the audience that many people with autism are not as fortunate and need help so they too can thrive.

Author of the 2007 New York Times bestseller, Look Me in the Eye: My Life with Asperger’s, Robison grew up in the 1960s before Asperger’s was commonly diagnosed. “People like me, and there are lots of us, were told we were stupid, lazy, defiant or different,” he said. “I certainly was very lonely as a child. I was a kid who never knew what to say…When you’re young, all you feel is the weight of that disability and the sting of rejection.”

Continued...

Living in social isolation, virtually friendless, he spent most of his time studying what he loved: electronics and music. “That was when the first glimmer of a gift emerged in me,” he said. This passion led him on an incredible life journey.

Robison started out repairing guitar amps for local musicians. Before long, he was building equipment for Pink Floyd’s sound company. He proudly recounts designing the smoking guitars that became a signature special effect for the rock band KISS.

Then Robison began making sound effects for popular video games. At the height of his success, he quit, questioning his skills and his colleagues’ perceptions of him. The disability that had cultivated opportunity also created the fear and vulnerability that prevented his advancement.

“It’s the perfect example of how autistic disability can take a career away from somebody,” he said. “Social disability can cripple the most articulate and seemingly smart and successful person. I could not tell how colleagues felt about me. I convinced myself they thought I was no good, even though they really held me in high regard. I left, wrongly believing I was worthless.”

“Autism brings us extreme gifts and extreme disability,” Robison said. “Our job is to figure out how to bring the gift out” and fully integrate these promising individuals into society.

“Autism brings us extreme gifts and extreme disability,” Robison said. “Our job is to figure out how to bring the gift out” and fully integrate these promising individuals into society.

He left electronics to start a luxury car repair business. One day, a customer told him about Asperger’s, that he seemed like a classic case. “For the first time, I saw I was not a loser and a reject. I was just a guy with Asperger’s.” It took years of hard work but he eventually would transform his social life. “I’m the same person I always was but the difference is I’ve learned not to do the totally weird and bizarre stuff that used to drive people away. I’ve learned to let people into my world.”

Today, Robison is a writer and public speaker who hopes to inspire young people to see beyond their disability toward a bright future. But when he gives speeches, he worries that people will hear his success story and question the need for autism funding. Not everyone is so fortunate. Many people with autism, equally bright and articulate, have lived their entire lives on disability, he said. Many can’t progress through the school system. Many end up underemployed or unemployed.

While Robison believes scientific research is important, he said a cure could be decades away; people living with Asperger’s and other autism disorders need help now. “We need to develop a broad range of therapies that address the practical problems that people with autism are living with every day.”

Robison lauded such places as Ivymount, a school in Rockville helping thousands of special needs students from ages 4 to 21, and its partnership with NIH’s Project SEARCH that provides many kids with practical experience leading to employment. But more resources are needed for children and adults. And when promising new approaches are developed—such as new talk therapies—they should be made more widely available in the community, he said.

“Autism brings us extreme gifts and extreme disability,” Robison said. “Our job is to figure out how to bring the gift out” and fully integrate these promising individuals into society.

The lecture, “Being Different: Remediating Disability While Embracing Uniqueness,” was sponsored by the interagency autism coordinating committee, a federal advisory committee that raises autism awareness; Robison is a private citizen member. His latest book, released this spring, is titled Raising Cubby: A Father and Son’s Adventures with Asperger’s, Trains, Tractors and High Explosives.

What Is Asperger’s Syndrome?

Asperger’s syndrome is a mild form of autism, characterized by social impairment, communication difficulties and repetitive, restrictive patterns of behavior. People with Asperger’s are considered the most highly functioning on the autism spectrum.

Symptoms include lack of eye contact and facial expressions; absence of back and forth conversation; trouble maintaining relationships; having fixated interests; and exhibiting repetitive and/or eccentric behaviors. The cause remains unknown. Treatment generally consists of behavioral therapy.

The condition is named for Hans Asperger, an Austrian doctor who in 1944 observed several children and documented the autistic symptoms that have come to characterize this disorder. Asperger’s observations, published in German, were largely unknown for several decades until a British doctor in 1981 published case studies of children with similar symptoms. Asperger’s became more widely studied and was classified as a distinct disease in the early 1990s.

 


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