Federal autism committee names new members | Spectrum
Editor’s note
We updated this story on July 7th to include comments from Helen Tager-Flusberg.
The US government today announced the latest version of the Interagency Autism Coordinating Committee (IACC), the body of academics and lawyers that helps prioritize government-funded autism research and services.
The committee plans to hold a virtual public meeting on July 21-22, the first IACC meeting since July 2019. Based on input from the new IACC members, the meeting will include sessions on how the coronavirus pandemic and racial inequalities are emerging Impact on Autism Research, IACC Executive Secretary Susan Daniels wrote in an email to Spectrum.
The new IACC consists of 22 public members – 2 of whom were on the previous committee – and 23 representatives from various federal agencies. Public members include researchers, clinicians, autistic advocates, parents of people with autism, and representatives of autism and disability organizations. (One member, Paul Wang, is employed by the Simons Foundation, Spectrum’s parent organization.)
Seven of the public members – nearly a third – are autistic, which is a “dramatic change” from previous IACC cadres, says Sam Crane, legal director of the Autistic Self Advocacy Network (ASAN) and a returning IACC member. One new member is more likely to communicate by typing than speaking, and another has an intellectual disability, she says.
“It’s really good that we’re increasing the number of voices at the IACC,” says Crane. “It could be a really good opportunity to talk about doing better research on communication aids.”
In addition to Crane, Julie Lounds Taylor, Associate Professor of Pediatrics at Vanderbilt University Medical Center in Nashville, Tennessee, will remain on board.
Funding priorities:
The Autism CARES Act of 2019 provides $ 369.7 million in federal annual spending on autism through 2024, an increase from the $ 260 million described in the 2014 version of the act. It also requires that the IACC include at least three autistic people, three parents or guardians of an autistic person, and three representatives from research, advocacy, or service organizations – an increase of two members in each group.
Four federal agencies have joined the committee for the first time: the Department of Housing and Urban Development, the Department of Labor, the Department of Veteran Affairs and the Department of Justice, which will offer expertise on interactions between autistic and police officers, according to a press release.
“We are excited to welcome the largest, most diverse IACC yet, with a wider representation of perspectives from the entire autism community than ever before,” said Daniels wrote in an email to Spectrum.
Daniels is also serving as acting national autism coordinator after previous coordinator Ann Wagner retired on June 30th.
The addition of the new agencies could help the IACC, and in a broader sense the government can meet urgent needs for people with autism like housing, says Helen Tager-Flusberg, Professor of Psychology and Brain Sciences at Boston University and newly appointed public member.
“It is really a privilege to serve,” says Tager-Flusberg. “I hope we really get the ears of the people who need to hear what the community really needs, both in terms of advancing science and the very real and neglected needs of the community.”
While increasing autistic representation in the IACC is important, the group should also focus on shifting federal funding to areas that many autistic people see as priorities, such as adult autism and long-term services and support.
“Representation isn’t the end of the story,” she says. “If you change the committee, hopefully you can also change the tone of the conversation.”
Quote this article: https://doi.org/10.53053/YAWT7600
