The U.S. House of Representatives has passed a bill that authorizes $1.95 billion in funding for autism-focused research and reworks the focus of the Interagency Autism Coordinating Committee (IACC).
The bill reworks existing law to support research that “reflects the entire population of individuals with autism spectrum disorder.” This includes those with co-occurring conditions and require additional services that “ensure the safety, and promote the well-being, of such individuals.”
Some advocates hope that the expanded language will increase the consideration given to those with profound autism and other issues.
The bill, called the Autism CARES Act of 2024, passed on Sept. 18 on a 402-13 vote.
Despite mandating an expansive view of the conditions that make up the autism spectrum, some advocates argue that the bill didn’t go far enough to guarantee that profound autism is prioritized in research funding and federal policy considerations. IACC coordinates efforts within the federal government related to autism and acts as an advisory body to the Secretary for the U.S. Department of Health and Human Services.
“Despite all of these billions of dollars that we’re investing into autism, only 2% to 6% of research participants included people with profound autism, which is really a problem, considering this is the most marginalized group that we know of,” Jackie Kancir, executive director for the National Council on Severe Autism, told Autism Business News.
CDC research estimates that 27% of people who have autism have profound autism. Those who have an IQ of less than 50 and are minimally or non-verbal are considered to have profound autism.
Still, the broader language could lead federal agencies to be more mindful of those with profound autism.
Alison Singer, president of the Autism Science Foundation, expressed her disappointment with the bill but noted that the effort to lobby the bill showed bipartisan interest in supporting those who have autism spectrum disorders and a willingness of advocates from various sides to compromise and reach consensus.
That experience inspired an optimistic prognosis from Singer for other advocacy efforts.
“I am happy today to accept the improvements Congress has provided the profound autism community, and move forward towards a vigorous lobbying campaign aimed at the relevant executive branch agencies to ensure their full compliance with both the letter, and the intent of the revised and improved law,” Singer said in a statement.
The bill was sponsored by Rep. Christopher Smith, a Republican from New Jersey. It was introduced in February. The version of the bill that was passed was filed in July.
