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UNC doctor shines light on autism

In an office building near the Durham County line, therapists try to figure out why a 10-year-old can't understand his teacher above the background noise most can filter out.

A few miles away in Carrboro, parents learn how to teach their autistic children using games, puzzles and toys stacked from floor to ceiling along every wall of a clinic storeroom.

And in a biomolecular research building off Manning Drive in Chapel Hill, scientists observe genetically altered mice choosing to stick to themselves, as autistic people tend to do.

Overseeing all this research, treatment and evaluation of patients is Dr. Joseph Piven, who became director of the new Carolina Institute for Developmental Disabilities last fall.

One of the world's foremost autism experts, Piven is also a shrewd organizer who makes things happen.

"The thing I've done best in my career is to bring together researchers and clinicians," Piven says. "I've always had this self-doubt, that 'What am I actually bringing to this?' I think of myself sometimes as a science broker."

Major discovery

Though Piven thrives on seeing lab scientists and therapists learn from each other, he is a formidable scientist himself, a pioneering researcher on the genetic causes of autism and related disorders. His discovery in the early 1990s that people with autism tended to have abnormally large brains has opened new lines of inquiry into the biological causes.

Fear of autism has led some families to forgo childhood vaccines, but Piven says there's no evidence of any link. He says autism is a complicated disorder with many different causes, but research could lead to highly effective treatment or even a cure for some types of autism.

"Doctor Piven's work is really on the forefront of making sure that more infants with autism become children who can live to their full potential," Dr. Tom Insel wrote in e-mail. Insel is director of the National Institute of Mental Health, which provides part of the funding for Piven's $25 million institute.

Piven never intended to be an administrator, or even a researcher.

After medical school at the University of Maryland in his home state, he took an internship in internal medicine at Good Samaritan Hospital in Phoenix. He had two weeks of vacation and decided to use one on a trip to Mexico. That left one week to squeeze in interviews for his residency.

He went home to Maryland and interviewed at his alma mater's hospital and at Johns Hopkins University, which hired him as a resident in psychiatry. He intended to work in private practice as a psychoanalyst.

For the last six months of his residency, though, he took advantage of an exchange program with London's Institute of Psychiatry, trading homes and cars with a German psychiatrist. Given his choice of assignments, Piven says, he didn't care as long as he wouldn't be on night call.

"Child psychiatry was the only thing that didn't have night call," he recalls. "It was actually sort of an accident."

This accident put him in the employ of Sir Michael Rutter, considered the world's pre-eminent expert in child psychiatry. Rutter published a landmark study in 1977 suggesting that identical twins were more likely than fraternal twins to share autistic tendencies.

This study, co-written by Johns Hopkins' Susan Folstein, pointed to a strong genetic link for autism. The finding helped to dismiss a popular but controversial assumption that autism was a social disorder caused by emotionally detached mothers.

Piven returned to Johns Hopkins for additional fellowships in child psychiatry under Folstein, advancing the genetic research into autism that his mentors had initiated.

Genetic links

Over 25 years, Piven's career has taken him to the University of Iowa then back to the East Coast for a post at UNC-Chapel Hill, where he has worked since 2000. His research was among the first to explore milder social and linguistic challenges among family members of autistic people. He was also among the first to link autism to brain size.

Piven's discoveries on the genetics of autism are "being used in large-scale genetic studies worldwide," says Geraldine Dawson, who founded the Autism Center at the University of Washington before joining Piven at UNC-CH last year.

Clayton resident Maggie Dennison's 14-month-old son, Jacob, is involved in Piven's study of brain development in younger siblings of autistic children.

Autistic babies' brains tend to show abnormal growth around their first birthdays, even if their brains were developing normally before that.

Under the auspices of the new institute's research arm, the Neurodevelopmental Disorders Research Center, Piven is trying to find out whether their non-autistic siblings show a similar trend.

"My husband and I are all for any kind of research that will help them find out why," says Dennison, who moved her family from New Jersey because they found better services in North Carolina. "Financially, we couldn't give millions of dollars, so we figured this was a way we could give back."

Families, therapists and scientists all come together under the umbrella of Piven's institute.

Besides the research group, the institute encompasses the TEACCH program, which became a global model for autism treatment after founder Eric Schopler started empowering parents to help their children, rather than blaming them, in the 1960s.

It also includes the Family Support Network, a clearinghouse directing families toward disabilities-related services inside and outside the university system; and the Clinical Center for Development and Learning, which helps families tackle complex developmental disorders.

Piven "brings a lot of people together from different fields," UNC neuroscientist Robert Peterson says. "Anytime you can get people from different disciplines together, you're more likely to come up with different ideas."

Piven's institute includes 63 investigators, all working under a variety of grants totaling $38 million a year on top of the institute's core funding.

"Joe has a great mind and is always asking new questions," Dawson says. "More than that, Joe's a generous person who finds the time to help a colleague or junior scientist."

Medical school Dean Bill Roper agrees.

"He has the personal qualities of working well with people and helping other people to be successful," Roper says.

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