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Autism Awareness and the Potential for Partnership

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From the Associated Press:

More than a dozen of the world's first ladies on Friday called for enhanced research on autism worldwide.

Ban Soon-taek, wife of the U.N. Secretary-General Ban Ki-Moon, said "not too long ago, those with autism were set aside. Today this reality is still prevalent in some parts of the world."

Panama's first lady, Vivian Fernandez de Torrijos, emphasized that early intervention is key.

U.S. first lady Laura Bush also sent a note for the event, calling autism "a global health issue."

The event was a part of global initiative unveiled today by Autism Speaks. In just three years, Autism Speaks has grown to become a major player in the disability advocacy world. Bob Wright, a former vice chairman for General Electric and chief executive officer of NBC and NBC Universal for more than 20 years, is one of the founders of the organization.

Without a doubt, more needs to be known about autism, and Autism Speaks has worked hard to make sure that more parents and educators understand cognitive developmental milestones for children. Many children can be helped earlier if the adults around them recognize the signs of autism spectrum disorders.

At the same time, other disability organizations have worried that single-minded focus on one particular disability, like the current flurry of attention around Down syndrome, distracts organizations from working together on common goals. I recently wrote an article about this phenomenon. An excerpt:

Groups that advocate on behalf of specific disabilities are proliferating, fueled by a medical establishment that can trace disorders down to their very genes and a communication system that can easily connect people around the globe.

But some advocates worry that too much focus on autism or Down syndrome, even on the presidential-campaign trail, could distract from efforts to support common issues that affect many groups.

The issue is of particular concern in education, because many of the accommodation, inclusion, and differentiated-instruction efforts in schools have the potential to cut across several diagnostic boundaries.

“What’s good for kids with autism is good for a lot of kids with developmental disabilities,” said Colleen Horton, the director of public policy for the Texas Center for Disability Studies, a part of the University of Texas at Austin. To suggest a label is all that needs to be known about a child “doesn’t do justice to the kids,” she said.

I interviewed Peter V. Berns, the executive director of The Arc of the United States for that article, but wasn't able to include him in the written piece because of space constraints. But one joint activity that he drew attention to was the widespread condemnation among disability groups of the use of the word "retard" in the movie Tropic Thunder. "There was an extraordinary coming together of organizations," he told me. Alison Singer, an executive for Autism Speaks whom I interviewed, referred to the same effort in our conversation.

So that's one good example of partnership that worked well. But should there be more joint efforts like this? Or are there already many examples of successful common advocacy?

3 Comments

I think it is wonderful that there is an initiative by Autism Speaks. It is also great that so many respected figures are getting involved since Autism is so rampant these days. You brought up a good point though. Should there be single-minded focus on one disability? It is important to become aware and familiar with an individual disability, but something this big could bring awareness to an array of disabilities. This could be a perfect opportunity for advocacy for many. They could talk about numerous disabilities. It is important to educate people on all types. People need to be informed of the characteristics of people with disabilities. Once people better understand disabilities, they want to become more involved in this movement.

I see the problem as robbing from one area of research to focus on another. There is, after all, only so much money in government at all levels. I'm from NYS and we have a politician who is running a single ad for election that announces his support for autism research and programming. He was previously running a different ad, too, that was more generalized. While this man's life has been affected by the births of two grandsons with autism, it is vital that politicians do not become totally focused on one group of handicapped individuals. I grow concerned when I see such singlemindedness in a politician.

When Autism Speaks and all of the other 'awareness groups' add adult autistic individuals to their board of directors, I'll take them seriously about the 'good intentions.' Thank you for publishing this article. We need to advocate for ALL children. All of this pandering gives an air of elitist snobbery re: autism.

BTW, I have a son who is on the autism spectrum and I get sick over local 'awareness' groups who discriminate against differently-disabled children (won't allow kids other than 'autistics' to enroll in their programs).

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