WOMEN SHAPING HISTORY 2014
Co-Founder of Autism Speaks
What has inspired your current career path?
In 2005, our grandson Christian was diagnosed with autism and we discovered how little there was out there about autism – what steps to take, what doctors to see, what therapies to try. This lack of information was unacceptable. Here we were very informed people. Bob was CEO of NBC Universal and our daughter, Katie, who is Christian’s mom, was basically sent home to fend for herself.
We wanted answers – and above all – we wanted hope. So we created Autism Speaks to help provide Christian, and the now 70-million children, teens and adults around the globe touched by autism, a fulfilling and happy life. Every day they serve as our inspiration, our lights. Our concerns for them keep us up at night and keep us going, crisscrossing the nation, and really the world, looking for answers and trying to wake up global leaders.
What are some of the greatest challenges you’ve faced? How did you overcome them?
Well, the lack of information at the beginning was a huge hurdle. Back then autism was a rare diagnosis and not something every pediatrician saw in the exam room, so the first uphill battle was awareness. From there, we needed to improve upon the science and research around autism to really understand and begin developing treatments so we began fundraising and seeking out the best and brightest researchers. It’s still a challenge. We have made a lot of headway but we have so much further to travel. We are very hopeful our 10K Genome Project, now that we are working with Google, will lead to deeper understanding of the genetic underpinnings of autism and therefore lead us to specific targets and the development of treatments. We are already learning from this work that there are many discernible and identifiable “autisms” and not just one.
What are some of the accomplishments you are most proud of?
I am so proud of all of my children and my grandchildren. We have been so blessed. In particular, I am proud of Katie for her intelligence and tenacity. She never gives up hope and fights for Christian every day of her life. If you know anyone with a child on the spectrum, you know that their courage and undying dedication to advocate for the needs of their loved one is unwavering. Katie has to maintain constant vigilance to keep Christian safe. It’s not an easy life. And yet, she gets up every day and keeps fighting.
Autism Speaks is still in its infancy. We are just entering our ninth year and have accomplished so much it is hard to pinpoint just one thing. Since 2006, we have raised awareness of autism prevalence by 44 percent among parents of young children thanks to our national PSA campaign with the Ad Council. That’s an incredible achievement and frankly vital since autism prevalence has grown by 78 percent over the last five years. Another example is our Light It Up Blue campaign. Last year, the world was awash in blue on the U.N. Sanctioned World Autism Awareness Day, April 2nd. There were 8,400 monuments, buildings and landmarks aglow on every continent, in 101 countries and 1,350 cities. This year our goal is every country! But there’s no time to rest, there is still so much that needs to be done for our families.
Who have been the most influential mentors in your life?
There has really only been one mentor – my husband Bob. We have been married for 47 years and have grown up together. I have watched him with love and bursting with pride as he led companies like Cox Communications and GE Capital. He rose to become vice chairman of General Electric and CEO of NBC and NBC Universal. His entire career has been a symbol of great integrity, intelligence and fairness. As his partner all these years he has prepared me for my role today, of being by his side as co-founder of Autism Speaks.
What would you describe as a turning point in your life?
Christian’s diagnosis definitely was a turning point in both of our lives. It became very obvious that retirement wasn’t going to happen – at least not yet. There was no way we, as people in the communications business, were going to sit back and not do everything in our power to help Christian and all the other boys and girls living with autism.
What are your goals for the future?
As I said, we want every country lit up blue this year on World Autism Awareness Day!
We want a national autism plan. The President promised us one and it’s time there’s a national plan of how to help these children, our children. They are our future. So many of their families do not have autism insurance coverage. They are going broke. They’ve cashed in 401Ks, sold homes and jewelry. One family was contemplating selling the dad’s – a former Marine who was wounded in action – military medals. This should not be! We have fought and helped win insurance battles in 34 states plus DC so far. We need the rest.
We also need Congress to reauthorize and improve the Combating Autism Act (CAA) which designates federal research dollars to autism.
And we have been focusing heavily on the aging autism population. In the next decade, 500,000 teens with autism will “age out” of the system in the U.S. They need a place to call home and a job. We are working with big and small companies to help them understand where, in their businesses, our young adults will thrive. One example is the Rising Tide Car Wash in South Florida. Started by an autism parent, it employs young adults on the spectrum. You have never seen happier employees. You almost want to bottle their enthusiasm. You can tell they are so proud of themselves for the work they are doing. And – let me tell you, they are doing a great job! Customers rave that their cars are the cleanest around!
We are also extremely concerned about all the cases of wandering in our community. At the beginning of this year we announced a new partnership with the National Center for Missing and Exploited Children. We set up an emergency portal on our website which links care-givers to vital resources and ensures they take the right first steps after they notice their loved one is gone.
Often the children who wander from their homes and schools are attracted to water. And so, we are working hard to teach our children how to swim. We just announced a new program, the Autism Speaks Scholarship Fund for Swimming and Water Safety, that will fund community programs and allow some people with autism to attend for free or little cost.#