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First Published Wednesday, 28 January 2009

By Christina A. Samuels


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.


Priorities Skewed?


“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.



Ari Ne’eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC  20036
http://www.autisticadvocacy.org
732.763.5530



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