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Meeting highlights from the Interagency Autism Coordinating Committee

We report on research and legislative advances discussed at the quarterly meeting of the IACC
April 20, 2016

On Tuesday, April 19, the Interagency Autism Coordinating Committee (IACC) convened its quarterly meeting to discuss advances and issues in autism research and legislation.

The IACC is a federal advisory committee that offers guidance to the U.S. Department of Health and Human Services (HHS) and works across federal agencies to coordinate activities in consultation with the autism community. The meetings are open to the public and include a public comment period for pre-registered speakers.

Below are highlights from the meeting:

New National Autism Coordinator
IACC Chair Bruce Cuthbert introduced Thomas Novotny as the newly appointed National Autism Coordinator. An epidemiologist and family physician, Dr. Novotny has a long history as a researcher and currently holds the position of HSS Deputy Assistant Secretary of Health.

“Obama encouraged us to support all of those with autism spectrum disorder, and I’m delighted to be part of this today,” Dr. Novotny said. He promised to “enhance coordination efforts across HHS to better address the needs of people on the autism spectrum.”

Wandering and benefits programs advance
During the morning legislative discussions, Stuart Spielman, Autism Speaks’ senior policy advisor and counsel, presented updates on federal and state policies affected the autism community.

Mr. Spielman noted that the Office of Personnel Management, which manages the Federal Employees Health Benefits Program, has directed its carriers to include coverage of applied behavior analysis (ABA) starting next year. The program is the nation's largest employer-sponsored health benefits program, covering 8.2 million federal employees, retirees and dependents. (For more information, see our related news report here.)

Mr. Spielman also updated the committee on the progress of the safety and wandering legislation known as Kevin and Avonte’s Law, which recently passed a key Senate Judiciary Committee. He also shared the news that state ABLE legislation has now been enacted by more than 40 states.

Public comment
The following speakers participated in the meeting’s public comment period:

Nathan Olson described how he owed his academic success to the Autism Spectrum Navigators Program, at Bellevue College, Washington. “I was diagnosed with autism at age 22,” he said, “and that diagnosis changed the course of my life and transformed my perception of self.” Mr. Olson described how he had experienced tremendous academic failure before the diagnosis. After the diagnosis, he said, Bellevue College’s “Navigators” autism support program “gave me the opportunity to fulfill the dream of graduating from college.”

Dorothy Strickland, of Virtual Reality AIDS, Inc., described her development of a multimedia tool to train psychology students how to diagnose autism spectrum disorder. She asked the committee for guidance on how best to get her tool into the hands of those who could benefit from it. Read more about the tool here.

Karen Heffler, an ophthalmologist and mother of a 24-year-old with autism, discussed how her review of scientific literature has led her to conclude that early exposure to electronic screen media contributes to the development of autism in children predisposed to the condition. “Research is desperately needed in this area,” she said. The American Academy of Pediatrics recommends against screen viewing for children under age 2, she noted, adding that the recommendation is widely ignored.

Lisa Wiederlight, executive director of SafeMinds and the mother of a 15-year-old with autism, criticized the recent autism prevalence update from the Centers of Disease Control and Prevention (CDC). The report found that autism’s estimated prevalence had remained unchanged – at 1 in 68 – since two years previous. “This defies human observation,” she said. Ms. Wiederlight called on the CDC to use more accurate methods for estimating the conditions prevalence in the U.S. (For more on the new prevalence report, see “CDC's update on autism: What you need to know.”)

The full text of the public comment period’s oral remarks can be found here. Written public comment sent for distribution to the committee can be found here.

Research updates
The afternoon’s sessions involved updates on studies of particular interest to the committee and autism community

Bolting and auditory sensitivity
Pediatrician Paul Lipkin and public-health specialist Kiely Law, of the Interactive Autism Network (IAN), presented the preliminary findings of a new study on auditory hypersensitivity as a trigger for bolting or wandering. This research is a follow-up study growing out of IAN’s earlier autism and wandering online survey. (See slide below.)

In this follow-up survey with 814 parents of children with autism:

* More than 77 percent reported that their child had hypersensitivity to particular sounds.

* Nearly half of these parents (42 percent) reported that their children tried to run away from the sound.

* More than half (63 percent) reported that related problems occurred weekly.

* Just over a quarter (26 percent) reported daily problems.

* Overall, the majority of parents reported that they had not found a satisfactory solution to the problem.

* And in a surprise finding, nearly a third (30 percent) of parents reported that certain sounds could trigger seizures in their child.

As part of the wandering update, Wendy Fournier, of the National Autism Association, discussed the urgent need for better solutions for autism-related wandering, noting the tremendous danger. Records suggest that wandering incidents prove deadly nearly a third of the time (31 percent) when they involve children with autism age 13 or under.

Adult therapies for autism
Shaun Eack, of the University of Pittsburgh School of Social Work, reported on the promising early results of his Autism Speaks-funded clinical study on the effectiveness of cognitive enhancement therapy for young adults who struggle with autism-related behaviors. He noted the dearth of research on autism interventions for adults. The cognitive enhancement approach combines therapeutic computer games that exercise attention and problem solving with small group coaching centers partly led by the participants.

As an early indicator of the program’s success, Dr. Eack noted a rise in employment rate among study participants from 20 percent at the beginning of the 18-month intervention to more than 60 percent at the study’s end. This contrasted to no change in unemployment rate in a comparison group that received emotional management training. (See slide below.)

Transcranial magnetic stimulation
John Robison
, a self-advocate and neurodiversity scholar at the College of William and Mary, discussed his experience participating in studies evaluating transcranial magnetic stimulation (TMS) as potential autism therapy. He noted the stark difference between the academic report that resulted from the research and his personal experience. “The life-changing experiences I and other have had with TMS were due to what the researchers would have called side effects,” he said. In their study, the researchers measured behavioral and perceptual changes immediately after the TMS sessions, he noted. In contrast, the emotional insights he experienced were often hours or days later. (To learn more about TMS and autism, see “Transcranial magnetic stimulation for autism: Evidence of benefit?

Autism BrainNet
During closing remarks, Autism BrainNet Director David Amaral reported on its collaborative efforts with the NIH NeuroBioBank. Autism BrainNet is a collaborative program of the Simons Foundation and Autism Speaks. The collaboration aligns two of the world’s largest repositories of donated postmortem brain tissue for medical research. “We are discussing methods for distributing tissue that is now coming in at greater pace,” he said. “This is turning out to be a very successful public-private collaboration. (To learn more, see “NIH and Autism BrainNet align resources for brain research.”)

The next quarterly meeting of the IACC will be July 19, 2016.

In the coming week, a full webcast of the April 19 meeting will be archived and available for viewing here.