The Autistic Self Advocacy Network, formed five years ago, argues that society should be more accommodating and accepting of those who have autism. Rather than making autistic children "normal," treatment and services should ensure that they have equal opportunities.
Giving those who have autism a voice in the debate is critical, said Ari Ne'eman, the group's president and a founder. Discussing treatment and research priorities without listening to those with autism would be like allowing men to run the women's rights movement, he said.
"Frankly the national conversation in this country has been dominated by parents and professionals," Ne'eman said. "They have a valuable voice, but it's not the only voice out there."
Less than 1 percent of research funds go to support services for the needs of adults with autism, he said.
But increasingly, advocates and even researchers argue that those with autism have skills that others lack. In an article that appeared last week in the scientific journal Nature, a Canadian researcher suggests that many people with autism have unique intelligence. The researcher, who has several colleagues with the condition, has shown that people with autism may have superior cognitive skills, particularly perception and reasoning....
Not surprisingly, self-advocates tend to be those on the higher-functioning end. Ne'eman, for instance, serves on the National Council on Disability, a federal agency that advises Congress and the president on disability policy.
Those who are not as high-functioning may need more than the accommodation that the self-advocacy movement supports, said Cathy Pratt, director of the Indiana Resource Center for Autism in Bloomington.
If you view these positions as two distinct camps, "the reality is that sometimes you have to go in between," Pratt said.
But she knows how detrimental the idea of a cure can be. Recently she spent an hour in her office, talking to a man who felt that he would never be accepted unless his autism was cured.
"If their autism is part of their character, part of how they identify themselves, to say to them that we have to cure you now is really saying that we don't accept who they are now," she said.
Sunday, November 6, 2011
Shari Rudavsky writes at The Indianapolis Star: