Bernadine Healy must be barfing in her grave.
At least the former National Institutes of Health director, who told the self-evident truth that vaccines could not be ruled out as a cause of autism, because the research hadn’t been done, because the government didn’t want to do it, didn’t have to sit through Tuesday’s meeting of the Interagency Autism Coordinating Committee. She didn’t have to hear the current NIH Director, Francis “gene” Collins, talk about all the advances in pinpointing the genetic causes of autism, now reaching 30 percent according to his math; didn’t have to listen to HHS Secretary Kathleen Sebelius laud IACC Director Tom Insel for all the progress he’s made on autism as the rate doubled over the past five years, or Insel laud Sebelius for all the progress she’s made on behalf of the President of the United States of America (much more on him later), or Collins laud Sebelius and Insel for … ad nauseum.
But I did. Yeesh.
This was the inaugural meeting of what Insel described as version 3.0 of the Interagency Autism Coordinating Committee, enabled by the re-authorization of the Combating Autism Act last year. As such, the session was a showcase for the failure of the CAA and in particular for the inaction, misdirection, and torpor that comes with having no mission except avoiding the reality of an autism epidemic and the accompanying truth that it’s an environmental illness in which the government’s own nutty War on Germs has played the major role. It’s sort of the living out in a Washington hotel conference room in 2012 of Bernadine Healy’s admonition from the grave. (“The question has not been answered,” Healy had told CBS. “One should never shy away from science, from getting causality information. I think the government or certain public health officials within the government have been too quick to dismiss the concerns of these families without studying the population that got sick.”)
So there sat Certain Public Officials and the grateful dopes they could find to agree with them. Insel even managed to rustle up three new members for the committee who are on the spectrum, and thrilled to be there (by which I mean on both the committee and the spectrum). Bully for them, but not one (to my memory) said anything about helping those for whom autism is a nightmare from hell every single day, or for their families.
There were a few bright spots. Several people whom I would describe as members of the Rebel Alliance stood up and turned their backs after listening to Sebelius repeat the same old blather. (See photos below.) All of them wore T-shirts that said, on the back, “Sebelius turned her back on the autism epidemic. Again," and displayed different pithy comments on the front – “$1 billion researching what doesn’t cause autism” being a particularly pertinent maxim, roughly the amount funded by the CAA, coordinated by the IACC.
The private hotel guards had been alerted by Homeland Security that there might be a protest, and two of them were talking behind me. “Protest?” one said. “They just look outspoken to me.”
Of course, that’s terrifying enough.
The room was odd and poorly suited to an event like this (how convenient!), with a giant six-foot pillar in the middle that made the turn-your-back event a little hard to see. But this strikes me as a first by parent-advocates whose children, in Healy's words, "got sick," and who have turned against the status quo and its enforcers.
The committee is essentially a bunch of droning bureaucrats doing their masters’ bidding (the hierarchy being the IACC, the NIH, the HHS, and the White House), and a few non-government representatives who repeated how happy, so very happy, they were to be honored with such an honor as the honor of being on a committee such as this one. An exception is the redoubtable Lyn Redwood, who took the obligatory go-round-the-table-and-say-hi moment to make a statement that was only sharpened by her intimate and informal Southern style. Noting Insel’s comment about how hard, how very hard, the committee had been working – 17 meetings in one year! – she said, “Despite, Tom, all the meetings we’ve had, very little has been accomplished.”
Another ouch: A new committee member named Jan Crandy from Nevada uttered the V word, saying that a possible relationship between vaccines and the autism epidemic needs to be investigated.
She might want to talk to Redwood about that idea. It was on the agenda for one brief shining moment during IACC 2.0 until Insel, no doubt in consultation with Collins and Sebelius, pulled an end run and got it knocked off. I can only imagine the orgy of congratulations all around on that one.
Afterwards, I asked Crandy why she had said that about vaccines. “Because I think that needs more research,” she said, looking at me like someone who needed the obvious explained to them, and sounding exactly like Bernadine Healy. “Someday it’ll be like cancer and the tobacco funds.”
