Early this year I was asked to work on a history of the Autism Society for our Web site. As one of the younger staff members, it was especially interesting to see where this organization has come from and how much we have accomplished. The Autism Society has been there through the major accomplishments in autism the last half of the 20th Century – helping get people on the spectrum a right to a free and appropriate public education, advocating for autism research at the National Institutes of Health, and establishing the first autism tissue program are just a few examples.

This history was the launch point for the video that will open the conference on Thursday. Starting with an interview with the Autism Society’s first elected president, Ruth Christ Sullivan, we have been collecting perspectives on how the themes of the past will color the future of autism. We also spoke to Sondra Cunningham, founder and current president of our local DC Chapter; Stephen Shore, a board member and person on the spectrum; Valerie Paradiz, Panel of People on the Spectrum of Autism Co-Chair; and Martha Herbert, our director of treatment-guided research. Though we won’t be able to post the videos until after the conference, I wanted to share a bit of a preview today.

I was lucky enough to be able to travel to New York to assist in the interviews of Dr. Paradiz, Dr. Herbert and Dr. Shore. Dr. Paradiz was our first interview that day, and from the beginning her insights were enlightening. Our opening question was on what the youth could do to take up the mantle of advocacy. When we wrote the question, our thinking was, “What can youth with autism do?” but her answer focused around typical youth. It really made me think more about what I had done, and could have done, growing up with a brother on the spectrum.

As much as you work hard to protect the civil rights of other groups, perhaps it’s now time for you to think about individuals with disabilities, individuals with autism and how can you take steps to really preserve and protect and nurture those rights. Can you do it in the hallways at school, or on your campus at your college? Can you become a little more sophisticated in how you view people with autism? And what can you do to begin to meet them partway in your day to day life and truly and genuinely integrating them into the culture?

Of course, she had plenty to say about youth on the spectrum too.

I think that any opportunity for them to become more self aware for knowing others on the spectrum, and to become more self aware in what their rights are – and that it’s okay to advocate for them and stand up for them. In doing so, we actually help others along on the spectrum who either haven’t learned those skills yet, or can learn by our own modeling and benefit from all of us as we work together.

Self-advocacy was something that came up in all the interviews, but another similar recurring theme was the idea of incorporating many worldviews and perspectives as we look to the future. Dr. Paradiz put it this way:

My hope is to … be able to articulate our needs and experiences as people on the spectrum to our neurotypical friends in the professions, in schools, in agencies so that we can all work together to build bridges and create an even more diverse understanding of what autism is. Because together all of our voices count.

Stay tuned for more from our interviewees in Part II …

- Carin Yavorcik

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