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LENGTHS TO WHICH PARENTS OF AUTISTIC KIDS WILL GO:
Quizzing junior accountants at the NIH // Scouring scientific papers // Raising millions of dollars for research // Creating a genetic database to figure out the cause —because no one else had.

You Can Hurry Science

By Allan Coukell // Photographs by Michael Edwards // Winter 2006
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Jon and Dov Shestack

The quest is personal for Cure Autism Now co-founder Jon Shestack, whose daily struggle to connect with 13 year-old son Dov only strengthens his resolve to quicken the pace of research.

J on Shestack remembers shouting, throwing a lamp across the room, arguing with his health insurer and “feeling like a victim.” His wife, Portia Iversen, recalls an earlier moment: walking into the kitchen of their Los Angeles home to find their one-year-old son, Dov, staring at shadows on the floor, more interested in the play of light than in the sight of his mother. “‘Dov seems to be slipping into his own world,’” she remembers telling her husband. “And as I said it, I got a chill.”

As Dov’s second birthday approached, he became increasingly withdrawn. He stopped answering to his name and lost his few words of speech. He developed repetitive flapping and rocking movements that seemed beyond his control. The formal diagnosis—“Your son is autistic”—came by phone, Shestack recalls, on the Friday of Memorial Day weekend, 1994. “There is nothing you can do,” the doctor said.

Even so, Shestack and Iversen tried behavior modification, picture exchange, gluten-free diets—nothing seemed to have much effect. By the time her son was three, Iversen says, the therapists were starting to give up on him. “I was told it was unfixable, but I was given no good reason why.”

She and Shestack began looking into autism research and were surprised by what they found—or didn’t find. Neither knew much about science: Shestack was a Hollywood producer then starting work on the thriller Air Force One; Iversen was a set designer turned writer for television sitcoms. But they spent thousands of dollars retrieving articles from the University of California at Los Angeles library and contacting the few researchers in the field.

To figure out how much the government was spending on research, Shestack would rise early to telephone junior accountants at the National Institutes of Health (NIH) in Bethesda, Md., who would help him sift through the numbers. His final calculation: $5 million a year. Shestack and Iversen hired an independent research analyst who estimated the cost of autism in the United States—for drugs, doctors’ visits, institutional care and related expenses—at roughly $13 billion a year. Yet despite that human and monetary toll, the disease was being all but ignored.

“I had never thought that could happen,” Iversen says. “I just expected there was a system, that every disease had government funding and somebody working to cure it.” Adds Shestack: “We felt the science community had utterly failed autism.”

Autism was first described in 1943 by Leo Kanner, a child psychiatrist at Johns Hopkins Hospital in Baltimore. Later researchers recognized the syndrome as a brain disorder covering a spectrum of diagnoses and symptoms, ranging from severe withdrawal and mental retardation to mild impairments in children who can still attend school and sometimes college. Near the high-functioning end of the spectrum is Asperger’s syndrome, in which children develop language normally but have impaired social interactions. A tiny fraction of those affected develop extraordinary math, music or other skills.

Initially the illness was blamed on parents, especially “refrigerator mothers,” so named because doctors considered them distant and unloving. That notion was abandoned after studies in twins showed that autism is strongly genetic. If one identical twin is autistic, there is a 90% chance the other twin will be affected by either autism or autistic traits (males make up more than three-quarters of people with autism). Among nonidentical twins, the concordance is only 10%. That makes the genetic influence in autism more powerful than it is for any other psychiatric condition.

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Akin to Autism

A young child has problems socializing, concentrating and understanding language—is she autistic? Perhaps. But she could also be suffering from one of the other pervasive developmental disorders.

Can Parents Push Too Hard?

Is there a downside to lobbying for research funding for specific diseases?

The Autism Gene

Researchers have found the first strong genetic cause to be specifically associated with autism.

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hed-dossier

1. “Molecular Genetics of Autism Spectrum Disorder,” by Jeremy Veenstra-VanderWeele and Edwin Cook, Molecular Psychiatry, Sept. 2004. A well-referenced overview of the search for autism genes.

2. “Why the Frontal Cortex in Autism Might Be Talking Only to Itself: Local Over-Connectivity but Long-Distance Disconnection,” by Eric Courchesne and Karen Pierce, Current Opinion in Neurobiology, March 2005. A highly readable review that weaves together the strands of research on brain size, structure, function and pathology in autism.

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