Tuesday, October 6, 2009

Increasing Numbers

The print, radio, television and Internet news services have all carried stories yesterday and today about the increased prevalence of autism spectrum disorders. The latest figures put the number of American children with any form of the disability at about 1 in 100; and for boys only, the incidence is much higher – 1 in 58. It is not clear what has caused the dramatic increase, and some have said it is a question of better diagnostic tools and tests, as well as a broader definition of ASD.

Concurrent with these news releases have been anecdotal stories of children, teens and young adults coping with the milder forms of autism, such as Aspergers. There is a cottage industry of “social coaching” for high-functioning autistic teens. They learn how to enter, hold and maintain a conversation; how to make phone calls, how to be a good host for company.

As I read, I made a mental inventory of which skills my son was good at, which he was improving at, and which he was not yet so good at. I think he has learned pretty well how participate in conversations. Although if there are adults around (parents, teachers) he is still occasionally likely to let them take his role, asking the appropriate questions and sharing information.

There were a few things that struck me in one of the articles I’ve read over the past two days. The first was that, try as they might to do and say the right thing, there is about a 50-50 chance that a teenager with a social communications disorder will be “rejected” by a teen peer (although I prefer to think of it in a less harsh phrasing – maybe that the peer would not be fully inclusive). My son was really never rejected in grade or high school; but neither was he included in any particular group when it came to activities outside of school. This actually had an upside, in that my son always worked hard on his homework and graduated from high school as a member of the National Honor Society. Still, I would not have minded seeing an occasional “C” in exchange for a couple of friends he could go to a movie with.

The second thing that I was happy to see was the mention of the social networking site, Facebook. This has become an extraordinary part of my son’s social life. He can connect with friends without the pressure of reading faces or tones. Every child with a social communication issue should create a page on Facebook as they transition to high school.

Finally, I was surprised to see one of the girls in the coaching class say that she’s “always known [she’s] not normal.” What courage! But it makes me wonder how she came to that conclusion, and how her parents react to her saying something like that. I know that children, adolescents and adults living with some mild form of autism spectrum disorder are as normal as they can be. Still, how many times has my son done something as innocuous as stepping away from me when I try to hug him, that made me think, “I just wish he were normal.”

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