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.”
The Wrights were overjoyed when Christian arrived six-and-a-half years ago, less than two weeks before September 11. For the baby’s first two months, he and his parents stayed with the Wrights at their home in Southport, and later visited often. “He was just the pride of our lives,” Suzanne says of the boy. “He loved to come to my house. I loved to take care of him and babysit for him.”
Becoming grandparents was a gift that topped a life already rich with blessings, which included three children (Katie, Christopher and Maggie); Bob’s tremendous career success; Suzanne’s commitment to Make A Wish and the Westport Country Playhouse; and numerous rewarding friendships. Christian’s early days were blissful. The Wrights have home videos from his first year or so that they can no longer bear to watch, including one scene of the excited toddler rushing into their house with open arms to greet Grandma.
Suzanne speaks of his progress back then with joy. “It was pretty amazing because he started talking so early,” she remembers. “It was really quite remarkable. I was always amazed when I would put him in the car. He would say, ‘Truck,’ ‘dump truck,’ ‘telephone truck.’ He knew every truck there was.”
Signs that something was wrong, however, were evident when Christian was as young as one-and-a-half years old, she says, then grew worse. By age two, the boy was often anxious and afraid. His tantrums were severe. And he was plagued with gastrointestinal and immunity issues.
Still, doctors assured his parents that this was just a phase, that the family’s recent move from Greenwich to New Canaan and then the birth of a second baby, a son named Mattias, were probably upsetting the older boy. Give it time, they advised.
Yet his verbal skills were getting worse. When Christian finally stopped speaking altogether, his parents brought him to Columbia University Medical Center, where doctors put him through a battery of tests over several days.
The Wrights never expected to hear that Christian had autism spectrum disorder, so named because the manifestations of the condition are wide-ranging, from mild to severe. And though Bob and Suzanne were worldly, well-informed people, they knew hardly anything about the condition. When Suzanne heard the word “autism” in relation to her grandson, in fact, her thoughts went back to the well-known movie that starred Dustin Hoffman as an autistic savant. “I’m thinking, Rain Man?” she says. “He’s not Rain Man.”
Even with a diagnosis to attach to the child’s problems, the doctors had no solutions. The family was sent off to fend for itself. In the meantime, Christian seemed to be slipping away. “I watched our little guy just absolutely melt down,” says Bob of the weeks following the diagnosis. “He lost all of his cognitive abilities in a period of, I don’t know, about three months, and it was just hard to believe. It was like somebody had shot him with a ray gun or something.”
Katie Wright and Suzanne urgently searched for help. One-on-one therapy could be beneficial, they learned, but every therapist they called was booked solid. And though Christian did receive some care, through Easter Seals, it was far less than he needed. When Suzanne talks about seeking therapy, frustration and despair resurface in her voice. “Terrible!” she exclaims. “I had to beg people to come.”
Equally maddening was the doctors’ failure to diagnose Christian’s problem early, when intervention would have helped most. And though Suzanne’s anger is dissipating with the passage of time, she believes Christian lost up to nine months of treatment, which would have made a world of difference.
Ultimately, the boy and his family moved to New York, where he was enrolled in the McCarton School, which offers a multi-treatment approach for youngsters with autism and where he has made some progress.
The Wrights knew they had to take action, not just for Christian but also for the many families out there — some 2 million people in the United States have autism — who were struggling with similar problems. “I could do very little for him,” Suzanne says. “But I could do a lot about autism. I could make the country stand up and look at the terrible thing that’s happening.”
Kathy Roberts, the mother of a daughter with autism and founder of Giant Steps, a Fairfield-based school for such children, had no idea who Suzanne was when she first called seeking advice about Christian. Truth be told, her call was much like countless others that had come over the years from worried parents and grandparents.
“We were talking a couple of times a week, but this isn’t unusual,” Kathy recalls. “So anyway, a couple of months went by and all of a sudden one day I get this huge bouquet of flowers, and I knew this woman’s name was Suzanne and I knew her phone number, but that’s all I knew.
“So I called her, and talk about prophetic. I thanked her for the flowers, but assured her that she really didn’t need to send them because I was sure that someday she would be helping some other family the way I was helping her.”
Today, Kathy chuckles about that prediction, and that this same grandmother would, with her husband, start the largest group in the world dedicated to helping families affected by autism.
With the founding of Autism Speaks, Bob and Suzanne gave the autism community what it had long lacked, a big national organization and a big national voice. Hundreds of groups were out there, many of them grassroots efforts that were started by parents of autistic children, each with its own agenda and limits in funding and scope. “Nobody until Autism Speaks has had the resources and the bandwidth to comprehensively start going after the issue,” says Roithmayr.
