Note: In 2006, Congress and the president enacted the Combatting Autism Act, intended to expand and intensify national efforts around autism. By 2014, the Combatting Autism Act was reauthorized as the Autism CARES Act. The Act is again coming up for reauthorization, allowing an opportunity to re-focus the legislation around the most urgent national priorities.
January 10, 2024
Senator Bob Menendez
Congressman Chris Smith
via email
Re: Autism CARES Act Reauthorization— Concerns and Request for a Meeting
Dear Senator Menendez and Congressman Smith,
National Council on Severe Autism advocates for the growing population of Americans affected by severe and profound autism. We and our large community of members in New Jersey are deeply grateful to both of you for your leadership on matters relating to the growing national crisis around autism spectrum disorders.
The Autism CARES Act is now up for authorization, and we urge you to use this opportunity to take a more aggressive stance regarding the autism crisis that is gripping the nation. We lament the reality that over the past 18 years the CARES Act and its predecessor Combating Autism Act, despite all best intentions, has failed to move the needle on our country’s top autism priorities: the desperate need to find causes of autism, to prevent autism, to treat autism, and to create a continuum of support options for those disabled by autism.
Figure 1: Prevalence per 100 for years 1967-2020, as seen in various U.S.-based studies. Autism was first identified as a “uniquely different” disorder in 1943 but did not notably increase in prevalence until the early 1990s. Diagnostic substitution and awareness have never been demonstrated to explain the explosive rise of this serious mental disability.
In many ways our nation’s quest for scientific advancement in the face of growing rates has pushed into reverse, as the needs of the surging population of Americans disabled by autism have been marginalized by agencies’ embrace of new narratives around neurodiversity. While we have no problem with neurodiversity goals of acceptance and inclusion, the social-justice framing of autism has fueled an unmistakable stagnation and defeat that now pervades federal efforts around autism—all at a time when we should be turbo-charging our quest for answers, particularly for those with complex behaviors, cognitive impairment and medical needs. Moving forward, Congress and federal agencies must explicitly prioritize the needs of this community. (We also note with alarm that the NIH recently proposed to erase “reducing disability” from its mission statement, threatening a broad undermining of CARES and other urgent public health objectives.)
Figure 2: California keeps the best autism data in the nation owing to its unique developmental services statute. Despite stringent requirements for entry into the system, autism caseloads and prevalence have been increasing each year, driven by ever-larger numbers of children with this neurodevelopmental abnormality.
Eighteen years ago at the dawn of the 2006 Combating Autism Act, autism rates among children did not reach 1% according to the CDC. Today, we are quickly approaching 3%, with few signs of a plateau (Figure 1). The reality of this exponential growth can be seen clearly in California’s developmental disability system, which only serves the more substantially disabled sector of the autism population (Figure 2). All available data compel one conclusion: this is a time for bold action. Families are desperate. Schools and care systems are flooded. Waitlists are longer. Clinics and emergency rooms are overwhelmed. The Autism CARES Act should be re-invented to address today’s autism realities before it is reauthorized.
We fully support the proposals set forth by the Autism Science Foundation (attached with this letter), namely:
Creation of a new NIH entity, the Office of Autism Research (OAR), and elimination of the IACC.
Creation of an Office of National Autism Policy Coordination (ONAPC), directed by an individual appointed by the President and confirmed by the Senate. The ONAPC should be required by statute to draft and annually update a national plan relating to the federal response to the national autism crisis.
The development of a patient standard of care for the medical treatment of persons with profound autism, and the investigation and treatment of co-occurring medical conditions.
Grant programs and GAO recommendations calculated to remove both cost and geographic barriers and attain a uniform baseline care coverage across the United States.
In addition, we believe the CARES Act should also emphasize the funding of research to finally pinpoint the still-mysterious causes behind this devastating epidemic of neurodevelopmental pathology. We believe the statute should explicitly prioritize genetics-environment interactions in autism’s unexplained heritability. We can ill afford to throw more money at repetitive and failed genetic and environmental hypotheses. Autism has grown to become a major threat to our economy and national security; we must bend the curve.
Thank you for your enduring support for the autism community and for your consideration of our comments. We would greatly appreciate the opportunity to meet with you to discuss these matters further, and we can be reached at jill.escher@gmail.com.
Very truly yours,
Jill Escher
President
Cc: Alison Singer, Autism Science Foundation
Craig Snyder, IKON Consulting
Scott Badesch
Judith Ursitti, Profound Autism Alliance
Stuart Spielman, Autism Speaks
Ashley Kim Weiss, Together for Choice
Gayle Gerdes, Health Policy Source
Sarika Agrawal, The Brain Foundation
NCSA — New Jersey
Attachment: Autism Science Foundation CARES Act White Paper