By Dan Olmsted
I hope the CDC is enjoying these warm spring days and basking in the sunshine of mainstream media love during Autism Awareness Month. But I strongly suspect that the shadow of darker times ahead is starting to haunt their dreams.
The CDC -- mailing address, 1600 Clifton Road, Atlanta -- is clearly managing, massaging and manipulating the data about the growth of the autism rate. It is really hard to see how long this can go on, with people like Florida Congressman Bill Posey going after the agency's Coleen Boyle in a powerful Autism One radio interview with Brian Hooker. Sample:
"I know we have an autism epidemic. You know it. She knows it. She knows we know it. But for some reason they refuse to acknowledge it publicly." Regarding Boyle's assertion that the increase is due to better diagnosing, Posey said, "I don't think anybody that's intellectually honest with this issue can begin to fathom that lame excuse that she uses."
Yesterday, we ran an extraordinary piece by Katie Wiesman of SafeMinds making clear just how lame that excuse is.
Because problems with our blog platform (not AOA specifically) meant we were down part of the day, I'd like to urge you to go back and read that piece carefully if you have the chance. As our own John Stone wrote:
"This is a colossal and important piece of work - a superb documentation of the CDC's smoke and mirrors operation. At every point the way the data is collected is inconsistent and obfuscating. Not an ounce of good faith behind any of it and the bottom line is the four trillion dollar bill, the cold monetary figure measuring destroyed human lives.
"No wonder Coleen Boyle quaked before the congressional committee."
Yes, no wonder. Bill Posey must look like Freddy Krueger to Coleen Boyle.
Katie, whose writing is always marked by respectful but relentless clarity and attention to detail, shows how messed up the CDC epidemiological data is, even by the standards it sets one year, then forgets the next. No follow-up, no action plan, no urgency. To borrow a wonderful headline from yesterday's Dachel Media Update: "Autism No Crisis, No Cause, No Chance It's Vaccines."
Anne has been attacking the mainstream media's credulous reporting on the CDC, and Katie makes the same point: "On March 28th, thousands of media outlets released the new US autism prevalence numbers of 1 in 68 in 8-year-olds born in 2002 and counted in 2010. These children are 12 years old now. What was glaringly lacking in the media coverage was any critical thought about that actual data, any sign that reporters had actually read the new report or any sign of urgency on behalf of our children."
Which is what the press is for -- not to give 24-hour coverage to a still-missing Malaysian jetliner, but to hold powerful interests, and specifically the United States government, to account on behalf of the people.
One of the most interesting among the many overlooked points in the CDC report: The percent of autistic children who also have intellectual disability seems to be declining, a trend that roughly coincides with the phasing out of the mercury additive thimerosal in vaccines when these now-12-year-olds were infants. But as Katie summarizes the CDC attitude:
"There is no possibility that autism and vaccines are connected because the numbers are still going up."
Katie's comment: "Assuming that there is, in fact, a smaller percentage of ASD children with Intellectual Disability, those shifts do correspond to the beginning of the phase out of thimerosal in vaccines, which is a plausible explanation as well – but one CDC doesn’t mention. Thimerosal reduction in the recommended childhood vaccine schedule (HepB, Hib and DTaP) started in 1999 and it was phased out over several years. However, shortly thereafter, in the 2002-2003 season, the CDC started encouraging flu shots (most of which contained thimerosal) for infants 6-23 months and in the 2004-2005 flu season flu shots were formally recommended for all infants starting at 6 months of age. Meanwhile, the CDC and ACOG also added influenza vaccines (most of which still contained thimerosal) to the recommendations for pregnant women in all trimesters in 2004. This FDA letter makes clear that thimerosal-containing infant vaccines would still have been administered throughout 2002 – the birth year of the current ADDM report but at amounts, on average, probably less than in the 2000 birth cohort. The exposure to any particular child is an unknown without checking their history."
I called attention to this possibility in a brief editor's note the day the CDC released its data, and I continue to find it fascinating. As Katie points out, the CDC data is so gummed up it's impossible to tell what might be going on, but this observation is, in fact, consistent with a pretty intriguing possibility -- the CDC, which both surveils autism and recommends the childhood vaccine schedule, might find it convenient to bumble and stumble long enough to obscure any connection between the removal of mercury in vaccines and any sort of improvement in the autism outlook.
I've been "gathering string" on this issue for quite some time (this is a phrase an editor of mine used for pulling together separate threads that might eventually build a story, like a robin finding bits and pieces that become a nest). I've heard many people in the autism community talking for several years about seeing more "autism lite" -- not Asperger's necessarily, but kids who are less impaired, less physically ill and easier to recover with biomed.
Last summer I put some of this string together in a piece titled "Mercury and the Mystery of the Missing California Kids," citing "a couple of 'soft signals' from California [that] make me question the idea that severe or 'full syndrome' autism is still soaring on the same trajectory we saw in the 1990s."
Those signals included a comment from a mom and activist I met at an autism conference in California in 2010 that the younger kids "are milder overall," although there continue to be one or two very damaged children who seem to have severe failure to thrive. She said they don't see headbanging, and instead of arm flapping they now see finger flicking.
Another signal came from Cherry Sperlin Misra, who lives in India but has California roots and has made a number of fascinating observations in both places. On a recent trip to California, she visited "a school in an upscale neighbourhood in Silicon Valley: This school has three rooms for the special kids. The room for the kids who are about age 5-7 has fewer kids than the other rooms, and the kids do not seem to have severe autism."
As usual, the comment section proved to be (at least!) as useful as my article, and produced an array of mostly confirmatory observations:
From Greta: I have noticed this in our district too, a town of approx. 20000. Under age 10 - 11 there is only one severe case of autism and that child is Asian and I'm not sure where he was born. Still lots of ADHD, aspergers and PDD-NOS but all verbal.
From Lou Conte: "I am on the Board of Education in my town and I get reports on special education on a regular basis. The bulk of our ASD kids are 12 years or older. There are no severe ASD kids younger than 11. Now this is one small school district in one Westchester County, NY. However, I have heard BOE members report the same thing in their districts."
From Maureen: I am a California resident. My husband and I always look for the young ones at Seaworld, the San Diego Zoo and we don't see them. My daughter was in the clinical trials for STX209 and went to LA frequently. I asked one of the doctors that was in charge of the clinical trials if he had seen a drop in the number of young children with Autism. He said it only looked like the numbers were dropping because they were so good now at early intervention. I almost threw up.
From JulieC: My 15 year old daughter attends an autism treatment center that treats people from 18 months up to adults. The oldest person there is 19 and there is a VERY noticeable difference in the severity of the older kids. It is painfully obvious when attending holiday performances where the younger kids sing and dance in unison and tell jokes while the older kids are mostly nonverbal with little to no eye contact.
Now, who knows what this all means. There are certainly very young children with severe autism.
But given the faint signal that managed to emerge from the CDC mangled mashup of autism surveillance, I think Freddy Krueger may be starting to disturb the sleep of the denizens of Clifton Road.
Dan Olmsted is Editor of Age of Autism.