On Tuesday January 12, the Interagency Autism Coordinating Committee (IACC) held its first full committee meeting of 2016. The IACC is an advisory committee to the U.S. Department of Health and Human Services. It works across federal agencies to coordinate autism-related research and services in consultation with the autism community.
IACC Chair Bruce Cuthbert, acting director of the National Institute of Mental Health, opened the meeting.
View the full meeting agenda and list of speakers here.
Like all IACC full committee meetings, the day featured a public comment period. A father of a child with autism urged the IACC to support further research exploring autism’s brain-gut connection. (Learn more about related Autism Speaks-funded research here.)
Other parents called for the IAAC to recognize how recent changes to the Medicaid Home & Community Based Services (HCBS) program are creating difficulties for those with autism. In response, the IAAC voted to form a submcommittee to explore issues of access to and choice of housing.
In written public comments read aloud at the meeting, further research on a possible connection between autism and vaccination received mixed support. While some parents urged further research into a possible link, others pleaded that the IAAC to no longer dedicate time to this matter. (Decades of research have found no such link.)
Learn about submitting public comment and/or registering to give live comment at the next IACC meeting here.
Psychologist James McPartland, of the Yale Child Study Center, updated the committee on Yale’s Autism Biomarkers Consortium for Clinical Trials. While autism is currently diagnosed using information gathered from clinical assessments and parent reports, the goal of ABC-CT is to improve early diagnosis of autism by identifying objective biological signatures, or biomarkers, of autism present before behavioral symptoms appear. This is being done using data from brain imaging, attention-tracking, genetics and other approaches. The goal of earlier identification is earlier intervention that can improve outcomes.
Read more about the ABC-CT study here.
Others researchers in attendance echoed the importance of developing objective measures of autism for earlier detection and intervention. Neuroscientist Karen Pierce, of the University of California, San Diego, described how her lab has used functional brain imaging to distinguish infants who later developed communicative impairments from those who did not. She and other researchers expressed optimism that interventions for those severely impaired by autism will be far more effective if these children can be identified and helped earlier in life.
Another highlight of the meeting was an intense discussion of last year’s US Preventive Services Task Force (USPSTF) “inconclusive” finding on the effectiveness of universal autism screening at 18-month and 24-month well child visits. The American Academy of Pediatrics and autism advocacy groups including Autism Speaks have long urged such universal screening.
In a panel discussion, USPSTF Chair David Goodman joined four autism specialists, including pediatrician Daniel Coury, medical director of the Autism Speaks Autism Treatment Network. Goodman presented how the USPSTF reviews the evidence to develop its recommendations, and why at this time the draft recommendation is that there is insufficient information to recommend universal screening. He emphasized that the “I” rating was not meant to discourage screening, but rather to spur further research on its effectiveness and possible ways to improve screening.
Still, the panel discussion made clear that great concern remains that physicians and health insurers will misinterpret the “I” recommendation as meaning autism screening as optional and of questionable benefit.
“The IACC members were very attentive to the presentations and have a good grasp of the significance of this issue,” Dr. Coury commented. “I feel their input on funding for studies to answer the questions raised by USPSTF will be positive and that more research in this area will be supported.”
View the archived video cast of the full IACC meeting here.
Reported by Autism Speaks advocacy intern Charles Lynch. Lynch is a doctoral student in cognitive neuroscience at Georgetown University.