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It’s All About Numbers

Tuesday night I had the privilege of attending my middle son’s DARE graduation at the local high school.  I hate to admit that I was more than a little bit preoccupied from all the emails, news tips, and web stories I had seen for the prior couple of days about the CDC’s expected upcoming “big” announcement about an update in autism incidence rates in the U.S.  I found my thoughts focused on the kids that were sitting in the bleachers on the other side of the gym floor from me.

Watching.  Listening.  Observing.

Based on the then-current CDC rates (which was actually survey data from 2006 looking at kids born in 1998), there were about 4 kids in those bleachers with autism.

I was saddened to observe two young men that I am pretty sure made up half of that statistic in the bleachers.  One sat alone, slightly removed from his classmates, rocking slowly but noticeably in his seat.  When the kids erupted in applause for the officers leading their program, his hands slapped over his ears and the rocking intensified.  A staff member comforted him and he spent much of the remainder of the program staring up at the lights on the ceiling.

A second little boy could not stay still in his seat.  Could not – not “would” not.  He stood and sat, he moved places and hopped around, he walked up and down the bleacher stairs, and waved his arms when corrected by a staff member.  Near the end of the program, he appeared to be counting the treads in the stairs, making his way to the bottom where he hopped and waved his arms more.

Do I know that either of these young men are on the spectrum?  Do I know that either or both have IEPs in place to address their special needs in the classrooms of my son’s school?  No.  But I think the chances are pretty good.  And if not the two sweet souls I observed – then, statistically, there were at least two others (four after Thursday’s
announcement) I did not.  And then there’s my own son…

And I was thinking about a blog entry – and had a couple of lines down on a page waiting for time to finish it, when the CDC made its announcement.  1 in 88.  1 in 54 boys.  That’s the “new” number of children with autism.  But  there  are so many things wrong with that number.

It doesn’t tell the true story of the epidemic facing our children.

So what’s wrong with the number?

It’s a survey, rather than a census

The CDC relies on its ADDM Network (Autism and Developmental Disabilities Monitoring Network) – a surveillance system of 14 sites that estimates the prevalence of autism among 8 year olds.  Estimates.  Based on 14 states.  8.4% of the U.S. population of that age group.  That’s it.  And that’s the rate that’s set.  Apparently, the CDC thinks the
other 91.6% of the U.S. population of 8 year olds doesn’t count.

Every child in every state should count.  A sample is not representative unless it is actually indicative of the population as a whole – and the CDC’s measurements are not.

The data is old

The 1 in 88 number is based on a survey of 8 year old children from the ADDM sites collected in 2008.  Apparently, the CDC thinks the last four years don’t count in setting an incidence rate for today.

The surveyed age is old

Eight year olds in 2008.  Children born in the year 2000.  Apparently, the CDC thinks children born since the year 2000 don’t count in setting an incidence rate for today.

By extension, apparently the CDC thinks that Sam does not count.

So what does the number tell us?  That, despite the problems with the number itself, one thing is crystal clear.  It is skyrocketing.  A roughly 78% increase (according to the CDC itself) in just six years.  Extrapolate those numbers (see that here) and we come to 1 in 69 of the kids sitting in those bleachers on Tuesday (two more than what I thought while observing them there).

1 in 37 five year olds like Sammy.

Ten years from now, in 2022, we could see autism affect 1 in 9. And those numbers don’t even address the five times greater risk boyshave than girls.  That’s not heightened awareness.  That’s not over-diagnosis.  That’s not genetics.

It’s an epidemic.

Today, April 1st, marks the start of autism awareness month.  At 1 in 88, I think we’re all plenty aware.  If autism doesn’t affect your family, you know at least one – if not many families – that it does.

What number does it take to move our awareness to action?

One comment on “It’s All About Numbers

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