Advocacy groups can play a vital role in advancing treatment of a disease, but a small but vocal group of parents of children with autism may be hindering as much as helping the latest efforts to promote research on the disorder.
Case in point: when the Interagency Autism Coordinating Committee meets on Oct. 23 to consider revisions to its strategic plan for autism research, it will no longer include one of its most esteemed scientists: Story Landis, PhD, director of the National Institute of Neurological Disorders and Stroke.
Landis had chosen to step down from the IACC in the face of complaints from some parents that she was dismissive of their concerns about vaccines being a cause of autism. The trigger was a relatively innocuous note that she had scribbled to a colleague during a meeting of an IACC; after the meeting ended, a parent retrieved it from the floor and posted it on the Web site, Age of Autism, claiming it showed insensitivity to parents of autistic children. That, in turn, set off a feeding frenzy on the blogosphere. David Kirby’s blog on The Huffington Post was the first to report that Landis had resigned, apologizing for behavior that “eroded trust at a time when we need to build stronger ties across government and the community.”
Landis’ note questioned whether another panel member, Lyn Redwood, was pushing the idea that autism is a multisystem disorder rather than a neurological disorder because that might lend a bit of credence to the widely debunked idea that vaccines cause autism and to lawsuits seeking damages.
What makes the complaints about Landis’ note so perplexing is that her question was not out of line. Redwood did actually file a lawsuit seeking damages for a claim of vaccine-related harm to her autistic son. (See p. 174 of David Kirby’s book, Evidence of Harm.) She has continued to argue at the IACC that more research needs to be done on vaccines as a cause of autism, even though millions of dollars spent on studies of this issue have failed to find a significant connection. My story in last spring’s Stanford Medicine magazine on "Vaccines under the gun" is one of many documenting how scientists have shown that vaccines are not the cause of the spike in cases of autism, which is now estimated to affect one in every 100 children.
Many parents who once worried about vaccines being a cause of their children’s autism have agreed it’s time to move on. Indeed, the IACC’s strategic plan, issued in January, says that the priority for federal funding on autism research should be studies on the genetics underlying autism and studies on other environmental factors that could play a part in causing the disorder, though it acknowledges that monitoring of vaccines should continue. Nevertheless, there remains a core group of parents who will never change their mind about vaccines, and they routinely accuse anyone who disagrees with them of being part of some government-pharmaceutical industry cover-up. Landis is the latest casualty, though others on the IACC continue to be subjected to a campaign of smears
At the Oct. 23 meeting, the IACC will consider revisions to the plan. It's a very good bet that Redwood and a few of the other IACC members who share her view are going to try to change the language in the report. It would be surprising if they succeeded in changing the plan, as they are a minority on the 18-member panel, which includes a dozen federal officials. Still, their effort could lead to a very contentious meeting. It’s unfortunate that these parents can sidetrack such important work and that their complaints can discourage scientists such as Landis from serving on the IACC. Although another NIH scientist will be taking her spot, her resignation sends a message that joining such a committee involves serious risk of public humiliation.