Spreading the word about the disorder was the first step, and a perfect fit given Bob’s job. In just a few years, autism awareness would reach new heights, from special reports on NBC and its sister cable stations, to Advertising Council public service announcements, to benefit concerts with celebrities like Jerry Seinfeld, Paul Simon, Bill Cosby and Toni Braxton. A documentary by Autism Speaks, entitled Autism Every Day, was presented at the Sundance Film Festival. Autism awareness even made it to boxes of Rice Krispies. This was a massive effort to bring the condition to the forefront of American consciousness.
An integral part of the foundation, of course, is fund-raising. What began with a $25 million donation from Bernie Marcus, cofounder of Home Depot and whose son is autistic, has led to the raising of $100 million so far, with hopes of reaching that same figure annually.
As awareness spreads, people begin to connect, imagining the condition affecting their lives in a personal, direct way. “All of our children have grown up together,” says Suzanne, who has been involved with local charities for years. “And so many of the women that are my age were so horrified, because they knew Christian. They’ve seen Christian and then to have this happen to me. They’re all saying, ‘Oh, my God, could this happen to me and my family?’ And guess what the answer is, yeah, it can.”
Bob and Suzanne, who were instrumental in raising the millions needed to renovate the Westport Country Playhouse, saw the bread they cast upon the water come back to them: The 2006 performance of A Christmas Carol benefited Autism Speaks.
Bob and Suzanne complement one another. She is brimming with energy and emotion, and when she tells Christian’s story, though she has told it many times, she becomes tearful and pauses. Bob, by contrast, is businesslike. “He is the business acumen of Autism Speaks,” says Roithmayr. “She is the passion. And that’s not to say that she does not have business acumen, because she does, or that he does not have passion, because he does.”
Philip H. Geier Jr., former head of the Interpublic Group of Companies and a current board member of Autism Speaks, says people who know the Wrights best are well aware of how caring they have always been. Geier, who has a home in New Canaan, tells of how Bob visited him the day after he underwent a heart transplant. Wright had just returned from Washington, DC, and rushed straight to the older man’s hospital bed before even going home. “But I’m just one person,” Geier says. “He’s always been there for people. He’s a very unusual person because he cares so much more about other people than himself.”
The Wrights, Geier continues, are a formidable pair when it comes to pursuing their goals for Autism Speaks, from lobbying government officials to fundraising. “Bob has a great ability because he is so well-known and so well liked,” Geier says. “But well liked counts more than well- known, believe me.
“And Suzanne is unbelievable. If she’s got you one on one, you’re dead.”
In many ways, Autism Speaks has evolved from Bob’s background as a lawyer and businessman. His modus operandi is to hire the best people available. So it was no surprise to those who know him that when a headhunter failed to lure the highly regarded Roithmayr, Bob called him at home and, eventually, with the help of Suzanne, won him over. Similarly, Bob drew on his reputation and experience —does it get more high-powered than spearheading GE’s $14 billion acquisition of Vivendi Universal Entertainment? — to merge Autism Speaks with three other groups: Autism Coalition for Research and Education, National Alliance for Autism Research, and Cure Autism Now. And though such agreements are rare in the not-for-profit world, those mergers created an essential unified effort.
Progress is being made. The Wrights were encouraged last fall, for example, when the American Academy of Pediatrics recommended early screening for autism in all children and that treatment begin as soon as the disorder is suspected.
Breakthroughs in what scientists are learning about cell biology and the human genome are also promising. “The next wave of cell biology is going to help with Alzheimer’s, Parkinson’s and autism, which are sort of distant cousins,” Bob explains. “I think that will give us some real fundamental understanding of what we’re dealing with here. And therapies will arise. Clinical work will be done to try to isolate people that have certain conditions. We’re starting to get therapies that are more focused on your particular type of autism or your symptom of autism.”
Despite the Wrights’ optimism, there have also been bumps in the road. Relations have been strained between Bob and daughter Katie, who declined to be interviewed for this article. Katie, Christian’s mother, has said that Thimersol, a preservative in mercury-based vaccines, causes autism and defends alternative treatments, which she says have benefited Christian. She has also criticized Autism Speaks for not supporting more families who believe likewise.
Her parents and the organization are reserving judgment on vaccines, saying they have yet to see scientific proof that they are behind the rise in autism. “We’re the 500-pound gorilla,” says Bob, “and we’re doing all of this research work and worrying about genetics, and she’s saying, ‘I’ve got a little sick boy here, and I’m only interested in dealing with him right now.’ That’s okay. I understand that.”
The family’s differences reflect the controversies that divide the autism community. Because Autism Speaks is big and getting bigger, the organization and its founders are sometimes targets of frustrated and angry individuals, especially on Internet blogs. Vaccines, treatment methods, even the goal of wiping out the condition is vehemently denounced by some with autism who take its potential eradication as a personal attack.
As for Christian, the Wrights hope his medical problem can be brought under control. But his autoimmune issues are serious and pose challenges. “He’s got tremendous handicaps to deal with,” says Bob. “So I don’t know. We’ll do everything we can to help him, but that may not be enough. And for the Christians that are out there that don’t have the access to the things that our guy does, well, that’s why I do this.”