This article was reprinted from the August 20, 2009 issue of The Inquirer and Mirror with permission from the newspaper. In the same issue, the paper profiled Kim Horyn, director of the Autism Speaks Nantucket Resource Center.
Autism diagnosis turns Wrights into crusaders against a global health crisis
By Marianne R. Stanton
Five years ago Bob and Suzanne Wright learned that
their grandson Christian had autism. That diagnosis set them on a path that would eventually change not only their lives, but the lives of hundreds of thousands of children and their families across the world.
Bob Wright, a longtime summer resident, was nearing the end of a stellar career as president and CEO of NBC Universal, where he transformed the media company from a broadcast network into a diversified global media company. Little did he know that he was about to take his valuable years of experience in the corporate world to lead the charge battling one of the biggest public-health problems that children and families are facing today: autism.
Autism is a neurobiological disorder that usually lasts throughout a person's lifetime. Sadly, it is a disease that is growing with 1 in 150 children diagnosed as on the autism spectrum, up from 1 in 165 children diagnosed a few years ago. Boys are at higher risk.
“Christian was diagnosed in the spring of 2004, after we saw signs of autism over the winter of 2003, when he was 18 months old,” said Suzanne Wright, Christian's grandmother, or “Mormor,” as her grandkids call her.
After a year of navigating the health-care system with their grandson and his parents, and experiencing the frustration at the lack of services for families coping with autism, the Wrights knew they had to do something, and felt fortunate they were in a position to do so.
“We didn't volunteer. We were drafted for this cause,” Bob Wright has said in explaining their involvement.
During 2004 the Wrights invested their personal funds and assembled a team to create a new nonprofit designed to raise awareness of the disease that starts in childhood. Their goal was to provide information and resources for families coping with the unknown and provide assistance in navigating what were often murky waters. At the same time the Wrights wanted to raise funding for research about autism to try to learn what causes it and search for a cure. In February 2005 they announced the formation of Autism Speaks on the “Today” show, and the ball started rolling from there.
One of the first things the media-savvy Bob Wright did was approach the National Ad Council about creating a public-service campaign to raise awareness about autism. His efforts resulted in a multi-year, multi-media campaign that has resulted in more than $200 million in donated print, broadcast and online advertising and is credited with raising awareness of autism by more than 43 percent.
“Today we know this about autism,” said Bob Wright from his Medouie Creek home. “We know that the diagnosis fully presents itself by age 3. A child who is 5 or 6 doesn't suddenly ‘get' autism, and you can't ‘catch' autism. And we also know that early diagnosis is crucial. If kids are diagnosed early and receive behavioral, occupational and speech therapy, then 50 percent of those kids will be able to matriculate in public schools at age level. That's significant. But we still don't know how to cure it.”
The Autism Speaks website, www.autismspeaks.org, provides a host of information on understanding autism, what to do about it and treatment. A new feature of the site is a video glossary which depicts, on a split screen, children between the ages of 1 and 3. One screen shows a child with autism, the other shows a child without, both of them doing the same thing. The differences are obvious and the video glossary provides a rough diagnostic tool for parents who might be questioning whether to take their child for further testing.
That early diagnosis is the hardest. Suzanne Wright remembers the moment when she sat down with her daughter.
Today the Wrights are working hard on autism insurance-reform legislation and have been successful in getting 15 states to pass laws that provide insurance coverage for children with autism. In most states, insurance companies are not required to cover medically-necessary, evidence-based autism therapies. New Jersey was the most recent state to provide coverage. Massachusetts still doesn't provide coverage, but the Wrights are optimistic that eventually coverage will be provided for all with President Barack Obama's support. To see how state and national advocacy efforts are progressing, visit www.Autism Votes.org.
“This is not a partisan issue,” said Bob Wright. “We have broad support from Democrats and Republicans alike.”
Bob and Suzanne Wright have also taken their crusade across the Atlantic to Europe and the Middle East and in doing so have given a voice to the millions of children worldwide who are undiagnosed, misunderstood and seeking help.
The awareness of autism as a global health issue has spread thanks to the work of Autism Speaks and Bob and Suzanne Wright. Last year, April 2 was declared World Autism Awareness Day by the United Nations, one of only three declared world health-awareness days.
The Wrights were in Qatar and Saudi Arabia this year meeting with members of the royal family about autism awareness. They also traveled to London to meet with Sarah Brown at 10 Downing Street and Bob Wright met with conservatives and liberals in both the House of Lords and House of Commons.
Last year Autism Speaks convened a meeting of the world's first ladies to talk about the growing global autism crisis, and has another such event planned for this fall on Sept. 22.
This week, however, the Wrights are focusing on the Nantucket Walk Now For Autism, set for Saturday, and the arrival of their family members who will participate in the walk, including Christian, who turns 8 this month.
“We now have 80 walks across the country, and they are so great and mean so much to the families dealing with autism,” said Suzanne Wright. “We who have autistic children can't do a lot of things other families do, but we can walk together. They're not isolated any more because everyone is walking with them. We're out there for a day and it's all about them, and it's a wonderful feeling.”
In recent weeks, The Inquirer and Mirror also published stories on the top Nantucket Walk Now for Autism Speaks fundraiser and on fundraising efforts by Nantucket High School sports captains.