Friday, March 28, 2014

1 in 68. 2 of 2.

If you are an autism parent, I'm sure you saw the massive social media frenzy with yesterday's announcement from the CDC. Their new rates of autism are 1 in 68.

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Well, sort of.

The numbers were accurate 4 years ago.

If you were 8 years old.

And, if you lived in 1 of 11 test site areas.

The rest of us out there were not included in those numbers. Like my boys (who were too young). And like my entire State (which was not one of the test sites).

The whole thing makes me want to puke. Seriously.

I was in a craptastic mood because of the latest and greatest "news" from the CDC and was being fairly vocal about it online when one of my Facebook friends asked me why I was upset.

For SO MANY reasons!

As I told her, it's isn't just about the CDC "math". They obviously need a larger sample size for the analysis to be of any actual value. This 1 in 68 business is just fluff. We need the REAL, CURRENT numbers!

As you know, I have 2 boys diagnosed on the spectrum. Through my nonprofit work I know hundreds upon hundreds of affected children and families that are LOCAL in my area.

In fact, a mom I know said that a classroom in her school has an incidence rate of 1 in every 5 kids in one grade. 1 in 5! And, the next grade is about 1 in every 10 kids. 1 in 10! This is only 2 grades in 1 elementary school, and there are that many kids with autism.

Does this not shock anyone?

Or, shall I say, does this not shock anyone that doesn't already have a kid with autism?

It's safe for me to say that in our local area, the average across schools is approximately 1 kid with autism in every classroom, and likely there are even more than that. This is just my own observation based upon what I know about the area, but I can tell you that my half-assed estimate is far more realistic than the CDC's numbers.

Once again, things are swept under the rug and autism families continue to struggle. Middle class autism families are often in huge crisis all the time. They can't afford therapies because they are too poor (and our State still refuses to mandate autism coverage) and they don't qualify for help from the government because they're too rich. That's a freaking joke. Too rich. Most of these families are single-income because autism can be so all-consuming.

These kids slip through the cracks, they don't get the interventions and education they need, the parents are stressed to the max, some of those marriages fall apart, and the cycle of crisis continues on.

More kids get diagnosed every single day. I meet new families almost all the time. It keeps getting worse.

When will enough be enough?

When will the rate of autism be so shocking to the entire nation that sweeping change and action will be demanded? Does it have to get to 1 in every 5 kids? It may already be in some areas. Or, does it have to be a 100% incidence rate, like it already is with my boys?

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