Friday, March 30, 2012

I Just Have to Ask.... WHY?

So I guess most of you have heard about the new autism information released by the CDC yesterday.  In case you missed it, here's a quick summary from Babble:

The Centers for Disease Control (CDC) has just released a new report on autism in children and the numbers are staggering: in the last decade, autism spectrum diagnoses have increased 78%. They now say that one in every 88 children has an autism spectrum disorder (ASD).
Since the CDC’s last report in 2009 alone, the number of children identified with these illnesses — which include autism, Asperger’s, and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) – has gone up 23%. The statistics were compiled by looking at the number of eight-year-olds in 14 states who were receiving services for ASD such as therapy and school support.

As a mom of a child with autism, I must admit that many times I read an article or hear a news segment about possible causes of autism and I tend to think, "Who cares?  Quit spending money chasing rabbit trails as to why we have autism and use those funds to help our kids get the services they so desperately need."

But seeing this latest report, reading tweets and editorials, and watching our local news do a piece on it, I found myself getting frustrated.

The increase in autism spectrum disorders in the last decade is astounding.  And there seems to be no end in sight.

Maybe you can attribute some of it to better awareness by parents and better diagnosing by doctors. Or maybe you think that autism is the new "go-to" label for children who seem to be just a bit "off".  Or maybe you believe vaccines are the cause - too many shots at too young an age.  Or maybe you agree with those who blame environmental causes - pesticides, insecticides, hormones and chemicals in food products, and the like.

But no matter what you or I believe, it's time to do something about it.  It's time to find the cause, or causes.  It's time to ask why.

There have been many instances in our history where terrible things have happened to a large population.  Because enough people started asking why, some of these "epidemics" were later proven to have been preventable.

Take Thalidomide, for example.  It was commonly prescribed in the late 1950's to treat morning sickness but was withdrawn in 1961 after it was determined to cause birth defects.  Numbers vary but anywhere from 8,000 to 12,000 children worldwide were affected.

This is nowhere near the number of children we are seeing affected by an autism spectrum disorder today.  And I don't know how many more children have to be diagnosed before something more substantial is done.

When our children are newly diagnosed, we should be entered into some kind of clearinghouse, where we are recording all kinds of information in one place, answering questions such as the most common foods our children eat (and what brands), what medications we took while pregnant, how often we have our homes treated with pesticides, if we faithfully follow the vaccination schedule, if our children developed and then regressed, if they are always constipated, what the common airborne allergens are where we live.... and on and on.  Heck, let's go so far as to be ridiculous and ask what kind of car seat we use and what brand of diapers we buy.

We need to start searching for common denominators that link all of us together so we can stop this madness.  It may not be the same thing for every single child but let's start somewhere!

And let's stop treating people like they're crazy if they believe their child changed after the MMR vaccine.  Let's stop belittling people who choose to pursue biomedical options that seem wacky and like a waste of money.  We're all in the same boat and we can get a whole lot more accomplished if we stand together and make some noise as one very loud, united voice.

And it has to come from us parents.  Because here's what some of the "experts" said about the increase:

The CDC researchers believe the increase in autism in children is due to better awareness and identification by parents, communities and healthcare providers, and several experts have chimed in to say that, as scary as the numbers sound, the increase could actually be a good sign. It means that more kids who need them are being connected to services and treatment.

Excuse me?  The increase could actually be a good sign?  Only an "expert" could say something that stupid.

Yes, more kids will get connected to needed services, only if their parents are willing to invest enormous amounts of time and money, advocating for their child, tirelessly fighting tooth and nail for every single service their kids are entitled to as tax-paying citizens of this country.  From where I stand, there doesn't seem to be enough access to services for the kids we have already diagnosed.  Is there enough money for more and more children every decade to get all they need to learn, thrive, and live happy, productive lives?

If you couldn't tell already, I'm concerned.  Maybe some will think I'm crazy and maybe others will think I'm getting worked up about something that can't change.

But this is my kid I'm talking about.  This is my 1 in 88:


Yes, she already has autism.  And yes, I want to know what's going to be done for her, for her future.

But I also have to look outside of myself and my situation.  I want to know what's going to be done for future children.  We just can't keep things they way they are right now.  If we don't do something, when will the epidemic end?

No, I'm not a doctor or a scientist or a researcher.  But I'm a parent of a child with autism.  And that is the best kind of autism expert there is.  And I want to be heard.


12 comments:

  1. This is all well and good but someone asked on another blog, Try Defying Gravity, I think---what now? As in what are we going to do about it? A good question indeed.

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    1. I guess I'm thinking if we could just figure out why, then we would know what to do about it...

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  2. I'm with Lizbeth....what now? How long is the US going to let the statistics get out of control before they start doing full hardcore studies? It infuriates me.

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    1. I really do think we need to do something to get to the bottom of it. Next thing we know, it'll be 1 out of every 2 kids.

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  3. I don't think you are crazy at all, Lana. Concerned, passionate, a loving and caring mother, YES, but crazy? Not one bit (at least related to this topic! heehee!)
    It is these traits that we will celebrate WHEN the answers are found.
    Wish I was a computer guru -- I'd start that database today!!!

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  4. Replies
    1. Thanks. I have just a FEW things to say on the subject! :)

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  5. Great post Lana! I agree, they need to spend time and money on the why and helping children and families. We already know there is an increase, why keep doing studies??? It also worries me that there is an increase in food allergies among children. I really wish they would spend more time and money figuring out what these things to happen to our most precious blessings!

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    1. Amen, sistah! :) Let's quit doing studies on the numbers and find out what we can do about it!

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  6. Very well said. It's outrageous that it continues to be seemingly ignored by the government when the numbers are astronomical. Oh and by the way, your 1 in 88 is adorable. =)

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    1. I just keep thinking if we don't DO something, the numbers will be 1 in 2 before long. I hate to be a pessimist but dadgumit - what's it going to take??

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