Stephen Shore talks about his appointment to the Autism Speaks Board of Directors

By Debra Muzikar

Yesterday I had the opportunity to ask Dr. Stephen Shore some questions about his recent appointment to the Board of Directors of Autism Speaks. I hope others will find his answers illuminating. With the appointment of two board members on the autism spectrum, will this change the direction of Autism Speak’s policies? Here is what he had to say.

How do you feel about being the first autistic board member for Autism Speaks?

One of the first two persons with autism, as Dr. Valerie Paradiz was also installed to the board with me. That said, Valerie and I have an unprecedented opportunity to deepen understanding of autism for Autism Speaks as only persons on the spectrum can do, and build on the good work they are already doing on behalf of individuals on the autism spectrum.

Some examples of this work include the Parent Skills Training program dedicated to educating parents in low resource areas around the world and the various tool kits promoting support for people with autism. It’s a huge responsibility yet Valerie and I are taking it on for the benefit of the autism community.

Autism Speaks is in a period of great transition. Whether it’s music, organizations, or people, those periods of transition are where the most interesting things happen.

Have you attended any board meetings yet?

I attended my first board meeting on Wednesday, 2 December. It was a 3 and a half hour, very intensive meeting. It was a great learning experiences and I felt the board members listened to Valerie and I. The new Chair of the Board, Brian Kelley has a 19 year old son with autism. Brian wants nothing more than to support his son to lead a fulfilling and productive life.

Can you tell me how the opportunity came to be?

It’s hard to say. Maybe it stemmed from doing my opening keynote at the Autism Speaks National conference 3 or 4 years ago. Possibly it was from meeting with their president, Liz Feld, and questioning how could they be developing supports through the lifespan of people with autism while at the same time talking epidemics, cures, disasters, and other alarmist language. Additionally, I have been involved with their Family Services Committee and various grant review boards over the last several years.

What do you hope to accomplish?

I hope to help Autism Speaks continue on their track towards promoting fulfilling lives for people on the autism spectrum. That means supports, services, successful navigation of transition to adulthood in the areas of employment, education, residential, etc. The best way for me to do this is to work from the inside as a member of the Autism Speaks community.

Do you think Autism Speaks is trying to send a message that they are listening to criticism from the Autistic population about non-representation on their board?

That is very possible. After ten years of telling us “it’s time to listen”, Autism Speaks now visibly listening to people on the autism spectrum is a very good sign. With the stepping down of Bob Wright as board chair, Liz Feld as president, and other resignations, Autism Speaks is in a period of transition. Like with music, transitions in organization and people is where the most potential for growth often occurs. I look forward to meeting the challenge of working with Autism Speaks to improve lives of all people on the autism spectrum.

I know many autistic people are fearful of the amount of money that is spent on genetic research. They would rather see money spent on supports. Have you had a chance to look at their budget and do you think there will be a shift in focus in the coming years?

As John Elder Robinson so eloquently stated in a recent blog post we need to engage in both long term research for the future while addressing challenges faced today. The two are not mutually exclusive. Speaking of John, it is important to recognize the important work he did on the Scientific Advisory Board of Autism Speaks that most likely led to where we now have two individuals on the autism spectrum on their board of directors. As often said in academia, we stand on the shoulders of giants – in this case the advocacy efforts of John Elder Robison.

What is your vision for Autism Speaks?

With the tremendous resources and international reach Autism Speaks has, I see the organization striking a balance balance between short and long term research along with supporting people on the autism spectrum and their families with today’s challenges. It’s a tall order to expect of any organization requiring a great deal of thought and followthrough. I believe, with the help of direct input of people on the autism spectrum, parents, educators, business, government, scientists, and the rest of the autism community in collaboration we can get this done. We will accomplish so much more by working together and any one of us can do alone.

What is your first goal as a board member?

My initial goals for being on the board are to continue my efforts in the Family Services Committee focusing on housing and employment, the International work I am doing, and learning more about how I can be helpful to Autism Speaks support the autism community.

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Kathleen Tehrani from Autism Brainstorm interviewed Stephen Shore earlier today.

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Dr. Stephen Shore is a clinical assistant professor at the Ammon School of Education at Adelphi University teaching courses in special education and autism. Before his election to the Board of Directors Dr. Shore served on the Autism Speaks Family Services committee.