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Roy Richard Grinker

His new book offers a scholar's— and father's— perspective on autism

  • By Arthur Allen
  • Smithsonian magazine, April 2007, Subscribe
 

 
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    Your teenage daughter, Isabel, has a form of autism. How has she affected your research?

    Seeing how much progress she's made makes me more eager to tell people that autism is not necessarily a devastating diagnosis, that people with autism can make tremendous progress and that experts are finding better ways to help both autistic people and their families. Anthropologists usually try not to influence the cultures they study, but I've felt compelled to share my own story.

    How do some other cultures deal with autism?

    In the Democratic Republic of the Congo, people on the autism spectrum are often recognized for having great skills. Either because they are seen as more in touch with the spirit world, or they're recognized for their skill at, say, knowing what every plant is for. Similarly, the Navajo view a person with autism more as someone who never became an adult than as someone disordered. They talk about autism as perpetual childhood. In Senegal some societies call autistics "marvelous children." Even in the United States, I've heard people talk about them being closer to God; they're honest, they seldom lie, they're more pure. I found that belief in India as well.

    Contrary to some media reports and the assertions of many autism support groups, you contend in your new book, Unstrange Minds, that there is no autism epidemic in the United States.

    Yes. Higher prevalence rates don't mean the disorder is more common. A host of factors has created what I call a perfect storm of the autism "epidemic." Greater awareness, less stigma, better methods of counting, changing definitions of what autism is and is not, and earlier detection, among other things, have led to higher prevalence rates. I see these rates as evidence that we're finally getting it right. And with higher numbers, parents have the ammunition to fight for more and better services for their children. The changes in autism awareness and diagnoses are not just the result of scientific advances but of cultural changes. You often find that culture changes science more than science changes culture.

    Does our ability to better recognize autism spectrum disorders say something about us?

    We are getting to a point where the word "diversity" doesn't just mean ethnic and racial differences but also different types of minds and abilities. The fact that we live in an age in which people can communicate through computers has also helped autistic people work and interact with others. Isabel is embraced by her community. And she would not have been not long ago.


    Your teenage daughter, Isabel, has a form of autism. How has she affected your research?

    Seeing how much progress she's made makes me more eager to tell people that autism is not necessarily a devastating diagnosis, that people with autism can make tremendous progress and that experts are finding better ways to help both autistic people and their families. Anthropologists usually try not to influence the cultures they study, but I've felt compelled to share my own story.

    How do some other cultures deal with autism?

    In the Democratic Republic of the Congo, people on the autism spectrum are often recognized for having great skills. Either because they are seen as more in touch with the spirit world, or they're recognized for their skill at, say, knowing what every plant is for. Similarly, the Navajo view a person with autism more as someone who never became an adult than as someone disordered. They talk about autism as perpetual childhood. In Senegal some societies call autistics "marvelous children." Even in the United States, I've heard people talk about them being closer to God; they're honest, they seldom lie, they're more pure. I found that belief in India as well.

    Contrary to some media reports and the assertions of many autism support groups, you contend in your new book, Unstrange Minds, that there is no autism epidemic in the United States.

    Yes. Higher prevalence rates don't mean the disorder is more common. A host of factors has created what I call a perfect storm of the autism "epidemic." Greater awareness, less stigma, better methods of counting, changing definitions of what autism is and is not, and earlier detection, among other things, have led to higher prevalence rates. I see these rates as evidence that we're finally getting it right. And with higher numbers, parents have the ammunition to fight for more and better services for their children. The changes in autism awareness and diagnoses are not just the result of scientific advances but of cultural changes. You often find that culture changes science more than science changes culture.

    Does our ability to better recognize autism spectrum disorders say something about us?

    We are getting to a point where the word "diversity" doesn't just mean ethnic and racial differences but also different types of minds and abilities. The fact that we live in an age in which people can communicate through computers has also helped autistic people work and interact with others. Isabel is embraced by her community. And she would not have been not long ago.

    You also say vaccines don't play a role in autism.

    The scientific literature has not shown any evidence that vaccines or anything in vaccines is related to autism or its prevalence. Autism is probably many different, highly variable disorders caused by multiple genes interacting in complicated ways. But many people like to think there is a single cause.

    Arthur Allen is the author of the just-published book Vaccine: The Controversial Story of Medicine's Greatest Lifesaver.


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