The CDC’s Autism Tracking is Lacking
Originally published March 28, 2014, at www.thinkingmomsrevolution.com
If you’re not living under a rock you know the CDC came out with new autism numbers yesterday, 1 in 68 children who are currently 12 years old, and 1 in 42 boys. These numbers come from their Autism and Developmental Disabilities Monitoring (ADDM) Network. You probably already knew that’s an increase from the 1 in 88 we were given for 2012’s 12-year-olds. According to the CDC, we’ve gone from 1.14% of that age group being “on the spectrum” to 1.47% in two years. A 29% increase in two years! And we already knew from a CDC study that came out in 2013 that at least 2% of the children in this country between 6-17 years old are on the spectrum.
What you might not know is that hundreds of autism parents got together in Washington DC back in 2000, tasked with bringing the rates in their local schools. Holly Bortfeld of Talk About Curing Autism (TACA) told me she was among them. When all the numbers were compiled, what was the total prevalence they found? One in 68. Yep, fourteen years ago folks in Washington knew the numbers were much higher than the 1 in 500 they were still quoting.
If you thought a serious, often debilitating, lifelong disability was present at a rate of 1 in 500 kids and you found out that it was really a rate of 1 in 68 kids, wouldn’t that alarm you? Wouldn’t you think that should alarm the officials at the CDC? After all they get whacked out down there when there are six cases of measles, a generally self-limiting viral illness that keeps kids home from school for a week, throwing around scary words like “epidemic.” Surely they would understand the importance of this new prevalence information and act accordingly?
Well . . . maybe not.
What was Washington’s response to this huge increase in autism prevalence? They set off to find the Holy Grail of the “autism gene.” Billions of dollars have gone into genetic research that has come up with nothing more than a few versions of, “Well, we’ve found this gene that is slightly more common in the autism population than in the general population. It’s not a big effect, and we’re not even sure that it’s reproducible.” (Most of it wasn’t.)
The colossally stupid thing is that anyone with a brain could have told them there is no “autism gene.” The prevalence was increasing way too quickly. That kind of increase cannot be attributed to an “autism gene.” There had to be a huge environmental component. The only way you could even dream you’d find an “autism gene” under those circumstances is if you tricked yourself into believing the “better diagnosis” mantra, despite all the evidence to the contrary. True genetic disorders include things like cystic fibrosis and sickle cell anemia. When’s the last time you heard of an explosion in the rate of cystic fibrosis?
It makes far more sense to locate and study the affected population to see what they have in common. Has the CDC, NIH, or now the Inter-Agency Autism Coordinating Committee (IACC) ever used this common sense approach to getting the answers we so desperately need?
The answer is a resounding, “Hell, no!”
It’s important to understand that proper tracking of prevalence data is crucial when it comes to treating and preventing autism. How will a particular state or region know how to plan services for their populations without knowing how many people will actually need them? How will you determine what environmental factors are behind the huge increases we are seeing if you don’t know where the prevalence is highest and lowest?
The autism spectrum is quite broad and includes people with Asperger’s syndrome, who are often brilliant and articulate but have very poor social skills, and it also includes non-verbal people who seem utterly in their own world, content to spin objects all day long, possibly incapable of potty training or ever attending school. Obviously, a breakdown by diagnosis would be very useful information for the CDC to collect. The kids diagnosed with classic autism are clearly going to have different needs than kids with Asperger’s. Does the CDC track this minimal and obviously important data?
Nope. Not at all. There is no breakdown whatsoever by diagnosis, leaving states completely on their own with respect to providing autism services and treatments.
Contrast this picture — four-year-old data on children of one age that was collected in 2000, not broken down by diagnosis, garnered from a mere 14 states, many with data that is spotty at best — with the kind of data you can get on cancer incidence.
The National Cancer Institute runs a website with the most amazing set of statistical tools I’ve ever seen. In minutes, you can access statistics cut in a thousand different ways, including “a comprehensive system of interactive maps and graphs enabling the investigation of cancer trends at the national, state, and county level.” You can get data broken down by the location of the cancer in the body, by a particular age group, or even “age-adjusted.” You can even get your data split out by racial groups.
The only thing remotely comparable to the CDC’s ADDM statistics is that the most recent data for cancer is from 2010 as well.
Why isn’t the CDC doing tracking of this nature for autism when it would so clearly be useful, lack of funding perhaps? I am assured by Lyn Redwood of the IACC and colleagues of hers that there is no lack of funding. So if the CDC is getting adequate funding to do a good job tracking the autism prevalence, why is it continuing to do such a piss-poor job? Logic would lead one to wonder if they really don’t want people to know how bad the situation is and how the data breaks down by location and diagnosis, because that information would lead people to some “dangerous” conclusions. Conclusions that are likely to affect their beloved vaccine program, and the vaccine program is to be “protected” at all costs. Not children are to be protected at all costs, the vaccine program is to be protected.
When did the CDC lose sight of the fact that it was supposed to be good health they were safeguarding, not government programs that have run amuck?
“All of these years, I thought CDC stood for Centers for Disease Control. Obviously, it stands for Centers for Data Control. They sure as hell aren’t controlling disease, and the data is completely manipulated. Thank you for doing absolutely nothing.”
