Photo by Beth Kelleher, © 2007
It's a growing division in the autism community: is autism a disease, a condition that needs to be cured or is it a state of being that simply needs to be managed?
Organizations such as the National Autism Association advocate for research into the causes of autism and define it as a curable condition.
Autism Speaks walks the line between advocacy for research, treatment and cure and support for families and persons struggling with autism spectrum disorders.
In an article in Newsweek from May 16, 2009, Claudia Kalb interviews Ari Ne'eman, founder of the Autistic Self-Advocacy Network which advocates for learning to live with autism and gaining acceptance and accomodation from the world so that autistic people can learn to live independently with the disability.
One of Ne'eman's primary concerns from the article, is whether or not a prenatal test for autism might be developed and whether or not parents would choose to abort fetuses that test positive.
In June 2009, Penn Medicine announced breakthroughs in genetic research by a team of researchers that identifies new genetic markers for autism, building on results of a study announced in April. Most of the genes that have been identified by these studies seem to only identify a susceptibility to autism in the families and children studied, rather than being a hard and fast indicator. According to Penn Medicine, one of the researchers also indicated that many of the gene changes are very individual or particular to a single family. Per the article, this is "an indication of genetic complexity, in which many different gene changes may contribute to an autism spectrum disorder."
Based on these studies, it would seem that a definitive test for autism is a long way from being developed, given the complexity of the genetics involved. However, if there were such a test, would you use it? If you already have children on the spectrum in your family, would you want to know the likelihood of having another? Is autism a condition that needs to be cured or eliminated? Or do you agree with Ari Ne'eman that autism is a state of being and that the mindset of autistic people, autistic children adds something to the world?
Please comment with your thoughts and opinions.
Related Articles
- Erasing Autism: Scientists are closing on the genes linked to autism. So why is Ari Ne'eman so worried?, Newsweek, May 16, 2009
- Penn Medicine, CHOP researchers demonstrate first common genetic risk factors for autism, Penn Medicine, April 28, 2009
- More Gene Mutations Linked to Autism Risk, Penn Medicine, June 26, 2009
- Semantics: Do they have Autism or are they autistic?, York Special Needs Examiner, September 6, 2009
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