After attending Wednesday’s congressional briefing on the latest autism statistics, I found myself with three questions, despite having asked several at the briefing. They are variations on the same theme, and not exactly new, but seem more pressing after more than an hour of listening: Why is the Centers for Disease Control and Prevention still in charge of monitoring and explaining the rise in autism? Why are the CDC and Autism Speaks cozying up to each other in such a public way at this particular moment? And why was the Congressional host heaping praise on the agency when it covered up the first signs of the epidemic -- and in his home district in New Jersey, of all places?
The event was co-sponsored by U.S. Reps. Chris Smith (R-NJ) and Mike Doyle (D-PA) and billed as “a Congressional Briefing on the Centers for Disease Control's recent announcement that autism now affects 1 in 88 American children.”
Rep. Smith began the proceedings, which drew probably 30 people to a room in the Rayburn House Office Building. Congressmen often try to make news at these kind of events, and before he started speaking an aide passed out a statement by Smith headlined, “Global Autism: ‘A Developmental Disability Pandemic’ – 67 Million People Affected According to Autism Speaks.” Then I realized the statement was from May 31, 2011. Nothing new to say, I guess.
Smith began by describing the CDC’s Brick Township study, which started after a parent reached out to the congressman in 1997 (he’s been around for 16 terms, as he pointed out). The parent was concerned about “an apparent prevalence spike” in autism. The CDC investigated, Smith said, and “did an expert study that was extraordinary … and all of a sudden it became clear that it wasn’t just Brick. It seemed as if there was some game changer somewhere in the population causing this huge new increase in autism.”
Well, not exactly. In fact, not at all. The CDC did find a rate of 1 in 150 children in Brick Township – the highest ever reported anywhere in the world to that point – but said no conclusions could be drawn from the data about whether there was an actual increase. (That refrain has become familiar, repeated time and again by the CDC at Wednesday’s briefing. Some things never change.)
In our book, The Age of Autism – Mercury, Medicine, and a Man-made Epidemic, Mark Blaxill and I took a look at the actual data the CDC used in its Brick Township study, which the group SafeMinds had obtained from the CDC. In fact, the autism rate in Brick Township was actually zero in 1989, the start of the study period. Not one kid had autism.
As we wrote, “Once you have the real trend data, you can figure out how hard the CDC had to work in order to report a result that said there was no trend. … If this wasn’t a cover-up, it’s hard to think of a polite synonym.”
So the opportunity to recognize, report on, and try to intervene in the autism epidemic years ago was lost, and lost by the CDC itself. Since then, hundreds of thousands more children have developed autism in the United States alone. Today, though, the CDC remains in charge of studying the rate of autism and looking for the reasons behind it. In response to a more recent spike in autism in the Somali population, the CDC said it was going to do a really thorough analysis and cited the Brick study as precedent for the kind of really thorough job it would do. Oh, joy.
Smith’s comments were a prelude to his introduction of the CDC’s two speakers, Marshalyn Yeargin-Allsopp and Jon Baio. I hadn’t heard of Baio, an epidemiologist and principal investigator on the new report, but I certainly knew Dr. Yeargin-Allsopp. She is a developmental pediatrician and Chief, Developmental Disabilities Branch, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention.
She also was a co-author of the CDC Brick Township study (Prevalence of Autism in a United States Population: The Brick Township, New Jersey, Investigation, published in Pediatrics on November 1, 2001.)
Now, this is not about Dr. Yeargin-Allsopp, whom I’ve had dinner with and who remains friendly and professional. But to the extent she was part of this study and other CDC activities that in my view amount to a denial of clear evidence of harm from the CDC’s own programs (namely, the vaccination schedule), she represents an institution with much to answer for. An institution that needs to get out the way and let someone else get to the bottom of this.
But back to the introductions. After the Brick study, Smith went on, “the CDC was off to the races doing its great work, along with the NIH, in trying to determine what is truly going on. That led to five years later we have an autism act,” the Combating Autism Act, which was renewed last year.
Great job, CDC. Smith continued:
“The people behind this great work that was done – and there’s always disagreement about what should be studied and to what extent and what may be a trigger – well, we have with us today three extraordinary people” who will give “expert insight especially into this most recent study that just came out,” the 1 in 88 number.
