The Curious Incident of the IACC, Vaccines, and Autism Speaks

Update January 16th, 8.30pm EST: Newsweek's Claudia Kalb interviews Alison Tepper Singer---go here for the interview.

This past Wednesday, January 14th, the Interagency Autism Coordinating Committee (IACC)---a federal committee revived under the Combating Autism Act of 2006 to coordinate research on autism sectrum disorders---met (according to the meeting agenda) to make budget recommendations and finalize the Strategic Plan for ASD research. The IACC has been developing the plan since 2007 and has sought input from the public through requests for information. Four scientific workgroups were convened on various topics of research on autism and a Services Subcommittee was created.

Not surprisingly, vaccines have been mentioned throughout this process. And now it seems that the topic of vaccine research, and specifically research concerning a hypothetical link between vaccines and autism, has been an issue that the members of the IACC have differed on. Indeed, this very issue has led to the resignation of IACC member Alison Tepper Singer from her position as Executive Vice President of Autism Speaks, a development which itself raises the question of whether Autism Speaks is more "invested" in the vaccine-autism hypothesis than has perhaps been apparent.

A November 21st meeting of the IACC was held to review the draft of the Strategic Plan. The committee was unable to finish its review of the plan and another meeting was called to continue this review in December. Discussion about the introduction to the plan, and specifically a section about the causes of autism, led to an extended discussion about how to word phrases mentioning vaccines; it could be said that this discussion extenuated the process of reviewing the Strategic Plan. I was able to attend the November 21st meeting but was not able to attend or listen in to the one on Wednesday.

The IACC is made up of 12 federal appointed members (from various federal agencies) and of 6 public members (most from various autism organizations; one member is an individual on the autism spectrum). According to a press release issue by Autism Speaks yesterday, the organization is withdrawing its support for the IACC's Strategic Plan. At issue seems to be the IACC's decision to take two proposals about vaccine research out of the Strategic Plan. Further, Alison Tepper Singer was the one public member of the IACC to vote in support of this decision to remove the vaccine research proposals. In doing so, she voted with the federal members of the IACC, and not in accordance with the public members.

Here's what is said about Singer's resignation and the IACC in a press release from Autism Speaks, and in another press release (quoted in full on Left Brain/Right Brain):

“It has been an honor and a pleasure to help to build this organization into the preeminent autism advocacy group—the group that has, in fact, elevated the word “autism” to the global vocabulary,” said Singer. “I am grateful to Autism Speaks founders Bob and Suzanne Wright for their leadership, insight, commitment and for the tremendous support and love they have shown to my family and me.”

“However, for some time I have had concerns about Autism Speaks’ policy on vaccine research. Dozens of credible scientific studies have exonerated vaccines as a cause of autism. I believe we must devote limited funding to more promising areas of autism research.”

Singer, it is noted, was the "first professional hired by Autism Speaks when it launched in 2005" and "has been responsible for directing the organization’s award-winning awareness and strategic communications programs," one of which----the film Autism Every Day by Lauren Thierry, which was widely disseminated over the internet---caused an intense uproar due to certain of Singer's statements made in the presence of her autistic daughter.

Mike Stanton on his Action for Autism blog speculates that, in stating that she is resigning from Autism Speaks specifically due to the organization's policy on vaccine research,

"[Singer's] espousal of scientific evidence may lead to advancement within the Obama administration. Such a prospect may reinforce the commitment to scientific principle among more of the staff at Autism Speaks and prompt more resignations."

And, too, do the stated reasons for Singer's resignation from Autism Speaks indicate that this organization, which has quickly made itself into a very large organization with affiliates in a number of countries, is wavering in its commitment to science? Stanton suggests that Bob Wright, co-founder of Autism Speaks, supports the vaccine hypothesis. Is Autism Speaks, which has a number of scientific advisory boards and steering committees, redirecting its focus onto the vaccine hypothesis and, in the process, focusing more on vaccines and not so much on autism?

A comment was recently left on this blog asking why there is only one post about vaccines. I responded that this autism blog here at Change.org is about autism, not vaccines.

It's high time that we unravel the association between these two that's gotten into the public psyche like an idée fixe and talk not simply about autism, but about people on the autism spectrum and the education, supports and services that they need and need now.