In the world of autism, parents play a crucial role. They not only care for their children, but they’ve been instrumental in building awareness and in raising funds.
“We'd like to say the funding (for autism research) is driven by our highest scientific ideals,” said Dr. Thomas Insel, Director of the National Institute of Mental Health. “In fact, what really helps drive the funding is to have parents who are informed and who are passionate and who are effective. And the autism community has been blessed by parent advocacy groups that have made a lot happen.”
Parent organizations like Cure Autism Now and the National Alliance for Autism Researchhave taken the lead in parent advocacy, together raising almost $50 million to support biomedical research in autism.
“Parents of autistic children are facing monumental problems, and they need answers to those problems,” said Eric London, founder of the National Alliance for Autism Research. “The medical establishment doesn't really have the answer. The educational establishment doesn't really have the answers. And so this community has come to the conclusion that we're going to have to fight until the answers are forthcoming.”
Bob Wright, chairman and CEO of NBC Universal, and his wife, Suzanne, joined this fight last fall when their grandson was diagnosed with autism. (MSNBC.COM is a joint venture of Microsoft and NBC Universal.)
“The grandparents really grieve twice,” said John Shestack, founder of Cure Autism Now. “They grieve once for their autistic grandchild who has so many challenges. And then they grieve a second time for their son or daughter who now has this challenge in their life when they thought there would just be simplicity and joy.”
The Wrights are launching a new organization, Autism Speaks, which will focus on research, treatment and education.
(CNBC special projects producer Alison Tepper-Singer contributed to this report.)