Autistic Ph.D. student at UCLA wants to improve lives of people with autism

From The Daily Bruin at UCLA:

Steven Kapp (pictured) stared intently at the ground before him as he talked, avoiding eye contact and choosing his words carefully.

“It’s easier for me to concentrate if I’m looking at something that’s not moving,” he said.

He had always known he was different, but didn’t know why. The signs were there from infancy: repetitive bouncing for hours in the baby jumper, an intense interest in animals and distress with unfamiliar people or commotion.

Elementary school brought teasing from his peers and a range of therapies to help Kapp work on speech, emotions, coordination and coping with rougher textures. Friendships were a mystery, only growing more difficult with time. Kapp would identify someone as his best friend, but his peer wouldn’t reciprocate at the same level. Despite opinions to the contrary, he was trying hard to improve.

Glasses in first grade led to the epithet “four eyes,” while the teasing harped more on his personality as Kapp entered middle school. To compensate, he poured extra effort into his schoolwork, excelling despite expectations.

“It was a way for me to feel like I had control over something,” he said.

After multiple visits to what is now the UCLA Semel Institute for Neuroscience and Human Behavior, the diagnosis was in: Asperger’s syndrome.

Kapp’s mother broke the news to her then 13-year-old son.

“She tried to explain that my brain was wired differently,” he said. “I think that’s a really good way of putting it.”

Eleven years later, Kapp is back at UCLA as a doctoral student in psychological studies in education. His goal is to become a professor and research ways to improve the quality of life and adaptive skills of people with autism.

“It was a life-changing experience to now have a more neurological explanation that confirmed some of what I had been saying to family and others over the years,” he said, referring to his diagnosis.

“I think I understood what I say today that disability doesn’t necessarily mean inability.”

What’s in a name?
Nobody knows the cause of autism or Asperger’s, though many suspect that genetics are involved. Diagnosis is therefore based on external behavior, leaving the line between the two rather hazy.

Both are developmental disorders characterized by impairment in social interaction as well as repetitive and restricted behavior such as adhering to rituals, lining up objects or self-stimulation with clapping or rocking.

The key difference is that people with autism demonstrate language delays, and are thus often diagnosed before age 3, said Dr. Shafali Jeste, an assistant professor in psychiatry and neurology.

Asperger’s has relatively positive association with intelligence, and some individuals may demonstrate savant-like knowledge of an area. But Asperger’s is sometimes indistinguishable from high-functioning autism, and diagnosis can vary depending on the family, physician and school district, said Connie Kasari, a professor in education and psychiatry.

As a result, Asperger’s could soon disappear from psychiatric vocabulary.

A proposal currently under debate would eliminate Asperger’s as a separate diagnosis and subsume it under “autism spectrum disorder” in the fifth edition of the Diagnostic and Statistical Manual of Mental Health Disorders, due out in May 2013.

“Autism truly is a spectrum, and it’s not a linear spectrum,” Kapp said. “People can have strengths and weaknesses that might be qualitatively different too in various combinations and degrees.”
But not everyone is completely on board with the changes.

“I think that the scientist in me understands the need to simplify the diagnosis,” said Dr. Elizabeth Laugeson, director of The Help Group – UCLA Autism Research Alliance. “The advocate in me has a little concern. … For many people, having a diagnosis of Asperger’s disorder is very much linked to their self-identity.”

Treating, not curing
The prevalence of autism has increased rapidly in recent years, with about one in 110 children currently diagnosed with autism spectrum disorder in the United States, Laugeson said.
Autism is four times more common in boys than girls, and Asperger’s nine times more common, she added.

For those with Asperger’s, Laugeson said treatments usually focus on decoding the social world. Etiquette that may come as second nature to “neurotypicals,” or non-autistic people, often needs to be outlined for situations such as holding a balanced conversation, using appropriate humor, having get-togethers and dealing with peer conflict, she said.

The UCLA Semel Institute offers a bevy of intervention programs for children, teens and adults, including the Center for Autism Research and Treatment as well as the Program for the Education and Enrichment of Relationship Skills.

But Kapp, Kasari and Laugeson stressed that treatment should help autistic people develop the skills they need rather than change who they are fundamentally.

Kapp takes pride in co-directing the UCLA/L.A. chapter of the Autistic Self Advocacy Network. He prefers to say, “I am autistic” rather than “I have Asperger’s” because the statement is more empowering.

His concerns are the same as those of his peers – asking questions in class, going to office hours, finding a quiet study space, managing his time, making friends. Like most autistic people, Kapp said he thrives with structure and predictability. The Culver City native now lives with his parents, after living in a single dorm room during his undergraduate studies at USC.

Though he uses his resources, Kapp said he would like to see colleges provide more accommodations such as social coaches or tips from socially successful peers.

Kapp stressed that the same differences that may be restrictive in one context can be a strength in another. For him, recognizing neurodiversity both addresses and celebrates individual differences.

“Parents usually are just saying they want their child to be happy, healthy, successful, but you can be all those things and still be autistic,” he said.