He then introduced Dr. Yeargin-Allsopp, Baio, and Dr. Andy Shih, vice president for Scientific Affairs at Autism Speaks. Smith left the podium to Baio, went to the back of the room, and, shortly thereafter, quietly exited. The CDC and Autism Speaks had the floor.
Baio and Yeargin-Allsopp went through the numbers, followed by Shih. Their presentations were interesting in terms of what the agency and Autism Speaks say are the most important issues and directions in autism research, and I will summarize them in an upcoming article.
Then came question time. Peter Bell of Autism Speaks had a question about ascertainment, and – gesturing around him – said he wanted to get in a follow-up since he suspected “then we’re going to go on to something else.”
Ah yes, Something Else, the pet name for the 900-pound room-hogging gorilla elephant, the "what may be a trigger" issue as Smith demurely phrased it, the one that dare not be spoken by the CDC or Autism Speaks. In response to another question, Yeargin-Allsopp had just described the agency’s longtime efforts to “determine what some of the risk factors are” for autism when I raised my hand.
Me: Given the fact that so many parents believe that vaccines caused their child’s regression, isn’t the CDC exactly the wrong agency to be looking into causation and prevalence and whether there’s an epidemic? And I’d like you and also for Dr. Shih to comment on that since they’re co-sponsoring this event.
Yeargin-Allsopp: OK. Andrew, stand up here. Why don’t you answer this?
Shih: Well, why don’t you answer first, obviously? (general laughter) So the question is? Would you repeat that, please?
Me: Uh, isn’t the CDC exactly the wrong agency to be looking for causation given the concerns of so many parents that vaccines caused their child’s injury and autism?
Shih: Right. So, I don’t think Autism Speaks is in a position to answer that question. So this is obviously a federal government issue.
Me: Why are you co-sponsoring this event then, or why are you up there with the CDC?
Shih: We’re not cosponsoring it.
Me: Then why are you up there?
Shih: I’m reporting on the cost of autism related to the rise in prevalence rates, which is absolutely alarming. What I can tell you is Autism Speaks is very proactive in investing in research in looking at risk factors related to autism. So some of the risk factors that you’ve heard about today, for example, you know, low birth weight, prematurity, increased age, they are actually related to research that was partially supported by Autism Speaks.
So we are very proactive, we believe we can accelerate science and don’t have to wait ten years for results.
Yeargin-Allsopp: Thank you. And I would just say that, you talk about the Children’s Health Act (cited by Rep. Smith), we didn’t write the Children’s Health Act. Congress mandated to do what we’re doing, so I think you’re asking the wrong person, to ask us why we’re doing what we’re doing.
So you might want to ask others about that. Other questions?
So I guess, yes, Autism Speaks did not co-host the hearing. But they did share the dias with the CDC, and of the putative co-hosts, one (Rep. Doyle) never showed as far as I know, and the other was gone by the time anything having to do with anything was brought up.
It’s probably better to say the CDC and Autism Speaks co-led the event, co-avoided the question
I just don’t get it. Why are the CDC and Autism Speaks doing this, why are they collaborating in this way? That’s not a rhetorical question, and maybe our readers or others can help answer it. There was reference at the briefing to Autism Speaks helping fund CDC studies, so there’s an economic alliance, for sure -- a conflict of interest, I'd call it. But at a very basic level, the CDC says it’s not sure there’s an autism epidemic, while Autism Speaks says there is an "alarming" one that constitutes a national emergency -- and so, for that matter, does Rep. Smith (“some game changer somewhere in the population causing this huge new increase in autism”).
Why are these people all cuddled up? Who do they co-hold, or co-attend, or co-habit meetings where they co-ngratulate each other for all the hard and wonderful work they've all been doing lo these many long and trying years, and how much more wonderful work they all will be doing for many, many, many more years to come?
It looks like entrenched bureaucracies entwined in a public-private partnership that wants to go on and on and on. And on.
Anyway, more to come on the briefing.
Dan Olmsted is Editor of AgeofAutism.com and co-author, with Mark Blaxill, of The Age of Autism – Mercury, Medicine, and a Man-made Epidemic.