Advocates Express Anger to Interagency Autism Coordinating Committee

April 14, 2014
IACC meeting marked by emotional public comments; Insel promises results of large study comparing vaccinated vs. unvaccinated kids

Last week’s meeting of the Interagency Autism Coordinating Committee (IACC), in Washington, D.C., was marked by an unusually long and emotional public comment period. Autism advocates expressed anger that federal funding for autism research has not produced medical treatments or otherwise improved life for their loved ones.

“You have spent more than $1.65 billion,” said one anguished father. “But at the end of today, you did not help my son even one bit. Nothing. Zero, zero.”

IACC chair Tom Insel responded during discussion of the public feedback. “What I took away most of all from the people who spoke was the frustration and anger that we haven’t delivered,” he said. “As you have pointed out, we have failed to prevent a single case, to provide a single cure. While that’s not unique to autism, it shouldn’t make us feel any better.” Dr. Insel is also director of the National Institutes of Mental Health.

Committee members also responded to demands that the committee do more to address the dire shortage of housing and supports for adults with autism. And several parents called for more research on vaccination and autism and on unproven but widely used alternative treatments.

Committee member and researcher David Mandell called for research on the best ways to serve the growing adult population. “We have very little evidence about the best strategies to do that,” he said. “Garnering that kind of evidence is going to be much more expensive than almost any other kind of research we do because it involves residential costs.” Meanwhile, Dr. Mandell urged the IACC to invite presentations from private individuals who are pioneering creative housing solutions across the nation.

Dr. Insel reported the completion of a large NIMH-funded study that compares autism rates between vaccinated and unvaccinated children in families affected by the disorder. The results are currently under peer-review, Dr. Insel said, with publication expected before the next IACC meeting in July.

Outside of the public comment period, presentations included a CDC report on its recently released "1 in 68" prevalence update; a talk by John Elder Robison on a new neurodiversity course at William and Mary College; and an update by Stuart Spielman, senior policy advisor and counsel with Autism Speaks, on legislative advocacy efforts.

The day-long committee meeting can be viewed online here. Viewers can review the published agenda, here, to find presentations of interest.