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Autism is in the news, and it’s about time. On Monday, the Centers for Disease Control launched a new education initiative designed to educate parents of young children about the early signs of developmental disorders such as autism. Among mainstream print media, The New York Times is following this story closely, publishing more than two dozen articles on autism in the past six months. Newsweek has made autism the cover story of its latest issue. NBC News has devoted significant airtime this week to exploring every aspect of this disorder, with reports on “Today,” “Nightly News,” CNBC, MSNBC, Telemundo, the owned NBC stations, as well as on this news Web site. Autism has also been featured recently in entertainment shows such as “Without a Trace” and “Scrubs.”
Why the flurry of interest? Here’s a clue: 1 in 166. That’s the chance a baby born today will have autism. This represents a dramatic increase from a decade ago, when experts estimated the incidence rate to be 1 in 2,500.
What explains this sudden increase? No one knows for sure. What is clear, however, is that autism demands more public awareness, more understanding, and more funding, both private and public.
I know the people of NBC News take great pride in the work they have done this week in shedding light on the mystery of autism. I’m grateful for their efforts. I say this not only as the head of NBC Universal but also as someone who has a personal stake in this issue.
Last March, our grandson was diagnosed with autism. We have watched helplessly as an apparently normal toddler lost his ability to interact with the outside world. My wife, Suzanne, likens it to a kidnapping, as if someone has taken away the life he was meant to live. We all want nothing more than to have him back where he belongs, restored to his family.
Since the diagnosis, our family has been on a mission to learn all we could about autism, and help ensure our grandchild receives the best therapy and treatments available. Frankly, it’s been a difficult and frustrating challenge. We discovered, to our surprise, just how scarce the resources are for parents dealing with autism, and how thin the knowledge. We had so many questions, and instead of answers, we found a bewildering array of theories and guesses. We found it hard to believe that a disorder with the frequency of autism commands so little public attention and such meager resources devoted to research, compared to other, less common childhood disorders.
Autism is the most widely diagnosed developmental disability in the nation, yet autism research receives only $15 million per year from private sources, compared to more than $500 million for conditions like childhood cancers, muscular dystrophy, juvenile diabetes, and cystic fibrosis — all of which combined together are less common than autism.
To help close this gap in awareness and resources, we are announcing the launch of a new organization, Autism Speaks, devoted to educating the public about autism, facilitating and funding research, motivating private and governmental resources, and, ultimately, helping to find a cure for autism.
Autism Speaks is dedicated to helping families find answers. But neurological disorders are complex, and autism won’t yield its secrets without a struggle. One significant way Autism Speaks will help will be by spearheading the assembly of a large central database of children with autism that will provide, for the first time, the standardized medical records that researchers need to conduct accurate clinical trials. We believe this will facilitate the large-scale longitudinal studies and clinical trials that will help lead us to a cure.
Yes, I’m keeping my day job. But I also want my grandson back. So, for as long as it takes, Suzanne and I are going to be devoting whatever extra energy we can muster to helping Autism Speaks achieve its goals. Autism is a vexing puzzle. We are committed to finding the answers.
Bob Wright is the vice chairman of GE and chairman and CEO of NBC Universal, the parent company of NBC News. For more information about Autism Speaks, visit www.autismspeaks.org or call 1-888-AUTISM-5.