The CDC’s Autism Tracking is Lacking

The ProfessorIf 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) was among them.  She said 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 that 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, seemingly 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?  Is it lack of funding?  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.  Where 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

Fire the deniers

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’re just seeing the same old 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.

Accountability

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.

~ Professor

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18 Responses to The CDC’s Autism Tracking is Lacking

  1. Toni Lowman says:

    Aah Professor!
    I love your comment about being “highly tuned in to the ‘fated’ events of our lives.” I have to wholeheartedly agree.

    When my daughter was pregnant with my grandson, I, for some reason, began to furiously research autism. Which then led me to research vaccine safety. I shared all of the information that I could find with her and her husband. Based on all of the information, they decided not to vaccinate him.

    Unfortunately, after he was born, they succumbed to the fear mongering by doctors, media, and “concerned ” parents and vaccinated him on a delayed schedule – thinking they were being “safe.” Now they are one more to add to the statistics. It breaks my heart to see this once bright child, who was hitting his milestones on time, or early, regress.
    Somewhere deep inside, I must’ve known.

    Thank you for all of the information you provide, as well as resources and reviews. It helps to know that we’re not alone.
    God bless you all.

    • ProfessorTMR says:

      *sigh* It can be tough to be right, can’t it? Thank you for your kind words. I hope that it gets better for your grandson. <3

  2. melissa says:

    My heart breaks for the families that are suffering. I want you to know it is not in vein. Those of you who are fighting the good fight and speaking out are the very people that triggered my mother’s intuition when I was pregnant. It is because of you that I have a healthy one year old son. I know in my gut that had I vaccinated like I originally intended things would be much different.

    YOU ARE BEING HEARD. Keep screaming and I will keep screaming for you. Thank you. I will pray everyday for complete recovery of your precious babies.

  3. nhokkanen says:

    Great post. Though I’ve been at this since 2002, I had no idea that Holly B. and company had calculated the true, accurate autism rate back then. People working in the trenches have the real story. It’s beyond infuriating that government and industry are working so hard trying to drown out what they’ve done to a generation (or more) of children.

  4. Laura Hayes says:

    As always, excellent article, Professor! (If only our nation’s professors were speaking the same truths to their students!).

    I shared your article with a large vaccine and health-related email group I have, which includes people from all across the country. In my preface to your article, I included this short list of action items that the 3 people pictured above not only neglected to do, but refused to do. Thought I’d share it, and perhaps other Thinkers will have action items to add to it.

    Short list of simple and basic actions that those in charge have REFUSED to do:

    1. Let the free market work with regards to consumer demand for (or not for) vaccines

    2. Compare the health, development, well-being, and infant mortality rate of the vaccinated with the unvaccinated (DUH!!!)

    3. Actually study those who have “autism” (vs. messing around with the #s from epidemiological study after epidemiological study)

    4. Require that doctors report any and all possible adverse reactions to vaccines to a database that is closely and constantly monitored, with data acted upon in a timely fashion, by an independent entity that has zero connections to the pharmaceutical industry (and train doctors what to monitor and alert parents about with regards to adverse vaccine reactions, both in the short-term and long-term)

    5. Require the immediate removal of any and all heavy metals (known neurotoxins for heaven’s sake!) from vaccines and from the manufacturing process of vaccines, and immediately recall all that have already been sold and distributed (another big DUH!!!)

    6. Listen to and learn from parents who have witnessed, firsthand, adverse vaccine reactions in their children and subsequent regression

    7. Talk to teachers and speech-language pathologists who have been teaching and working with children since before 1987 and ask them about the changes that they have witnessed firsthand in the students with whom they work

    8. Require independent, and proper, testing of each and every vaccine individually, and in the groupings in which they might be administered, and forbid the companies that make and profit from the vaccines from being involved (again, DUH!!!)

    9. Investigate the plethora of other much more safe and effective ways of protecting, maintaining, and enhancing the health of our children (and population) versus focusing solely on vaccines (not one of which has ever been proven safe or effective) and infectious diseases

    I could go on and on about what a humane, concerned, thoughtful, intelligent person in a position of power would have/should have done as the children in our country were getting sicker and sicker, more and more disabled, and dying in infancy at a far greater rate than in any other developed (and in some cases, undeveloped) country.

    We must not elect people who are not going to take on the problems associated with vaccine mandates, and the problems we face with an ever-increasing number of chronically ill, disabled, and intellectually, socially, and behaviorally-damaged children in our country. Those should be top-priority, on every politician’s platform, issues.

