Autism Speaks louder

PHOTOGRAPH BY MARGARET CARROLL-BERGMAN From left: Bob and Suzanne Wright and summer residents Lou and Marjorie Susman Saturday at the Kick-off for the 3rd annual Nantucket Walk Now for Autism. The Wrights are the co-chairs of Autism Speaks and Lou Susman is President Barack Obama's nominee for the Court of St. James. The Susmans recently celebrated their 50th wedding anniversary. In any battle it helps to have an ally and for children diagnosed with autism, there could be no stronger and more devoted advocates than summer residents Bob and Suzanne Wright, cochairs of the nonprofit Autism Speaks.

The Wrights founded Autism Speaks in 2005, a year after their grandson Christian was diagnosed with autism. And, while their grandson may have sparked the flame for their involvement, the Wrights are now worldwide champions for children with autism. In May of 2008, Time listed Bob and Suzanne Wright among the country's 100 most influential people.

Autism is a complex disorder that impairs a person's ability to communicate and relate to others. No one knows what causes autism and there is no cure. Until recently autism was not covered by insurance and even now, that coverage is spotty as it is only available in a few states.

Fourteen states have passed legislation that calls for insurance to cover autism, including treatments, medications and therapies; Massachusetts is not among them.

Yet, the Wrights and thousands of families with children with autism are moving forward, one state at a time to change the law.

"Autism is draining the college funds of older children and families are taking second mortgages against their homes to pay for treatments," said Bob Wright, former chairman and CEO of NBC. "New Jersey is the 14th state we've gotten to have insurance cover autism. It's time to make the discrimination end. More children are diagnosed with autism each year than with AIDS, diabetes and cancer combined."

Although not yet passed, the federal Autism Treatment Acceleration Act "could change the dynamics for all families and relatives of children with autism," said Wright. "We feel we have the support we need from the federal government for the insurance part, we now have to rally the states."

The federal Autism Treatment Acceleration Act would also provide for early intervention and therapies to be covered by insurance.

"The average age for diagnosis is 5 years. The likelihood that a child will go through the public schools is slim with that late diagnosis. It's a 50 percent chance if diagnosed in early childhood," said Wright.

Three years ago, the Wrights started the Nantucket Walk Now for Autism. The 2007 walk raised over $340,000 and helped fund an Autism Speaks Resource Center on Nantucket that provides comprehensive resources for families, professionals and the community for the purpose of educating and increasing awareness of autism.

This year's goal for Nantucket Walk Now for Autism, to be held Saturday, August 22 at Jetties Beach, is $350,000, the same amount raised as last year's walk.

"More important than the money," said Wright, "is the walk will help create awareness. You will not be alone. We are helping families get the strength." I

For more information about the 2009 Nantucket Walk Now for Autism call 609- 228-7339 or visit www.walknowforautism. org/nantucket. For more information on the Nantucket Autism Speaks Resource Center, contact Kim Horyn at 646-341-3043.