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.