Willing the World to Listen

On March 1, 2004, my family and I huddled in a room at Columbia University Medical Center, awaiting the diagnosis of my then 2-year-old grandson. A physician entered and delivered the words we most feared: “He has autism.”

Thus, our family’s journey began?a long journey, still in its early stages, yet already more exhausting and frustrating than we could have imagined possible. We watched helplessly as a delightful, apparently normal toddler lost his ability to interact with the outside world. It was as if he’d been kidnapped or somehow had his mind and spirit locked in a dark hole deep within him. For a grandmother, this has been indescribably painful to witness. For his mother and father, it is heartbreaking.

Like anyone, I responded to the diagnosis with a frantic scramble for information. What I found was profoundly discouraging. We had so many questions: Which therapies should our grandson have? How many hours? For how long? Who can provide the best guidance? Unfortunately, we found out what thousands of families already know: there are no good answers.

The Wright family – just like every family in this situation – was left to assemble a team of specialists on its own. If you have a loved one with autism, you’ll try anything that might help. The difference between us and the average family is that we didn’t have to sell our house or take on a huge burden of debt to pay for treatment. And the costs can be staggering – well out of the reach of most people, even those with generous health-insurance coverage.

I was surprised to learn that autism is the most widely diagnosed developmental disability in the nation, affecting 1 in 166 children. You’d never suspect this from the resources devoted to the disorder. According to some estimates, autism research receives only $15 million per year from private sources, compared with more than $500 million for childhood cancers, muscular dystrophy, juvenile diabetes and cystic fibrosis?which, combined, are less common than autism.

To help close this gap in awareness and resources, my husband and friends have worked over the past few months to establish a new initiative dedicated to the more than 1.7 million people with autism in this country and their families, and to the additional 24,000 children who will be diagnosed this year. The project is called Autism Speaks, and we are up and running thanks to the overwhelming response from the autism community and friends like Phil Geier, former chairman of Interpublic, and especially Bernie Marcus, the cofounder of the Home Depot. Autism speaks … and it’s time for the world to listen.

One of the main goals of Autism Speaks is to develop a central database of 10,000-plus children with autism that will provide, for the first time, the standardized medical records that researchers need to conduct accurate clinical trials. This will significantly reduce the costs of the major studies that will lead to concrete progress. At the same time, we will push for much-needed increases in public-sector and federal funding.

Every day, 66 children are diagnosed with autism. That’s nearly three per hour. Why, given the alarming incidence rate, has there been no comprehensive national effort focused on autism? Here’s one answer: such an effort must be driven by those with most at stake, the parents of autistic children. Yet these people?and I’ve met many in recent months?are exhausted. They are broke. And they are discouraged. It’s all they can do to get through the day, much less lobby Congress about funding.

Too many parents go to bed each night praying that one day their child will look them in the eye, smile and say “Mommy.” My daughter is one of them. My husband and I are launching Autism Speaks for her and for all the families stricken by this disorder. The journey that began a year ago is now a march. Many good people?perhaps you included?stand ready to join us. The pace is quickening, and God willing, we won’t stop until we have conquered autism?one child, one voice at a time.

Wright is the cofounder, with her husband, Bob, of Autism Speaks. Bob Wright is vice chairman of GE and chairman and CEO of NBC Universal. Learn more about Autism Speaks at autismspeaks.org or by calling 888-AUTISM-5.

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