Education Update: With regard to your education what are some of the challenges you've faced and how have you met them?
Suzanne Wright: The biggest challenge I've ever faced is when my then-2-year-old grandson - our first grandchild - was diagnosed with autism in March 2004. There is no way to describe how utterly devastating it was to discover that Christian had developed a mysterious neurological disorder with no known cause or cure. We watched helplessly as this delightful, apparently normal little boy began to lose his ability to interact with the outside world. For our entire family, it has been heartbreaking.
What made it even more challenging was discovering how many of our questions had no good answers. Which therapies should our grandson have? Which work best? Where do we go for help? Because of the dearth of long-range clinical studies on autism, there are no standard treatment protocols. Our family - just like every family in this situation - was left to figure things out for ourselves. We assembled a team of specialists on our own, willing to try anything that might help. Unlike many other families struggling with autism, though, we were fortunate that we didn't have to sell our house or take on a huge burden of debt to pay for treatment. The costs can be staggering.
During our struggles to help our grandson, we felt hopeless. There seemed to be nothing we could do. But we couldn't give up. We finally realized that there was something we could do. We decided to launch Autism Speaks in order to make a difference for our grandson and for the more than 1.5 million individuals in the U.S. suffering from autism. Autism Speaks was launched in February 2005, thanks to the overwhelming response from the autism community and friends like Phil Geier, Mel Karmazin, and especially Bernie Marcus, who donated $25 million to get us up and running. So what began as private heartbreak has become a very public and heartfelt mission.
This experience has been, and continues to be, the greatest challenge of our lives, both personally as we witness our loved ones struggle with autism on a daily basis, and publicly as we work to find some answers. Through Autism Speaks, we are raising funds for vital biomedical research, promoting awareness about autism, and supporting education programs for children with autism. We're not going to stop until we have conquered autism—one child, one voice at a time.
Who were some of your mentors?
I don't have any traditional mentors but I'll say that my husband is the person I admire more than anyone in the world, and he has been incredibly supportive of everything I have tried to accomplish in my life, most especially with our efforts to found Autism Speaks and make it a significant force for positive change in the autism community.
Are there any memorable teachers or school anecdotes that you would like to share with our readers?
I decided to go to college after my youngest child was out of the house. It's something I always dreamed of doing —but I had no idea it would be so challenging. I spent many a night practically in tears at the kitchen table trying to write my term papers. It's one of the most rewarding accomplishments of my life and I wouldn't trade that experience for anything. Bob was absolutely wonderful through the whole process, always encouraging me and making me believe that I could do it. And believe me, there were times when I sat in the classroom surrounded by 20-year-olds and wondered what I was trying to prove. But I'm grateful for the experience...and the diploma. No one can take that away from me.
Your website reaches parents and professionals. How do you plan to increase the numbers of visitors to the site?
Our new website is designed for two different types of users; those who want to become informed about autism and those who want to get involved with Autism Speaks. Our “be informed” track takes users through the information they need if they have a newly diagnosed family member, providing information about therapy options, treatments and legal rights. Of particular interest in our “be informed” area is a new special feature called “expert find” that enables users to input their zip code and be provided with a list of autism service providers and medical professionals in their area. Our “be involved” track provides users with the opportunity to get involved in our many Autism Speaks fundraising events and to make secure online donations. We also have a news section that is updated several times a day with the latest news from the autism world, including scientific research studies, articles from around the globe, lectures and seminars, and news regarding autism legislation. And our popular ”In Our Own Words” column allows our users to share their personal stories with our community. By being a comprehensive site with new material every day we believe we will become the number one Internet portal for the autism community.
Are there any plans for increasing research?
Our primary goal at Autism Speaks is to raise money to support autism research. We have just released an RFP soliciting grant proposals of up to $100,000. In particular, we are targeting established scientists at major universities who have not worked in the autism field. Our goal is to attract the best and brightest minds to autism research.
Are there any plans to increase the number of public and private school programs for autistic children?
As the number of children diagnosed with autism grows, the demand for schools and services also increases. In the past few years there has been growth in the number of programs and treatment providers for people with autism, but not nearly enough to support the huge and growing population of autistic individuals. It is also important for us to work with state and local agencies to ensure that parents and adults with autism are able to get medical reimbursement for autism treatments and therapies. Autism is a medical diagnosis and yet most therapies and treatments are still not covered by medical insurance.
How can we build a national organization and build legislative awareness?
Autism Speaks seeks to be a strong unifying voice for autism awareness and legislation. We are working with the Ad Council to create a major new public service campaign that will create national awareness of developmental milestones and of the importance of early diagnosis and early intervention. In addition, Autism Speaks has taken a leadership role in supporting the Combating Autism Act of 2005, currently pending before Congress, which calls for more than doubling federal funding for autism research. The bill would also create screening programs and early intervention standards in all 50 states.
And for more, visit the Education Update web site.