A key panel approved a sweeping new autism agenda calling on the government to restructure its priorities and nearly double its investment in the developmental disability.
The Interagency Autism Coordinating Committee, or IACC, voted Thursday to adopt a new strategic plan, the first comprehensive update in more than three years.
The vote came during just the second public meeting of the IACC since U.S. Secretary of Health and Human Services Robert F. Kennedy Jr. reshaped the committee, which is comprised of federal officials and members of the autism community, earlier this year.
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The strategic plan provides recommendations to the secretary of health and human services and is the committee’s primary responsibility. The plan is often relied on by both federal agencies and private organizations.
At more than 330 pages, the new plan departs from the seven-question structure that the IACC previously used and puts less emphasis on genetic research. It includes a major new initiative focused on studying neurodevelopmental regression, additional funding for autism surveillance monitoring and diagnostics workforce training as well as a new effort called the National Autism Precision Therapeutics Initiative that’s “designed to carry science into practice.”
The committee also wants to see a new portal created at autism.gov to connect people with autism and their families to resources similar to existing sites at cancer.gov and alzheimers.gov.
The IACC recommends that the federal government put over $747.4 million toward autism annually, far more than the current allocation of $390.4 million.
IACC Chair Sylvia Fogel said the plan factors comments submitted to the committee over the last decade urging action.
“There are members of our community who are drowning, literally in connection with wandering and elopement …, but also figuratively day to day. I assure you as a clinician and as a parent, that is not hyperbole,” said Fogel, citing challenges ranging from self-injury and aggression to co-occurring medical conditions, mental health issues, long waits for diagnosis and trouble accessing independent living and employment. “They have said so in this committee’s record for a decade. This plan answers them.”
A draft of the strategic plan was initially released in July and Fogel said the IACC has received more than 5,000 comments from the public. However, many of the comments were not posted to the IACC’s website until the day before the panel voted, prompting questions from more than a dozen autism and disability organizations including the Autism Society of America, Autism Speaks, the Autism Science Foundation and the Autistic Self Advocacy Network about how all of the comments could have been adequately considered or factored.
“We are deeply concerned that the Interagency Autism Coordinating Committee (IACC) is shutting the community out of important decisions about autism research and services,” the groups said in a statement noting that the IACC helps guide hundreds of millions of dollars in autism research funding. “All public comment deserves to be heard, and all community feedback deserves real consideration.”
In addition, multiple advocates said that a plain language version of the plan should have been made available and that the significant changes to the strategic plan’s structure compared to previous versions will make it difficult to track trends.
The strategic plan does include a focus on profound autism for the first time. Judith Ursitti, cofounder and president of the Profound Autism Alliance, welcomed that change, but said she wished that the IACC had assigned funding to such needs. She also noted that citations were lacking in the plan, making research claims difficult to verify.
Delancy Allred, public policy director at the Autism Society of America, said that the plan is ambitious.
“We appreciate that the draft recognizes that the needs of autistic people and their families extend across the lifespan and beyond research alone, including healthcare, education, housing, employment, mental health, family supports and quality of life. That is an important and welcome expansion of the conversation,” she said. “At the same time, the plan is extremely extensive. It includes a large number of priorities and initiatives that would require significant federal funding, staffing, infrastructure, data systems and coordination across agencies. We are concerned that the plan does not sufficiently prioritize what the federal government can realistically accomplish.”
