A federal committee charged with guiding the nation’s priorities on autism remains in disarray nearly a year and a half after Congress reauthorized it.

The panel known as the Interagency Autism Coordinating Committee — comprised of federal officials and members of the autism community — is tasked with advising the secretary of health and human services and coordinating federal activities related to the developmental disability.

The IACC last met in July 2019 and every member of the panel saw their term expire at the end of that September. Congress renewed the committee in a version of the Autism CARES Act, which took effect in October 2019, and nominations for new members were accepted between Nov. 19, 2019 and Feb. 21, 2020.

This past September, officials with the National Institute of Mental Health’s Office of Autism Research Coordination, which manages the IACC, indicated that they were working to seat a new committee and hoped to do so in fall 2020.

To date, however, that hasn’t happened and the process appears stalled again, this time by the changeover to a new administration.

“We anticipate that the IACC’s new members will be appointed by the new secretary of health and human services when he or she is appointed, and that the committee will resume meetings in 2021,” Susan Daniels, director of the NIMH Office of Autism Research Coordination, told Disability Scoop. “Last year was an unusual year, with the coronavirus pandemic impacting some operations, but we hope that the appointments will be made in the near future. The same nominees are going to be considered under the new administration.”

The delay comes as the IACC was set to expand. Under the latest version of the Autism CARES Act, the number of self-advocates, parents and autism group representatives on the panel will grow from two to three each. The law also calls for the IACC to add members from the U.S. Departments of Labor, Justice, Veterans Affairs and Housing and Urban Development.

Alison Singer, who is president of the Autism Science Foundation and served three terms as a member of the IACC off and on between 2007 and 2019, said it’s not uncommon to see a lag in forming a new IACC, particularly when there is a new administration. But, she said, it’s more important than ever to have a committee in place amid the ongoing COVID-19 pandemic.

“That said, the autism community is working together in a coordinated way to accomplish necessary goals, like improving access to vaccines for people with autism and their caregivers and service providers,” said Singer who served the longest of any IACC public member. “But, frankly, this is only possible because of the relationships that were formed on the IACC, and this can only last so long. There’s a new administration now and the IACC public members need to develop relationships with the new government staffers, as well as continue important conversations about the interests, goals and values of different advocacy organizations.”

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