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Autism CARES Act of 2024: A Step Forward for Profound Autism Recognition

(September 18, 2024) - The Washington Autism Alliance  commends the United States House of Representatives for passing the Autism CARES Act of 2024. This legislation signifies a substantial advancement in our federal approach to autism, particularly concerning profound autism.A key focus of the bill is to address the historical underrepresentation of profound autism in research and federal initiatives.  The bill encourages federal public health agencies and the Interagency Autism Coordinating Committee (IACC) to rectify this disparity by broadening representation within the IACC and prioritizing research into the causes and potential treatments for profound autism.The 2024 Act incorporates language emphasizing inclusivity across the entire autism spectrum, explicitly acknowledging the needs of those with profound autism.  It mandates that research and subsequent reports to Congress encompass the full range of individuals with autism spectrum disorder, including those with the most severe manifestations.

Arzu Forough,  President and CEO of the Washington Autism Alliance, expressed cautious optimism regarding the bill. While advocating for even stronger mandates for profound autism research, she acknowledged the progress made and pledged continued efforts to ensure full implementation of the law's provisions. Forough extended gratitude to key legislators and their staff for their pivotal roles in shaping the legislation, highlighting the bipartisan collaboration that led to its passage. She also acknowledged the invaluable contributions of parents and caregivers of profoundly autistic individuals who actively engaged with lawmakers to advocate for the inclusion of provisions addressing profound autism. "These advancements would not have happened without our Spokane area advocates, Holly Goodman of The Isaac Foundation, Dr. Anjali Barretto of Gonzaga University, and Amanda Hansen and all those who mobilized in Washington state!" said Forough. The Washington Autism Alliance further recognizes the collaborative efforts of other organizations dedicated to profound autism advocacy, including the Autism Science Foundation, the National Council on Severe Autism and Profound Autism Alliance.

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