(Remember that name, fellow members of the Alliance. According to her IACC bio, Jan Crandy is “a case manager for the Nevada State Autism Treatment Assistance Program (ATAP) and has been a leader in raising awareness and treating autism spectrum disorders in Nevada for more than 15 years. She is a dedicated advocate and parent of a child with autism. In her current position at ATAP, Ms. Crandy manages and develops programs for more than 65 children with ASD. In 2007, Ms. Crandy was appointed to the Nevada Autism Task Force by Governor Jim Gibbons. In that role, Ms. Crandy helped develop policy recommendations for state policymakers on ways to improve the delivery and coordination of autism services in Nevada. She also serves as Chair of the Nevada Commission on Autism Spectrum Disorders. Ms. Crandy began her career in advocacy in 1996 when her daughter was diagnosed with autism. With the support of family and friends, Ms. Crandy started a nonprofit organization called Families for Early Autism Treatment (FEAT) to help parents of children with ASD in Southern Nevada.”)
Vaccine enthusiast Allison Singer was there, late of the Autism Science Foundation, formerly with Autism Speaks, where she got the seat she clings to like a barnacle on the Titanic. Geri Dawson, chief science officer of Autism Speaks, who took that seat, was there, too. Dawson is a Flexian, a shape-shifter assimilating every viewpoint because Autism Speaks, like the Blob, must grow or die. So in the space of her three-minute intro Dawson could say she “resonated” with the execrable Matt Carey (Left Brain/Right Brain) and his bogus concern about all the autistic adults who’ve been overlooked and need to be served, and also that she “resonated” with Lyn Redwood’s sense of urgency.
Anyone who can resonate with both Matt Carey and Lyn Redwood isn’t just resonating, she’s quivering like a bowlful of jelly.
Oh, and Michael Strautmanis, J.D., spoke. He is, according to the program, Deputy Assistant to the President and Counselor for Strategic Engagement to the Senior Advisor, Executive Office of the President. Yes, he works for the PRESIDENT of the United States of AMERICA, get it? And the president, he told us, calls him Straut. As in, during the signing of the Affordable Care Act in the Oval Office, the President said, Straut, we’ve got to do more.
Before him came Kareem Dale, JD, MBA, Associate Director, White House Office of Public Engagement and Special Assistant to the President for Disability Policy. These titles, I’m telling you, they’re wearing out my typing finger. Dale talked about being in The Oval for the signing; when Straut started talking to the IACC, he said Dale had stolen his thunder about that anecdote. He wasn't smiling, and I don’t think he was kidding.
There was a subtle but distinct whiff of those-Republicans-are-ruining everything-for-you-autism-people. Sebelius remarked how there was not even a budget for this fiscal year, let alone next, and that the Republicans were about to vote to repeal Obamacare for the 30th time. (I’m trying to remember, but didn’t Obama not submit a budget for this year? – not sure on that one.) And it's hard, so very hard, to get any more money out of a recalcitrant Congress.
I’m a progressive, so I get to say this – I couldn’t help thinking that if the government couldn’t spend any money on healthcare, it couldn’t cause autism as effectively as it has, nor cover it up nearly as well. And the IACC wouldn't exist. So I wasn’t feeling the outrage on that one.
That was the dissonance – an audience full of people who believed this committee, an embodiment of the federal government, was in fact causing the problem it was supposed to fix. That’s enough to make your head hurt.
While the committee was out to lunch (how do you tell?), our folks held a press conference upstairs at which Mark Blaxill, Jen Larson, Katie Wright and Katie Weisman, Jake Crosby and Mary Holland spoke wisely, passionately, and well. The contrast with the drones and doobies was quite noticeable.
Katie Wright talked about how her parents worked so hard to pass the Combating Autism Act and the IACC ,and Insel was now stuffing it with – I forget the exact wording – people not right for the task, looking into things that no one involved in creating the CAA ever cared about.
After lunch, Mark, Katie Weisman, Jake, and Mary were among those making public comments to the committee. We’ll publish those powerful statements separately.
Before heading back for the afternoon session, Katie Wright kind of captured the day for me.
“I can’t believe what we just had to sit through,” Katie said. “I’m going back for more. I don’t know why, but I’m going to stay to the end.”
Dan Olmsted is Editor of Age of Autism.