  5. Foxylibrarian says:

    Do you create what you fear? Ever since watching the made-for-tv movie Son Rise when I was a little girl I, too, had a fascination with autism, and one of my greatest terrors was that my child would have it. I read Temple Grandin and Jenny McCarthy books well before my child was diagnosed. I did the alternate vaccine schedule. When one of my friend’s son was diagnosed I breathed a sigh of relief that the angel of autism had passed over my door. But still my son succumbed.
    If our medical community had spent their energy studying this disorder as the disease process it is instead of denying their culpability and going down the safe, uncontroversial gene rabbit hole I am sure I could have averted it. My pregnancy was a GMO and gluten orgy, as I ate processed baked goods to soothe my morning sickness. My substitute OB gave me a flu shot without my permission – he just stuck it in my arm and laughed away my concerns! I was Strep B positive when I gave birth, so my son and I received a nuclear dose of antibiotics. I was never educated about restoring the gut biome and its importance, and that 80 percent of my son’s immune system resided there. Or that when the gut becomes inflamed, this can result in microglial activation in the brain due to the gut brain axis, and how hard it is to reverse this process once it starts. When my son got thrush – a clear sign of pathogenic yeast overgrowth – my concerns were dismissed. When he got eczema – a clear sign of food intolerances and intestinal permeability – I was told to smear a topical steroid cream over it, which as useful as putting a piece of duct tape over your car’s blinking oil light. When he began to slip away, his pediatrician dismissed our concerns, saying that he was ‘too engaged’ to have autism. But he continued to vanish, like someone with Alzheimer’s, losing all of his speech, pointing skills, etc. Finally we got the regional center to send out a psychiatrist (I’m sure who was paid handsomely by the state) to observe him for two hours and we were handed the diagnosis. Nothing biomedical was recommended, mentioned or considered by these experts. ABA therapy was their only tool – which is like trying to teach a child with a broken leg how to walk without first setting the bone.
    My heart breaks for my son, our children and our families. I have had friends in the medical community tell me with a straight face that it’s due to expanded diagnosis – even though out of my high school class of 90 women 6 of us have children like this, children who were on track developmentally, engaged, verbal and who just slipped away like their souls were being stolen. Children who are ‘coincidentally’ suffering physically with gut dysbiosis and debilitating autoimmune disorders (Crohn’s, eczema, allergies, asthma). It’s beyond crazy-making. I take cold comfort in these new statistics – our numbers are so great that we cannot be swept under the rug. Whenever the status quo is threatened I expect a fight. These children are our wake-up call, and I pray that our nation will rise to the occasion, but I am exhausted and cynical.

    • Susan Pearce says:

      I’m so sorry this has happened to your family. I believe this mom (Patrisha, in this video that I am giving the link for) can help a lot of parents heal their children of autism and other disorders. As you can see in the video, Patrisha is healing her son Aaron’s autism with the GAPS diet, which is also healing the other members of her family of things that had been wrong with them. This is very inspiring. The book she is talking about is called Gut and Psychology Syndrome: Natural Treatment for Autism, Dyspraxia, A.D.D., Dyslexia, A.D.H.D., Depression, Schizophrenia, by Dr. Natasha Campbell-McBride.
      https://www.youtube.com/watch?v=XmdjYIwb0BE

    • ProfessorTMR says:

      Ah, foxylibrarian (love your name, by the way), that is an eternal question for me. I think we DO bring on that we fear because of how much energy we put into visualizing that outcome. “Everything we say is a prayer.” HOWEVER, I think that some of us are highly tuned in to the “fated” events of our lives. It’s like we know what is to come and we are reacting to it ahead of time. I would not be at all surprised if that is what is operating in your case. I wrote a blog that had some of these ideas around the death of my son as an infant, called “When Intuition Fails.”

      We’ve all had our exhausted and cynical days. The key is to fill back up with whatever feeds your soul. Find it and do it. You deserve it and it will make you more effective on every front. 🙂

  6. Taximom5 says:

    People like Paul Offit, Dorit Reiss, and Art Caplan need to be held accountable.

  7. Susan Pearce says:

    Excellent article! I’m going to share it on my Timeline.

  8. MelissaD says:

    Thanks Professor – I have been wanting to post about the #s and this was the perfect thing to share. Wondering if someone at TMR could do one of those picture things/ meme? of Lin Wessels quote? I think it sums up perfectly how many of us feel. I would love to use it as a profile pic on FB….

  9. BESkala says:

    Thank you. THANK YOU. I hardly know what to quote when I repost this because I want to quote the whole darn thing. Keep fighting the good fight!

    • ProfessorTMR says:

      Thanks, BES. I think this is my favorite part:

      “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. Where 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?”

  10. Diana says:

    Yes. Yes. And YES! Fantastic post!

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