The Missing Piece

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At the heart of Autism Speaks, the country's largest foundation devoted to the condition, is one little boy and his grandparents, Bob and Suzanne Wright.

by stephen Sawicki

 

When Bob and Suzanne Wright’s first grandchild was finally and officially diagnosed with autism, the couple endured the first and the most jolting of a series of blows to their sensibilities.

Christian, born in the summer of 2001, had been developing well. At about nine months, he began to engage those around him. His vocabulary was growing steadily. By all appearances, he was a happy and healthy boy, and his grandparents, longtime residents of Southport, could hardly be prouder. At about eighteen months, though, something began to change. Christian had not only stopped progressing in his development; he was regressing. As time passed, the family grew more and more concerned. “He was losing his speech, and he was losing his potty training,” remembers Suzanne. “Then he started to do really weird things like tantrums and biting.”

Five different doctors told his parents, Katie Wright and Andreas Hildebrand, not to worry, that everything was fine. Five different doctors were wrong.

The truth was finally discovered —Christian had autism, which often ravages communication and social skills and for which there is no cure. “I just remember being shocked,” says Bob, who in his work life, as chairman and CEO of NBC Universal, was seldom rattled by anything. “I didn’t know much about autism. I knew it was a neurological developmental problem, but I couldn’t tell you three or four sentences beyond that.”

In the months that followed, the family was rocked again and again by the prevalence of this condition that few, even in the medical community, knew much about; by the difficulties of getting treatment; and by the devastation it wreaked on families, from the staggering divorce rate to the refusal by insurance companies to provide coverage for care.

Along with their daughter and son-in-law, the Wrights withstood each new blow. Then came a point when the grandparents emerged from their confusion and grief and decided to take action against this epidemic that at the time was afflicting one of every 166 children. (Today, the number is even more distressing: one of every 150 children). They realized they could only do so much for Christian, but, between the two of them, they could do plenty for the larger cause.

So it was that they founded the nonprofit Autism Speaks, which in three short years has vaulted to its current position as the world’s leading organization in the fight against the disorder. The group’s 2008 budget is expected to reach upwards of $70 million, the bulk of which will go toward spreading awareness, funding research, advocacy work and helping families receive much-needed services.

The couple brings to this battle a passion fueled by its own family’s heartache, a lifetime of extraordinary experience in business and charity work, and a long list of friends and contacts — the elite of the entertainment industry, the corporate world and government — to call upon for help.

Bob, who turns sixty-five in April, stepped down as chairman and CEO of NBC Universal last year. This spring, he will close out his tenure as vice chairman of the media giant’s parent company, General Electric, and officially retire. Yet, during a recent interview at his office in Rockefeller Center, he and Suzanne showed no signs of equating retirement with slowing down. Autism Speaks, of course, is the main reason. The couple’s to-do list for this fight continues to grow in intensity. They pursue a vision: that autism will ultimately go the way of polio. Every day, they give interviews, attend events and enlist individuals to help their ever-growing cause.

“There are times when I have had to say to Bob and Suzanne that it’s OK to take a day off,” says Mark Roithmayr, the organization’s president. “I have never seen anybody — and this is as a couple or individuals — put more energy toward an issue in my life.” Suzanne says of her foe, “Autism picked the wrong grandmother.”