Special Education

Plan for Federal Autism Research Marked by Debate on Vaccines

By Christina A. Samuels — January 23, 2009 3 min read
  • Save to favorites
  • Print

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.

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


This content is provided by our sponsor. It is not written by and does not necessarily reflect the views of Education Week's editorial staff.
IT Infrastructure & Management Webinar
From Chaos to Clarity: How to Master EdTech Management and Future-Proof Your Evaluation Processes
The road to a thriving educational technology environment is paved with planning, collaboration, and effective evaluation.
Content provided by Instructure
Special Education Live Online Discussion A Seat at the Table - Special Education: Proven Interventions for Academic Success
Special education should be a launchpad, not a label. Join the conversation on how schools can better support ALL students.
Special Education K-12 Essentials Forum Innovative Approaches to Special Education
Join this free virtual event to explore innovations in the evolving landscape of special education.

EdWeek Top School Jobs

Teacher Jobs
Search over ten thousand teaching jobs nationwide — elementary, middle, high school and more.
View Jobs
Principal Jobs
Find hundreds of jobs for principals, assistant principals, and other school leadership roles.
View Jobs
Administrator Jobs
Over a thousand district-level jobs: superintendents, directors, more.
View Jobs
Support Staff Jobs
Search thousands of jobs, from paraprofessionals to counselors and more.
View Jobs

Read Next

Special Education How to Make Gifted Programs More Equitable
Experts discussed new, equitable models for advanced education, moving away from traditional "gifted and talented" programs.
6 min read
Student in classroom who is focused and working hard.
Special Education Video Students With Disabilities 'Have Gotten Their Dignity Back' at This High School
A state partnership involving 16 schools aims to ensure that students with disabilities spend more of their time in mainstream classrooms.
3 min read
Special Education Video How One School Fosters Belonging for Students With Disabilities
The school transformed what has traditionally been a model of exclusion in U.S. education.
3 min read
Kindergarten students in Washington, D.C. explore various activity centers in their classroom on Tuesday, April 4, 2017.
Kindergarten students in Washington, D.C. explore various activity centers in their classroom on Tuesday, April 4, 2017.
Allison Shelley/EDUimages
Special Education Why Special Education Teachers Quit—and What Schools Are Doing About It
States and districts take creative approaches to retain special education teachers.
5 min read
men and women entering and exiting open doorways on an isolated blue background