A Voice for Autism

A Voice for Autism An Interview with Bob Wright and Suzanne Wright, Cofounders, Autism Speaks for the most significant children’s developmental Do you currently have enough funding disorder in the nation not being recognized. for all of the organization’s initiatives? there was a huge gap between reality and Bob: oh no. the funding is not even close perception. so awareness was the first goal. to where it needs to be. the nih’s autism-re- awareness leads to the ability to raise funds for lated funding is three tenths of 1 percent of its scientific research to improve our understand- budget – and this is the most significant child- ing of autism. third, we provide family services, hood developmental disorder. so it’s totally out dealing on a day-to-day basis with parents of of proportion. we need a push from the govern- autistic children and addressing their needs, as ment, and awareness drives a lot of that. it has well as those of adults with autism. that gets us to come from all corners, because it is a bit of a into areas like lobbying for health insurance and club. once you’re in, you get funded. if you’re educational rights. it gets us into the areas of not in, you don’t get funded. Bob Wright Suzanne Wright governmental spending, the national institute Suzanne: there’s no sense of urgency at of health [nih], the department of health and the nih. Editors’ NotE In addition to his post with human services, and legislation at the state and Bob: while they recognize the seriousness Autism Speaks, Bob Wright is Vice Chairman federal levels. we touch all of those areas. of autism, they believe other matters are more of General Electric. Formerly the CEO of NBC Suzanne: we got involved because of our urgent. for more than 20 years, Wright has received grandson, christian, who has autism. when he Suzanne: back in the ’50s, one in 3,000 numerous awards and accolades for philan- was diagnosed, it was the worst day of my life. were getting polio, and it became a national thropy and community service, most recently we found out that one in 166 children had au- health crisis, led by Franklin delano roosevelt the 2005 Humanitarian Award from the Simon tism, and i thought to myself, “why is no one and the march of dimes. we have autism Wiesenthal Center. He is a member of the board screaming about this? why hasn’t the medical speaks, and it’s not just speaking anymore – it’s of directors of the Damon Runyon Cancer Re- establishment drawn our attention to this – the roaring. our country has to do for autism what search Foundation, is on the board of gover- worst thing that’s happening to children today?” it did for polio. nors of New York-Presbyterian Hospital, and is a we then spent a week working with nbc news It has to be frustrating to not yet see the member of the Society of New York Hospital Inc. and cnbc and msnbc to tell the country about results you need and the attention autism He is a graduate of the College of the Holy Cross this epidemic. we went on the Today Show to deserves. and received his LLB degree from the University announce the creation of autism speaks. bernie Bob: we need substantial resources – prob- of Virginia School of Law. marcus, the cofounder of home depot and the ably just shy of $1 billion a year from the nih. An active philanthropist, Suzanne Wright marcus institute in atlanta – gave us $25 million that’s what it would take to have a major pro- serves on the board of directors for several or- to get the organization off the ground. gram. the good news is we have some wind ganizations, including the Make-A-Wish Foun- How has Autism Speaks addressed the behind us now, due to the lowered cost of ge- dation of Metro New York, the Laura Pels stigma associated with the disorder? netic studies. that allows cell biology work to Foun dation, the Inner-City Foundation for Bob: i think we’ve come a long way, but take place much faster and cheaper than it could Charity and Education, and the Philadelphia- people are still generally reluctant to come out have 10 years ago. alzheimer’s, parkinson’s, and based Champions of Caring Project. She is a and talk about it. it’s important that people who autism have all suffered a great deal due to the graduate and member of the board of trustees of are successful in any sphere speak out, because high cost of genetic research. but that’s getting Sarah Lawrence College. others will listen to them. so, whether you’re a a lot better. we’re also picking up some very musician, an actor, a writer, a publisher, or what- well trained and novel researchers. autism is a orgaNizatioN BriEf Autism Speaks ever, you have to get out there. so many people tricky one, because multiple genes are involved. (www.autismspeaks.org) is dedicated to increas- are hanging back, and it’s damaging. they think a quick answer isn’t going to pop out, but we’re ing awareness of autism spectrum disorders; their children, grandchildren, or other relatives starting to see motion. that said, we need finan- funding research into the causes, prevention, won’t get better any faster if they speak up. but cial support. and treatments for autism; and advocating for by getting involved they might be able to pre- Suzanne: the presidential candidates the needs of individuals with autism and their vent this from happening to other children. it are also making pledges. hillary clinton said families. The organization was founded in doesn’t seem to click with people as much as it she’ll dedicate $700 million to autism research February 2005 by Suzanne and Bob Wright, the does with more traditional diseases. if she’s elected. barack obama announced that grandparents of a child with autism. Suzanne: that said, there is progress. he would dedicate $1 billion and appoint an due in part to our efforts, the un has pro- “autism czar.” we’ll see what John mccain will What is Autism Speaks’ mission as an claimed april 2nd, in perpetuity, world autism promise. organization? awareness day [WAAD]. this is a global epi- Bob: First, it is to build awareness because, demic. it’s no longer a secret. now we have a Suzanne Wright with Sarah Jessica Parker, one of Autism Speaks when we founded autism speaks in 2005, it global stage, and we’re going to stand on that celebrity supporters (above); Suzanne Wright with her grandson was simply insufficient. nothing could account stage and have the world help us. Christian, who inspired Autism Speaks (facing page) 14 leaders posted with permission. copyright © 2008, leaders magazine, inc. volume 31, number 2 Before your grandson was diagnosed, Is autism a global issue? did you ever dream that autism would be Bob: autism knows no geographic, eco- such a part of your life? nomic, or social boundaries. we’d love to be Bob: we never dreamed we’d be doing this, able to point to an environmental issue, but we but today we have 180 full-time employees at don’t know enough about autism. most coun- autism speaks. they’re on the ground, doing re- tries have some form of a national health or- gional and local work. we want our fundraising ganization, and you’d think they’d be able to to be tied to awareness. so we have local ac- knock out the data collection process, but that tivities through which lots of people make doesn’t happen. of course, when you talk to smaller donations. that helps rid the disease people in national health organizations, they of its stigma. we need people in cheyenne, nod and tell you it’s a huge problem. wyoming, for example, to talk about autism Autism, if anything, has seemingly with their elected officials and make the disor- strengthened your family. der prominent in their region. Bob: it’s as rough on our family as it is for After working in the private sector, Bob, everyone else’s. unfortunately, autism is not a what is it like to petition corporate leaders uniter; it’s a separator. it takes so much time and to join this cause? Have they responded in attention that people become exhausted with it. positive ways? that’s why marriages break down. it’s generally Bob: if people don’t have a direct touch not the fault of either party, but the circumstances with autism, it’s hard for them to make large are challenging, particularly for the siblings. they gifts. we have a wonderful sponsor in toys ‘r’ don’t have a brother or sister like other people us. last year, they launched a fundraiser, slated do, and they have trouble explaining what the to raise $250,000, which ended up raising over problem is. it’s very difficult to handle. $1 million just from employee gifts. toys ‘r’ it’s important to say that autism is a no- us CEO Jerry storch was overwhelmed. why blame condition. if people ask me what a young wouldn’t businesses react to this epidemic? mother can do to prevent autism, there is noth- it affects women of all ages, particularly new ing i can tell them. i could not answer that ques- mothers. this is particularly a women’s issue, tion in any concrete way.

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