Newly Passed Autism CARES Act Recognizes Full Spectrum
(September 18, 2024 – New York, NY) The Autism Science Foundation today applauded the passage of the Autism CARES Act of 2024 by the United States House of Representatives. This new bill significantly updates and improves the foundational federal law governing our national response to autism and re-authorizes federal funds to be spent on autism research.
Specifically, the new bill expresses a clear intent of Congress to end the invidious discrimination against those suffering the effects of profound autism. Currently, only 6% of federal autism research includes people with profound autism, despite CDC reports showing that 26.7% of autistic individuals in the US meet the definition of profound autism. The new bill offers federal public health agencies and the Interagency Autism Coordinating Committee (IACC) the opportunity to correct years of discrimination by adding new members to the IACC who are parents of profoundly autistic individuals and/or scientists who study profound autism; by championing research to understand the causes of profound autism and developing targeted biomedical treatments; and by insisting that NIH-funded autism research not continue to exclude people with intellectual disability.
The bill includes language throughout the text, mandating inclusivity of research and other work by the federal government on autism across the entire spectrum, including those with the greatest needs who have profound autism.
The 2024 Act requires that research and the subsequent report to Congress by the Secretary of HHS:
“reflects the entire population of individuals with autism spectrum disorder, including those individuals with co-occurring conditions and the full range of needs for supports and services, including such supports and services to ensure the safety, and promote the well-being, of such individuals.’’
On the occasion of this congressional action, Autism Science Foundation President, Alison Singer said, “I had hoped for more in this bill; a more crystal clear mandate for an appropriate degree of federal effort on profound autism, both its biology and its lifelong impacts, but 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 continued, “I want to thank every member of Congress who supported this legislation, but particularly House Energy and Commerce Committee Chair Cathy McMorris Rodgers, and Ranking Member Frank Pallone, and principal House sponsor, Chris Smith, along with their most able staffers —especially Molly Brimmer and Shana Beavin of the House Committee staff — who truly labored tirelessly to include the needs of those with profound autism in the law, and who ultimately forged the basis for an incremental, but meaningful victory. This bill represents both bipartisan efforts and compromise with other viewpoints within the broader autism spectrum community.”
ASF also wants to highlight and thank the parents and other caregivers of profoundly autistic Americans, who took time and energy they really don’t have away from the 24/7 needs of their autistic loved ones to meet with and otherwise reach out to members of Congress and make sure our legislators understood the justice and public policy imperatives for the inclusion of amendments to the bill aimed at addressing the needs of people with profound autism.
Lastly, Singer said, “I also want to thank the other organizations in the profound autism space who worked alongside the Autism Science Foundation with the common objective of the inclusion of profound autism in this year’s reauthorization of the CARES Act, particularly the Profound Autism Alliance and the National Council on Severe Autism.”