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Response to Gil Eyal - The Autism Conundrum

Posted By: Pamela LePage on July 14, 2009
 
I think the most important line in your commentary is this, "Everybody knows it (autism) is a chronic condition that cannot be cured, but nobody knows what quotient of potential is lying dormant in any particular autistic child. Thus, the very basis for distinguishing what is restorative intervention and what is not is disrupted. Autism shakes our complacent beliefs about the developmentally disabled and shows us how little we know."

I am a college professor is special education at San Francisco State University and a parent of a child with autism and some of what you say in your article feeds the confusion that people have about autism. People doing research now on autism (eg., Mind Institute --Davis CA) are finding that the autism epidemic is not a result of changes in diagnosis. A health epidemic that is dismissed in this way can be dangerous.

I have worked in the area of retardation for 30 years, and I have been working with children with autism for the last 5 years. Most children with retardation in the 80's are nothing like the children with autism today.

Deinstitutionalization happened in the US in the 70's and 80's. If the autism epidemic would have happened as a result of deinstitutionalization, it would have started earlier and it would have been more gradual. I worked with a number of adults when I was younger who left institutions. None of them seemed autistic.

Today there are many children born on the autism spectrum and many children have what is called Aspergers or high level autism. Many of these children do not have mental retardation, but are severely impaired socially. Most people don't even know how these children act. If they did, they would realize these children did not exist in the 70's and 80's. These children are not just "nerds" as some people mistakenly believe. It is important for people to realize that the numbers of children who have severe autism have increased as well as children on the spectrum who are high level.

Parents are spending money because they see potential in their children and also because they see that even children with severe autism can change as they get older.

Another misnomer is that parents of children with autism are getting what they want. Perhaps a few parents of children with autism are able to brow beat the schools into paying tuition for an expensive school, but that is far and away the exception. Most parents of children with autism have to fight to get their children a half hour of speech therapy each week. Most can't get socialization services. Insurance won't pay for an hour of occupational therapy. And, all agencies fight over who has to pay for any out-of-school services. I do not know one parent who has not had to fight the system to get simple services for their children.

Another misnomer is that parents who have children with disabilities are not poor and that when we talk about poor children, we are not talking about children without disabilities. Most parents who have children with disabilities are also poor.

I was disadvantaged in numerous ways as a child, including the fact that my family was poor. I wrote a book called, "From disadvantage girls to successful women: Education and women's resiliency." So, I believe in supporting poor children.

However, that doesn't mean we should stop supporting children who have physical problems. Since our society has had money problems, and since the autism crisis has surfaced, I've seen a lot of people trying to justify the idea that we need to take away money from children with mental retardation and give it to poor children without disabilities. If we are going to have that discussion, let's talk about it openly. Personally I believe a society should be judged on how they treat their children (all of them).

Pam
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 Response to Gil Eyal - The Autism Conundrum by Pamela LePage on July 14, 2009
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