Securing the Future: The Autism CARES Act of 2024 passes in the U.S. House of Representatives

Today, the U.S. House of Representatives has taken a crucial step forward in supporting the autism community by passing the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2024. Over the past two decades, the Autism CARES Act has been a beacon of progress, fundamentally transforming our understanding of autism and reshaping the landscape of support for individuals on the spectrum. Autism Speaks has been proud to play a leadership role in advocating for this extraordinarily important legislation.

The Autism CARES Act of 2024 would build upon the law’s historic legacy by providing $2 billion over the next five years in authorized funding to enhance autism research, data collection and healthcare training benefiting individuals with autism. Thanks to the work of champions in Congress, this next iteration of the law includes enhancements Autism Speaks advocated for, that would expand programming to further address gaps in access to health care, services and supports.

“Since the Autism CARES Act’s landmark passage in 2006, families like mine have benefited enormously from the transformative impact of this law, which has increased our understanding of autism, expanded healthcare training on autism, and led to the development of evidence-based services for individuals with autism across the spectrum and lifespan,” said Keith Wargo, President and CEO of Autism Speaks. 

“We are grateful for the leadership of bill sponsors and Autism Caucus Co-chairs, Representatives Chris Smith and Henry Cuellar for not only championing the reauthorization of this historic legislation but crafting a forward-looking bill that will help spur progress in research, supports, and services for years to come. Since co-founding the Autism Caucus many years ago, Rep. Smith has been a leader on every iteration of this important bill, and we are deeply appreciative of his longstanding work on behalf of the autism community. This is an important day, and while we celebrate House passage, we urge the Senate to quickly take up and pass the Autism CARES Act and send it to the President’s desk prior to the September 30th expiration.”

The current Autism CARES Act expires on September 30, threatening the continuity of critical federal autism programs. With the House having passed the Autism CARES Act of 2024, Autism Speaks is strongly advocating for the Senate to take up the bill quickly before the deadline. Advocates can take action here to join in asking their Senators to support passing the bill. 

Background on the Autism CARES Act of 2024:

Federal initiatives under the Autism CARES Act have not only advanced our scientific knowledge but, more importantly, translated into tangible improvements in the lives of those affected by autism. The Autism CARES Act of 2024 builds upon the progress that has been made under previous iterations of the law. 

One of the most significant additions to the 2024 version of the Autism CARES Act, championed by Autism Speaks, is a requirement that the National Institutes of Health develops an annual budget plan to ensure that future federal autism research will be strategically aligned with the evolving needs of the autism community, offering greater transparency and accountability.

In addition, the Autism CARES Act of 2024 would not only continue existing programs at the National Center on Birth Defects and Developmental Disabilities, National Institutes of Health (NIH) and Health Resource and Services Administration but also expand efforts through updated authorization levels that increase the year over year support of federal autism initiatives and eight enhancements, advocated for and supported by Autism Speaks. This includes provisions that:

1. Encourage research focused on the daily life challenges of autistic people across the lifespan with a new emphasis on autism and aging. 
2. Further efforts for greater inclusivity in research activities, so that studies reflect the full range of needs of support and services to ensure the physical safety and well-being of all autistic people. 
3. Require a report to identify and develop a strategy for expanding the developmental-behavioral pediatrician workforce.
4. Create an Autism Intervention Research Network for Communication Needs (AIR-C) to address how to best support autistic people who are non-speaking or may need additional communication support. 
5. Create a technical assistance program to provide training and assistance in providing individuals with autism and other developmental disabilities with access to evidence-based services, tools and technologies that support communication needs to states, Indian Tribes or Tribal organizations, localities, or territories.
6. Require HHS to develop a Report to Congress on the mental health of autistic people.
7. Increase the minimum number of NIH Autism Centers of Excellence – research networks that have provided us with a much clearer picture of the significant disparities that autistic people experience in terms of access to quality health care, daily life supports and services.
8. Require a professional judgment budget that will provide the autism community and Congress with a transparent plan that outlines a strategic direction and resource needs for autism research for years to come.

Autism Speaks is proud to have led efforts in shaping and advancing this legislation, in partnership with colleague advocacy organizations and the persistent support of autism advocates across the country. We now look to Senate leadership and our Senate bill champions Senators Ben Ray Lujan and Susan Collins to ensure the Autism CARES Act of 2024 is sent to the President’s desk before the law expires on September 30, 2024.

Support our call to the Senate for the bill’s final passage before the September 30 deadline by visiting autismspeaks.quorum.us/campaign/AutismCARES.

Contact Congress about the Autism CARES Act.