Stanford Medicine Newsletter Updates For the Local Community

Grappling with autism

Parents take a bigger role in research

Summer 2008

Play eases the anxiety of Bernard Dannenberg's young patient.

At age 1, Tobias Kamath was diagnosed with autism, a neuro-developmental disorder that makes it difficult for some youngsters to interact with the outside world.

Parents of children with autism often grapple with a bewildering array of questions and choices: “Did I do something to cause the disorder? Could it be genetic? What is it like to be a child with autism?”

About 300 family members, caregivers and teachers of children with autism recently gathered on the Stanford campus to get answers from the people on the other front line of the war against the difficult disorder: researchers. Organizers of the first-ever conference, Recent Advances in Autism Treatment and Research, hope that this type of summit will become an annual event.

“We really want to engage family members and caregivers of children with autism,” said Carl Feinstein, MD, the Endowed Director of Psychiatry at Lucile Packard Children’s Hospital. “We want to share with the parents what we have learned and learn from the parents what they know.”

Such openness was appreciated by many participants, who don’t usually get such access to ongoing research.

“I got so much out of it,” said Eileen Avila, the mother of Patrick, a 14-year-old boy with autism. “A lot has happened in autism research since Patrick was diagnosed, and I found the basic science very interesting. It really highlighted how few evidence-based studies have been conducted in the field, and I think it made me a lot more cautious about what I might try with Patrick.” 

Feinstein, a professor of psychiatry and behavioral sciences in Stanford’s School of Medicine, co-directs the Stanford Autism Working Group—a collaboration of physicians and researchers at Packard Children’s Hospital and Stanford School of Medicine dedicated to discovering the neurological and biological basis of autism.

“Parents are really powerful advocates for their kids,” said child psychiatrist Antonio Hardan, MD, who directs the autism and developmental disabilities clinic at Packard Children’s. “But it is very important for them to be informed about the risks and benefits of any intervention.”

Hardan, an assistant professor of psychiatry and behavioral sciences at the medical school, reviewed the safety and effectiveness of traditional and innovative medications to treat some symptoms of autism and Asperger syndrome.  He was joined by a dozen other researchers and physicians from Stanford and Packard Children’s.

“Stanford and Packard Children’s have a very broad scientific community devoted to autism research,” said child psychiatrist Joachim Hallmayer, MD, an associate professor of psychiatry and behavioral sciences at the medical school, who is studying pairs of twins to determine if there is a genetic link to autism.

Other conference topics included the medical management of autism, the basic science of autism, neurological problems associated with the disorders and how a child with autism perceives the world.

“Much of this research owes its existence to the family members of these children,” said Hallmayer. “There are some very strong parent groups that have been driving these types of investigations for years now. They push for resources, for services and for public awareness of autism and associated disorders.”

“We’re really frustrated and really motivated,” agreed another mother, who did not want to be identified. “Unlike many other more acute disorders, autism is a lifelong challenge for the entire family. The parent acts as case manager, therapist and health care provider for his or her child. We need to be informed about what’s effective and what’s not.”

Although current interventions have been somewhat helpful in treating the secondary behavioral issues, such as aggression and hyperactivity, that frequently accompany the disorder, they have been less successful at addressing the core problems of language delays, social interaction deficits and restrictive or obsessive
interests.

“It’s good to feel that progress is being made,” said Avila. “Of course I’d love to see a cure, but in the meantime you want to be treating the symptoms. If you give these children what they need, you will be astonished by the results.”

The conference was organized by the Autism Working Group, aided by the Lucile Packard Foundation for Children’s Health.

 

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