In a historic move toward enhancing autism research and services across the United States, the U.S. House of Representatives has passed the Autism CARES Act of 2024, authorizing $1.95 billion in funding for autism-related research and reworking the structure and priorities of the Interagency Autism Coordinating Committee (IACC). This bill, passed on September 18 by a commanding 402-13 vote, marks a significant step forward in how the nation addresses autism spectrum disorder (ASD), particularly with a renewed focus on individuals with profound autism, a group often underrepresented in both research and support services.
The Autism CARES Act of 2024 aims to redefine the federal approach to autism by supporting research that reflects the full spectrum of individuals with ASD. It emphasizes not only the importance of understanding autism but also ensuring that the services provided meet the needs of those who require more intensive support, including those with co-occurring conditions. This broadening of research goals is essential for developing interventions and services that promote the safety, well-being, and full integration of individuals with autism into society.
A More Inclusive Approach to Autism Research
Historically, autism research in the U.S. has largely focused on individuals with “high-functioning” autism or Asperger’s syndrome, leaving those with more profound forms of autism without adequate representation. For decades, this narrow focus has limited the understanding of the diverse needs of people with autism, particularly those who face significant intellectual and developmental challenges.
One of the key provisions of the Autism CARES Act of 2024 is the expansion of research priorities to include individuals with more severe forms of autism, particularly those with profound autism. This includes individuals with an IQ of less than 50, many of whom are minimally verbal or non-verbal, and may face additional challenges such as co-occurring medical, developmental, or mental health conditions. The bill aims to ensure that the needs of this group are adequately represented in scientific research, which has often overlooked them.
According to the Centers for Disease Control and Prevention (CDC), roughly 27% of individuals diagnosed with autism have profound autism. This group represents a significant portion of the autism population but has often been excluded from the research that shapes national policies and healthcare initiatives. The Autism CARES Act of 2024 seeks to correct this oversight by broadening the definition of autism research to encompass all individuals on the spectrum, ensuring a more holistic approach to addressing the needs of those with profound autism.
This shift is especially important in the context of autism research funding. Advocates have long pointed out that profound autism has not been adequately represented in studies, leading to a lack of tailored interventions and services. With the Autism CARES Act of 2024, researchers are now mandated to ensure that profound autism is more prominently featured in studies, with a focus on improving services and supports for these individuals. Autism research funding is now being allocated to better understand the unique challenges faced by those with profound autism, which is a step toward more effective and inclusive research.
Advocates Push for More Comprehensive Action
Despite the bill’s broader focus, many advocates argue that the legislation still doesn’t go far enough in guaranteeing that profound autism is prioritized in both federal autism research funding and policy decisions. Critics point out that while the bill mandates research that reflects the diversity of autism, including individuals with profound autism, there is still a significant gap between the numbers of individuals with profound autism and their representation in research.
Jackie Kancir, the executive director of the National Council on Severe Autism, has been an outspoken critic of the current state of autism research. Kancir highlighted a key problem: despite billions of dollars being invested into autism research funding, studies often fail to include individuals with profound autism. She pointed out that only about 2% to 6% of research participants in autism studies have profound autism. This is particularly concerning given that individuals with profound autism represent some of the most marginalized groups within the autism community. These individuals, who face significant communication barriers and may require constant care and support, are often left behind in both the research and policy-making processes.
Kancir emphasized that profound autism should not be an afterthought in autism research but should be a focal point, given the unique challenges faced by this population. “Only by ensuring these individuals are included in research can we develop better services, therapies, and policies that truly address their needs,” Kancir said.
The Autism CARES Act of 2024 increases autism research funding to support studies that include individuals with profound autism. While the bill marks an important step, many advocates argue that additional steps are needed to ensure that these individuals have the resources and research attention they deserve. The increased funding is expected to go toward a broader range of services and studies to better support individuals with all levels of autism.
Optimism and Compromise: A Step in the Right Direction
While the expanded language of the Autism CARES Act of 2024 is seen as a positive step by many advocates, there is a sense of cautious optimism rather than full celebration. Alison Singer, president of the Autism Science Foundation, acknowledged the progress made through the passage of the bill but expressed disappointment that the final version did not go as far as some had hoped in ensuring that profound autism is prioritized in autism research funding and policy decisions.
Singer, however, noted that the bipartisan support for the bill represents a growing recognition of the importance of autism research across the entire spectrum, not just for individuals who are more visible in the research community. She praised the efforts of advocates from various sides of the political spectrum who lobbied for the bill and said that the passage of the Autism CARES Act of 2024 showed that both Republicans and Democrats are increasingly willing to support those with autism, including the most severely impacted individuals.
“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 stated.
This spirit of compromise and collaboration is seen as a key part of the bill’s success. The Autism CARES Act of 2024 passed with broad support, a reflection of the growing bipartisan awareness of the need for inclusive and comprehensive autism research and services. The fact that advocates from across the political spectrum were able to come together to support this legislation provides hope for future efforts to ensure that all individuals with autism receive the attention, care, and resources they deserve.
The Road Ahead: More Work to Be Done
The Autism CARES Act of 2024 was introduced by Rep. Christopher Smith, a Republican from New Jersey, and represents a critical moment in autism advocacy. It was initially introduced in February and was filed in its final form in July before being passed by the House in September. Smith’s leadership on the bill was instrumental in securing the funding and reworking the priorities of the IACC, the federal body responsible for coordinating autism research and advising the U.S. Department of Health and Human Services.
But while the bill is a landmark achievement, many advocates argue that the work is far from over. There is a growing consensus that further efforts are needed to ensure that profound autism receives the attention it deserves, not just in research but also in policy decisions related to healthcare, education, and social services. Advocates are already planning future lobbying efforts aimed at the relevant federal agencies to ensure that they fully implement the intent of the law and prioritize those with profound autism in the coming years.
As the autism advocacy community prepares for this next phase, there is hope that the Autism CARES Act of 2024 will pave the way for more inclusive and equitable autism policies. In the coming months and years, continued advocacy will be crucial to ensuring that the needs of individuals with profound autism are met in a way that promotes their full participation in society.
In conclusion, the Autism CARES Act of 2024 represents a major investment in autism research and services, but it also highlights the ongoing challenges that still exist for individuals with profound autism. The passage of the bill is an important step, but it is clear that more work remains to be done. Through continued advocacy and bipartisan support, there is hope that profound autism will finally receive the attention it deserves, leading to a more inclusive and supportive future for all individuals on the autism spectrum.
