Meet Bob Wright, the founder of Autism Speaks, on the eve of the organization’s annual Light It Up Blue campaign
f you do not know someone affected by an autism spectrum disorder now, it likely won’t be long before you do. Diagnoses are increasing exponentially each year, putting the enigmatic disorders at the forefront of an international campaign for research and understanding. Currently, the disorders don’t have cures, but there are millions of supporters raising money and awareness to provide research, resources and advocacy. On Wednesday, April 2, 2014, Ralph Lauren and thousands of other participating companies and individuals will illuminate their store, office and home windows in blue as part of Autism Speaks’ annual global awareness campaign. This occasion, called Light It Up Blue, takes place every April 2, on World Autism Awareness Day, an international observance that highlights the disorders’ vast scope and lack of prejudice—autism affects all of us.
Bob Wright, the former chairman of NBC Universal, and his wife, Suzanne, cofounded Autism Speaks in 2005, and it has since become the world’s leading autism science and advocacy organization, offering support and resources to individuals and families affected by autism. In honor of Light It Up Blue, RL Magazine sat down with Wright to learn more about autism, the growth and success of his organization and his family’s personal journey with these debilitating and mysterious disorders.
Bob Wright (seated center) and his family gather at home in summer 2012
RL Magazine: What exactly is autism, and what is Autism Speaks’ position on its increased prevalence? Bob Wright: Autism spectrum disorders cause difficulties in social interaction and communication as well as repetitive behaviors. We know there is no one cause of autism, but most cases seem to be caused by a combination of genetic and environmental factors. Obvious symptoms tend to emerge between 2 and 3 years of age, with a diagnosis typically occurring between the ages of 4 and 5. We have launched an initiative called Early Access to Care to lower the age of diagnosis to 18 months of age because early diagnosis and intervention can make a significant difference in how a child responds to treatment.
How has the public become more accommodating and supportive of these individuals?There has been an undeniable stigma associated with autism, and that is slowly going away as a result of greater awareness and understanding. In the past, the common perception was that people with autism were like the title character in Rain Man. Now, children with autism are mainstreamed in classrooms and visible in our communities. There are greater levels of inclusiveness and support, but we also hear far too often about troubling issues, like confrontations with law enforcement and incidents of bullying. There is still much work to be done to change attitudes about autism.
The University of Alabama has the ASD College Transition and Support Program to assist college students who have high-functioning autism. How will similar programs help mainstream this and future generations of autism-afflicted young adults?We are dealing with what is referred to as the autism tsunami. There are a large number of children with autism who will become adults in the coming years, and we are unprepared. Whether it is housing, job training or community integration, the services aren’t in place to handle the demand. Young adults with autism have contributions to make to our society, and many of them can even become taxpayers. We [in the support community] are helping to lead a coalition called Advancing Futures for Adults With Autism. We also are expanding our adult services in the areas of housing and employment and have created a free transition tool kit to help parents.
Your grandson’s autism diagnosis inspired you and your wife, Suzanne, to cofound Autism Speaks in 2005. Since then, how has the organization influenced and benefited you and your family?We were simply amazed by the lack of awareness and resources available to families when our grandson was diagnosed. Our daughter and son-in-law were given a devastating diagnosis and then essentially told, “Goodbye, and good luck.” There were few places to turn for services or information about how to help their child. We had no idea how big this effort would become, and we have had much success in elevating awareness, advocating for the needs of families, creating resources for families and driving scientific research. We have gotten to know families around the world who have been touched by autism, and it’s been an incredible journey.
What do you feel is Autism Speaks’ greatest accomplishment?What we do begins and ends with people with autism and their families. Our mission is centered on making life better for them, and I think Autism Speaks has done a lot in just a few years. We’ve contributed $200 million in funding to date for research to determine the causes and develop better treatments. We need more government funding for research and services and a better handle on how many people have autism in the US.
Autism Speaks has been instrumental in reforming insurance programs at the state level to help cover autism treatment. What progress has been made to elevate this to the national level?We are proud of the work we’ve done to bring autism insurance reform to 34 states, representing 75 percent of the US population, but what we really have to focus on is getting the federal government to develop a national plan. States can’t regulate the big insurance companies; only Congress has that authority. We won’t be satisfied until we’ve achieved across-the-board insurance coverage of these treatments. We need President Obama and Congress to develop a comprehensive plan to address autism. Everyone can help push for that through our advocacy program, Autism Votes, on our website, autismspeaks.org.
What does autism therapy cost, on average, for an American family?The costs for families vary widely, in large part because these therapies aren’t necessarily covered by insurance. We know that there are many families paying upwards of $60,000 per year out of pocket for ABA [applied behavior analysis] and other treatments. That’s why we are continuing to fight for across-the-board coverage for behavioral therapies. ABA is the most common therapy. We’re talking about evidence-based approaches to treating kids with autism, not experimental treatments.
April is Autism Awareness Month. How do you think the Light It Up Blue campaign has increased awareness for autism spectrum disorders?Light It Up Blue has been tremendously successful in raising awareness around the world. Last year, we had nearly 8,400 buildings and other structures in 101 countries on all seven continents illuminated in blue—everything from Ralph Lauren stores to the Empire State Building, Rockefeller Center and the Leaning Tower of Pisa. The campaign is also an effective tool for mobilizing our supporters and growing our community through social media and in local communities. We encourage people to share photos online, light their homes blue and participate in an act of kindness for someone with autism.
In what ways has Autism Speaks surpassed your vision and goals?I am continually amazed by how much has been accomplished so quickly. One thing Suzanne and I are particularly proud of is our ongoing awareness campaign with the Ad Council and BBDO, which has proved to be effective in generating attention and increasing the understanding of autism and the importance of early detection and diagnosis. It is one of the most successful campaigns in the Ad Council’s history, earning more than $400 million in donated media to date. It has gone a long way toward making autism a household word in this country. In fact, the campaign is credited with raising autism awareness by 44 percent among parents of young children.
Walk Now for Autism Speaks events take place all over the country throughout the year and are huge fund-raisers for the organization. How have these events helped raise awareness, and how can supporters help the organization if they cannot attend a walk?Our walk program is critical to the success of Autism Speaks. We have more than 100 walks across the US and Canada each year. Money raised supports research and advocacy on the national level and is invested back in the communities where it came from. In addition to the money raised, the walks are wonderful opportunities for families and communities to join together. Broad community support is critical when it comes to mental-health issues. We’ve seen a much greater appreciation for this, but there is much more to be done in areas relating to mental health in this country.
To learn more about Autism Speaks or to donate, visit autismspeaks.org. To get involved in Light It Up Blue, visit autismspeaks.org/liub.
JANE FULLER is a writer based in Dallas. Before her move to Texas, she was the director of programs and marketing for the Autism Society of Alabama.