When Congress reconvenes in September, very few days will remain to reauthorize and extend one of the most impactful pieces of bi-partisan federal health research legislation in recent history: the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act (H.R. 7213/S. 4762). Failure to reauthorize CARES by a hard September 30 “sunset” date will effectively end an effort, and billions of dollars of taxpayer investment, which transformed autism focused science research, training, and data collection from a hodgepodge of under-scaled, privately funded studies into a fast-growing, successful field of study in science and public health. Federal investment in a portfolio of autism research priorities involving autism screening, biology, genetics and environment, interventions, services and supports, health across the lifespan, and data gathering, was necessary when the legacy legislation passed in 2006, and the work remains a priority for millions of Americans today. Consider that in 2006, the rate of diagnosis was 1 in 110 births. It is 1 in 27 today, according to a 2023 CDC study. 2-3% of our total population are estimated to qualify for an autism diagnosis. That’s 7 to 10 million autistic people in communities across America and, with profound autism representing a quarter of the total,1.75 to 2.5 million profoundly autistic community members.
Federal efforts focused on autism research started with initiatives included in the Children’s Health Act of 2000, signed into law by President Bill Clinton. A landmark legacy “single disorder” autism focused bill, the CAA, later renamed CARES, was signed by President George W. Bush in 2006. Since then, Presidents Obama (twice), and Trump have signed CARES Reauthorization legislation. Each of these signings produced law that dramatically improved the original legislation by including more and varied stakeholders (federal agencies. advocates, underrepresented groups). The evolving law also built on emerging understanding of autism to increase the depth and breadth of research topics, aiming for a more diverse and balanced range of stakeholder priorities; improved accountability and efficiency; expanded professional training; and better data infrastructure.
However, the 2019 law does need serious revision, especially regarding the issue of broad, overt discrimination in research and supports experienced by people living with “profound autism”, a non-diagnostic term used by many stakeholders to identify and acknowledge adolescents and adults living with a combination of autism, significant intellectual disability, and/or serious communication impairment that demands 24/7/365/lifetime caregiver support. Profoundly autistic people represent 26% of the total autism population but participate in only 6% of autism research studies. The House reauthorization bill includes language that will begin to address this discrimination – it must remain in the final legislation.
Largely due to CARES funded efforts, we have learned a great many things about autism. Autism is no longer considered a rare, monolithic childhood disorder or condition. Importantly, we now know that the millions of Americans who qualify for an autism diagnosis, their families and carers, researchers, professionals, and providers have many valid, incredibly diverse, and often oppositional, service and support preferences and public policy priorities. All of these priorities need continued federal focus and action. The Interagency Autism Coordinating Committee, an agency within HHS funded through CARES, works incredibly hard to successfully forge stakeholder consensus and advance progress and accountability on the critical issues.
I am the parent of a profoundly autistic adult and a long-time volunteer advocate for effective, and equitable autism policy and programs. I know that CARES directed and funded efforts are absolutely essential, even when I strongly disagree with a particular initiative or think the IACC is not addressing a critical issue (like profound autism exclusion.) I feel this way because I clearly remember the struggle many like me experienced as young parents trying to raise money for autism research in the pre-CAA/CARES 1990’s. Outside of a handful of private, non-profit funded clinician/researchers, few (if any) universities, hospitals, or research groups had interest in studying autism. The primary reason these organizations cited for avoiding autism work was the absence of adequate federal funding to build institutional scale research, training, and data focused efforts. Autism research was not a career path that physicians, scientists or professionals considered particularly attractive…or even viable.
Congress changed all that by passing a remarkable piece of bi-partisan autism focused legislation in 2006, and again in 2011, 2014, and 2019. We now need a CARES bill on President Biden’s desk before September 30. A return to the bad, old pre-CARES days will be a disaster for the entire autism stakeholder community. Nearly every member of Congress over the last two decades deserves thanks for creating CARES. Many have been deeply involved and committed. It is a great achievement in public health. Please don’t let CARES expire. Time is extraordinarily short. Please contact your elected officials and ask for them to support profoundly autistic people and their families.
Gene Bensinger
Board Member and Chair, Public Policy Committee
Take Action on Autism CARES Here