Monday, October 12, 2009

The New Stat: 1 in 100

Last week, a friend forwarded to me an article about the latest government study about autism (thanks, Kevin R.). The new study estimates the incident rate of autism to be about 1 in 100 rather than the previous estimate of 1 in 150.

My first reaction was pretty ambivalent. The incident rate in our family was 1 in 2. No study is going to change that. I'm not surprised that the number is higher than previously published but it didn't stir much in me. Many reacted differently than I did. Kent Potter of AutismSpot commented:

Am I speechless? Am I surprised? Am I at a loss for words? Am I dumbfounded beyond belief? Are you nuts? Of course I am not surprised, nor bewildered, and I am definitely not speechless. You don't have to be part of the Autism Community for long before you realize that the "official" numbers have been inaccurate for a long time. Ask most of us and you will likely hear that the numbers still are only a snap shot (or reference point) that is going to be updated again and the results even more "startling" to the general public.

Later in his blog post, Kent ventured into the area that's bothering me the most:

There is tremendous danger in spreading false or inaccurate "cures" or "fixes" when it comes to the world of Autism. I can't begin to tell you the number of times I have been told, "I had a friend, who had a sister who did ______(fill in the blank with anything you, pill, drops, therapy) and it cured their child of Autism. You should try it with Sam." Thank you, these are well intentioned offerings of insight and hope and I understand you are trying to help. This typically will lend me the opportunity to correct the confusion and help the kind person understand that the world of Autism is not a one size fits all. (my emphasis added).

I suppose that's the root of my ambivalence. The breadth of the autism spectrum is so broad that an incident rate feels meaningless to me. The challenges for those with severe forms of autism versus those with higher functioning autism or Asperger's Syndrome are so different that I'm beginning to wonder why they're even mentioned in the same sentence. The differences are a constant source of strife within the autism community that seems to grow every day.

As I was wondering how to approach the new statistic, John Elder Robison published an article on Psychology Today called "The 'Cure' for Autism, and the Fight for It". It articulated my concerns better than I could. John is probably one of the best known people on the spectrum today, so I take his opinions quite serious. From the Psychology Today article:

"Autism is the one medical condition I can think of where no one can agree on the legitimacy of any of its so-called advocacy groups....Autism's impact on people varies tremendously. Some people are totally disabled which others are merely eccentric. It's no surprise that the individuals at the two extremes would have totally opposite views of their condition.

The "High Functioning" (HF) autistic group says, "We don't need to be cured. We just need tolerance and understanding."

The "Highly Impaired" (HI) group says, "Enough with the understanding! We need some cures, fast!"

Parents of affected kids say, "I want my kid to have a good life, whatever that means or takes."

To a large extent, those points of view are mutually exclusive. HF people tend to see the HI desire for a cure as an indictment of their very being. "Get rid of autistic disability" morphs into "get rid of people like me," in their minds. From the HI perspective, the desire for tolerance and the HF statement that, "we are fine the way we are," seems to be a callous dismissal of their (HI) very real disabilities." (my emphasis added).

I encourage you to read all of John's article because it's excellent.

No wonder there's so much infighting in Autism World. We're fighting two completely different battles (at least). For some autism activists, though, it's a zero sum game. They only see their battle. They only win if others lose. If that means trying to discredit someone fighting a different battle, so be it.

1 in 100? 1 what in 100? I think we're quickly moving past the need for autism awareness. People are aware. What most people aren't is informed. Who can blame them? There's so much contradictory, vague and false information floating out there that I have a hard time considering myself as informed. Unfortunately, people residing in Autism World are part of the problem rather than the solution in this regard. If we can't recognize or respect the differing opinions within the community, how can we expect those outside of the community to do it?

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