What’s in a Number?

Yesterday was the release of the latest CDC prevalence rate for Autism in the United States.  As everyone expected, the ratio changed again (and not for the better), sliding from 1-in-88 to 1-in-68.  I think I expressed my thoughts quite succinctly yesterday with a single tweet:

I’m amused at how much noise is going on about the latest CDC figures being released today. The numbers don’t matter – the kids do. #autism

But, since this is a blog, let me expand on that.

A couple of years ago, the number was 1-in-166.  But… between 1-in-166, and 1-in-68, is there really a difference to those of us with children or family members with Autism?

The answer is no.  The number in my household is 1-in-2, and yet that number too doesn’t really hold any relevance.

For starters, the data is based on children who were eight in 2010, which as was pointed out on the CBS Morning News today means that the rate is certainly still higher today.  This also ignores, as the rep from Autism Speaks pointed out, the fact that there’s lower reporting and later diagnosis in certain segments of the population.  And further, this also ignores the change between the DSM-4 and DSM-5.

But all of that is really meaningless, because it’s just a number.  I’m reminded of the oft-stated quote of “There are three kinds of lies: lies, damned lies, and statistics.”  The statistics can mean just about anything, and all they really point to is that this is a bigger and bigger problem than we thought, and that it demands some kind of response.

Will the change in the numbers mean more aid to families who have a family member with an ASD?  No, not immediately.

Will the change mean more research into the causes of Autism, or effective treatments for the symptoms of Autism?  Not immediately, no.

And that’s the rub, to me.  We can quantify how the rates are increasing, but we can’t tell if it’s better diagnosis by doctors, more awareness of parents leading to seeking early intervention, or if the rates are really increasing.  But in the short-and-medium turns… the numbers don’t themselves do anything.

Autism needs to be more than a number.  We just, as a community, need to figure out how to translate that prevalence statistic over to something that gets action from those who can make the changes we need.

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