– Cam Baker Pearson, Thinking Moms’ Revolution
Not having breakdowns by diagnosis allows the CDC to continue to say some version of “Some of the increase is due to the way children are identified, diagnosed and served in their local communities, although exactly how much is due to these factors in unknown.” In other words, these increases could be due to “better diagnosis.” “We just don’t know.”
If you were in charge of tracking the autism epidemic, wouldn’t you make it your business to know? I sure would. I’m not “in charge” of anything, but I’ve made it my business to talk to people about these subjects, and I’m finding that everyone knows someone, often many someones, on the spectrum now.
Yes, some of them are “quirky” adults, like Daryl Hannah, who have survived quite well to date. I, personally, knew Michael John Carley, author of Asperger’s From the Inside Out and former Executive Director of The Global and Regional Asperger Syndrome Partnership (GRASP), before he knew he had Asperger’s. I have seldom met a more bright and articulate human being.
But more often, I hear stories of kids who can’t talk, don’t potty train, have severe GI issues, terrible food allergies, metabolic and mitochondrial disorders, and are severely delayed developmentally. Their parents often went through hell in order to get a diagnosis for their children. “Better diagnosis,” my eye! I call horseshit. (Maybe it’s because I live in New York and I see a lot more horseshit than bullshit that horseshit seems a stronger, more visceral image for me. ) Virtually all studies done recently have made it clear that “better diagnosing” can only account for a small percentage of the meteoric rise in autism rates.
This just wasn’t happening when I was a child. Most pediatricians of that era never even saw a case of full-blown autism in their entire careers. Many couldn’t even tell you anything about the condition. Are we seriously supposed to believe that all pediatricians of 40-50 years ago were so severely incompetent as to miss a huge cohort of non-verbal, not potty-trainable children? And if they really were so incompetent, then where are all these autistic adults? Why hasn’t anyone made a genuine effort to find these adults? I contend it’s because they know they don’t exist. The young adults graduating the autism services programs they’ve been in all their lives are threatening to overwhelm the few services available to them in the very near future. If we were just seeing the same old prevalence numbers that couldn’t be happening.
Drum roll please . . . 1:68 kids that are 12 have autism. The last group, the 1:88, are now 14. That is a dramatic difference that can’t be chalked up to genetics. Imagine the rate of kids born today? These aren’t numbers; these are children, these are families whose lives are forever changed. Children that will be in pain, won’t sleep, won’t speak, won’t eat, can’t stray from routine – so much more than just a number.
– Deanna Nemes Fecak, TACA Long Island Chapter
As the “better diagnosing” idea gets old, a new idea has been emerging: Overdiagnosis.
As I’ve mentioned before, I read everything there was at my local library on the subject of autism in the early 1970s when I was in junior high – that’s “middle school” in today’s terms. Why was I so fascinated with an obscure condition that was considered to occur in about 1 in 10,000 children? Who the hell knows. I’ve always been intuitive; maybe some part of me knew that autism would be a big part of my life – a big part of all of our lives – someday. For whatever reason, though, I knew a heck of a lot about autism when I was quite young, and I only ever met one family that had a severely affected child. That was the head of the Physics Department at Williams College, David Park and his wife Clara Park, author of the book The Siege about their journey with their daughter. I was far more sensitized to the subject of autism than anyone I knew, and I never saw it. I never even heard of a single case till I was already an adult.
Now it’s so common that friends, and even relatives, that I knew long before I began this work have children with autism. Are these children “properly” diagnosed? Or did their whiny parents get doctors to give them a diagnosis so they could “get services” for their perfectly fine children?
Seriously? What parent do you know who is going to move heaven and earth to get their child a diagnosis that follows them throughout their educational career, often severely limiting their options, in order to “get services” the child doesn’t need?! They think all these parents are so overburdened with free time and money that they seek out obscure therapeutic and medical treatments just because they’re bored?
Again, I call horseshit. The reality is that overstressed, overburdened parents have frequently been desperately seeking help for years before they can finally get someone to acknowledge what was right in front of their faces all along.
“Overdiagnosis” is just the newest way to deny the crisis that should have been evident fourteen years ago.
“I don’t know which one hurts me worse: Knowing I failed my child because I did not know how to protect him from autism or knowing that my government did, but didn’t care.”
– Lin Wessels
Want to know what other information the CDC has been keeping to themselves for fourteen years? Yeah, me too.
One thing we know from Freedom of Information Act requests is that the CDC’s Thomas Verstraeten study that is so frequently pointed to as “proof” that Thimerosal doesn’t cause autism, actually did the reverse before the numbers were finally massaged into “neutrality” and statistical insignificance.
I keep coming back to one image in my head. Helen Conroy, a.k.a. Goddesss, our erstwhile leader and perhaps still the spiritual heart and soul of TMR, with the single word ACCOUNTABILITY across her forehead.
Accountability indeed. It’s about time we had it.
It’s time to unite to raise a serious ruckus and get the bums kicked out. We need autism legislation in place that will finally make a difference in the lives of families living with the often devastating effects of autism.
