A high-profile employee’s recent resignation from a well-known advocacy group for people with autism has drawn attention to the work of a federal board charged with providing a strategic plan for the government on research into autism spectrum disorders.
The Interagency Autism Coordinating Committee was created through the 2006 Combating Autism Act. Among its tasks is to “develop and annually update a strategic plan for the conduct of, and support for, autism spectrum disorder research, including proposed budgetary requirements,” and submit that plan to Congress.
The advocacy world continues to debate whether vaccines may play a role in causing autism. Some advocates believe that preservatives like the mercury-based thimerosal—no longer used in childhood vaccines—or the combination measles, mumps, and rubella vaccination may play a role in causing autism in susceptible children. The federal Centers for Disease Control and Prevention says that there is no evidence, after multiple studies, that vaccines cause autism.
The coordinating committee took up the issue as a potential research priority, but voted on Jan. 14 to refer vaccine studies to the National Vaccine Advisory Committee, rather than recommend funding this year.
‘Credible’ Studies Cited
Alison Tepper Singer, who was formerly the executive vice president for communications and outreach for the New York City-based Autism Speaks, voted in favor of the move, which put her squarely against the wishes of the advocacy organization. She resigned the day before casting the vote.
“For some time, I have had concerns about Autism Speaks’ policy on vaccine research,” Ms. Singer said in an e-mail statement. “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.”
Ms. Singer is one of six “public” members of the Interagency Autism Coordinating Committee, which works under the auspices of the U.S. Department of Health and Human Services. Her term ends in 2011. The panel also has 12 federal members, representing different government agencies.
Autism and associated disorders on the autism spectrum are characterized by impaired social interaction, problems with verbal and nonverbal communication, and unusual, repetitive, or severely limited activities and interests. According to the Atlanta-based CDC, about one in 150 children in the United States is diagnosed with an autism spectrum disorder. An increase in the diagnosis rate of the disorder has made it a research priority and a challenge for schools.
In contrast to Ms. Singer’s views, Autism Speaks would like to see more research into possible links. In a policy statement, the group said such research is needed so that public trust in immunization programs can be protected. Active research is needed to determine whether there are “adverse events” from vaccines that affect neurodevelopment, if those effects are happening more often than before, if combination vaccines increase risk, and if certain subgroups are more susceptible than others, the organization said.
“It would be unprofessional to vote in a way that the organization wouldn’t want,” Ms. Singer said of her decision to resign before the committee’s meeting. “But it would have been disingenuous to vote against my conscience.”
Autism Speaks has withdrawn its support of the strategic plan put together by the committee.
According to Autism Speaks, Dr. Edwin Trevathan, the director of the National Center on Birth Defects and Developmental Disabilities at the CDC, worried that the IACC might be duplicating efforts under way by other organizations.
Removing the vaccine-oriented studies leaves 40 others in the IACC’s strategic plan, with budgetary recommendations of about $789 million. The plan is now available for comment and will be sent to the new secretary of HHS.
Ms. Singer said she’s happy with the current research priorities, which focus on early warning signs of autism, research into treatment and appropriate services, and research into environmental causes.
But Ari Ne’eman, the president of the Autistic Self Advocacy Network, said the research priorities are tilted too much toward causation and prevention, and not enough toward quality-of-life service issues, which his organization supports.
“The focus on causation has been a source of real damage to the broader autism community,” he said.
A version of this article appeared in the January 28, 2009 edition of Education Week as Plan for Federal Autism Research Marked by Debate on Vaccines