The Autism News | English


Neuroscientist Kevin Pelphrey has earned a Ph.D., a long list of awards and million-dollar grants from the National Institutes of Health.

None of that impresses his 6-year-old son, Kenneth.

” ‘Dad,’ he says, ‘why haven’t you cured autism yet?’ “

Young Kenneth has good reason to be impatient — and unusually curious about his father’s work, says Pelphrey, one of the country’s leading autism researchers. Two of Pelphrey’s three children — Kenneth’s big sister, Frances, and little brother, Lowell — have been diagnosed with autism-spectrum disorders.

“I’d really like to cure autism and be out of a job,” says Pelphrey, an associate professor of child psychiatry at the Yale School of Medicine’s Child Study Center. “I wish I had more ideas faster.”

Pelphrey is one of a handful of leading autism scientists who also have children with the disorder. Autism-spectrum disorders, which cause impairments in communication and socializing, as well as repetitive behaviors, now strike one in 88 children, or more than 1 million in all, according to a new report from the Centers for Disease Control and Prevention.

High-functioning autistic adults are also contributing to the study of autism. In an essay in the journal Nature, University of Montreal psychiatry professor Laurent Mottron singled out the work of a self-taught researcher with autism, Michelle Dawson, with whom he has co-written 13 papers and several book chapters.

Families, of course, have a long history of rallying to the aid of their children, using whatever talents they possess. Most of the major non-profits funding autism research — including the Simons Foundation, Autism Speaks and the Autism Science Foundation — were founded by the parents or grandparents of people with autism.

“It’s definitely why I do what I do,” says Edwin Cook, a professor of psychiatry at the University of Illinois-Chicago College of Medicine, whose autistic brother died in 1989 at age 28. He’s now studying genes related to autism, as well as helping lead advanced clinical trials of a drug to treat social withdrawal in autism.

“I’ll die not knowing what I wanted to, but hopefully I will have contributed a little bit along the way,” he says.

Ricardo Dolmetsch, an associate professor of neurobiology at Stanford University, says his son’s autism diagnosis has changed his personal and professional lives.

A decade ago, Dolmetsch was working in biophysics. He changed fields when his son, now 9, was diagnosed. Transforming the focus of his research, he says, was part of the “phases of grief” parents often undergo when faced with autism. After overcoming their initial denial of their son’s condition, he and his wife felt compelled to “leave no stone unturned,” Dolmetsch says.

“It was very traumatic,” he says. “We had to change the direction of my lab. We had no funding. We had no track record. But it’s motivating for me and for my lab. There is nothing like working for a cause. It’s why we do what we do.”

Dolmetsch’s work has been singled out by Thomas Insel, director of the National Institutes of Mental Health, as a “game-changer” in autism. To help scientists study the autistic brain — a notoriously difficult task, given that doctors can’t routinely biopsy the brain, as they might a colon tumor — Dolmetsch found a way to “create” brain cells in a lab dish by transforming skin cells of autistic children into stem cells, then back into neurons, or brain cells.

A challenge at home, too

This work was made more difficult, Dolmetsch says, by the fact that caring for a child with a disability is a full-time job. Although his wife, neurobiologist Asha Nigh, supports his research through managing projects and writing grant proposals, she has put her own scientific career on hold so she can care for their son and his brother, age 7.

USA Today News

Please share your reaction! Give your opinion by filling out the form below.

Share this news with friends, family, or colleagues by clicking on the shortcuts below: