The head of NBC is donating more than $2 million to a Baltimore research institute to do something innovative: listen and learn from the parents of children who have autism.
Bob and Suzanne Wright's organization, Autism Speaks, is giving $2.3 million to the Kennedy Krieger Institute to fund the first year of development of an autism database that eventually will connect parents, educators and researchers. The idea: Through an open, interactive process, those participating will be able to share information, be part of ongoing studies and look for clues to causes and treatments for autism spectrum disorders, which now affect 1 in every 166 U.S. children.
The Wrights' involvement follows the diagnosis of a grandson with autism. Wright, chairman and CEO of NBC Universal and vice chair of General Electric, founded Autism Speaks (www.autismspeaks.org) with his wife last February.
A number of parents' groups already have made pioneering use of the Internet to trade information on treatments and push for more research into the disorder, so in a sense the Wrights are taking a page from that digital playbook. But many of those same parents have complained that researchers tend to reject their eyewitness experiences because they don't meet scientific standards.
What's more, the range of services that children with autism require -- from speech therapy to behavioral approaches to special education to medical treatment -- is often poorly coordinated.
"I think there are only two people who know what's going on with these kids, and those are the parents in these families," Dr. Gary Goldstein, president of Kennedy Krieger, told Age of Autism. The institute is a leading research and treatment center for children with developmental disorders from autism to spinal-cord injuries.
"What we are going to do is have an engaging, interactive Web site that asks you not only for registration information but keeps asking you -- symptoms, what you're doing with the child, what it's costing you to do this, how hard is it to find these services."
That will allow parents, for example, to see what other parents are doing for sleep problems that often are part of autism. Researchers could look at the same data to study whether some approaches seem more effective.
"There would be a matching service where you'd be asked, 'Is it OK for a researcher to contact you by e-mail?'"
Wright's group pledged to help the effort for the next three years, with Dr. Paul Law of the Kennedy Krieger Institute in charge of the project. Parental and scientific advisory boards will help guide the Web site, which likely will be launched in about a year.
"Our expectation is that, by creating a unique network of research scientists and families, the database will become an unprecedented source of information that will dramatically increase our knowledge and understanding of autism spectrum disorders," Law said.