Autism CARES Appropriation

 In The Politics of Autism, I discuss the congressional role in the issue.

From Autism Speaks:

We are happy to share that on July 31, 2025, the Senate Appropriations Committee passed a bill and accompanying report – with bipartisan support – that provides funding for these critical federal autism programs at levels called for by the Autism CARES Act. We are grateful to the Committee’s leadership and members for working to deliver on the promise of the Autism CARES Act through this appropriations bill. We are also grateful to Senator Amy Klobuchar who led a letter to the committee requesting funding for these key priorities. This is an important milestone in the annual funding process and as Congress continues to work through fiscal year 2026 appropriation bills, it will be critical for the autism community to continue to let their lawmakers know how important these investments are.

What did the Senate bill include?

The bill and accompanying report detail the specific funding amounts for different federal agencies as well as directions on how those funds should be used during the next fiscal year. It includes:

• $56.344 million for autism research and training programs at the Health Resources & Services Administration. This includes healthcare training through Leadership Education in Neurodevelopmental and Other Related Disabilities (LEND) program sites in every state and Developmental-Behavioral Pediatrics (DBP) Training programs that help address a nationwide DBP shortage.
• $28.1 million for autism programs at the Centers for Disease Control & Prevention, which includes autism prevalence studies through the ADDM Network and outreach efforts that improve early diagnosis and intervention.

It also calls on the National Institutes of Health (NIH) to not only fund autism research at least at the level authorized by the Autism CARES Act of 2024, but also to implement many of the law’s new provisions. Specifically, the committee called on the NIH to:

• Provide an annual budget estimate for autism research based on the Interagency Autism Coordinating Committee’s Strategic Plan, creating a transparent plan that outlines a strategic direction and resource needs for autism research;
• Ensure that autistic individuals across the spectrum, including those with profound autism, are included in research studies;
• Ensure that all research activities for autism follow widely-accepted scientific practices in order to ensure research integrity;
• Ensure that research addresses the underlying biology of autism, co-occurring medical conditions, and treatment and services needs of people with autism;
• Create new pathways for the public to obtain information and comment on autism research activities; and
• Promptly reestablish the Interagency Autism Coordinating Committee (IACC).

Funding Autism CARES

 In The Politics of Autism, I discuss the congressional role in the issue.

KELLY HOOPER and SOPHIE GARDNER at POLITICO:

Advocates from the group Autism Speaks will head to the Capitol today to urge lawmakers to fund recently reauthorized research and service programs in the wake of the GOP megabill’s steep Medicaid cuts.

While the group will acknowledge their concerns about how those cuts could impact autism programs in the states, it plans to focus on the annual appropriations process “since that’s the next thing up, and something that we want to try to ensure that we’re at least maintaining the levels of funding for those programs,” David Sitcovsky, Autism Speaks’ vice president of advocacy, told Lauren.

Congress reauthorized the Autism CARES Act in December, which Autism Speaks says is the primary federal funding source for monitoring, research, services and training programs in the autism community. The law’s programs are spread across the CDC, the Health Resources and Services Administration and the NIH.

The group plans to underscore in their meetings that autism is a lifelong condition — not just a childhood disorder, as often emphasized by Health Secretary Robert F. Kennedy Jr. — for which many people need support as they age.

“It seems like most [of the] conversation about autism has been framed around childhood, and and I think what were really trying to do … is to remind people that [it’s a] lifelong issue, and there are many adults who need better understanding and supportive services now,” said Dr. Andy Shih, Autism Speaks’ chief science officer.

Brick Township

 In The Politics of Autism, I discuss the congressional role in the issue.

Jerry Carino at The Asbury Park Press:

In the mid-1990s, Brick Township residents Bobbie and Billy Gallagher were desperate to find help for their two young children with autism.

“I had started attending a parents’ support group, and it seemed like there were a lot of parents sitting around the table whose children had been newly diagnosed,” Bobbie Gallagher recalled. “So I sent out a survey to parents in the town asking if anybody had a child with autism, because it seemed like there were so many of them.”

Sending out a survey was a lot harder back then, at the dawn of the electronic age.

“We got zero help from the school district with that survey,” Billy Gallagher said. “Although the school district sent home who to vote for in the school-board elections – that made it into kids’ backpacks – our survey would not. But we found the bus drivers and the aides on the buses helpful in distributing it.”

Between that, the bulletin board in the Brick branch of the Ocean County Library, and a small ad in a weekly newspaper, the Gallaghers got enough surveys out to produce eye-opening feedback – 45 Brick residents answered in the affirmative.

New Jersey’s department of health declined to act on the survey, but it got the attention of the Gallaghers’ congressman, Republican Chris Smith, who met with them in September of 1997.

“He said the information we gathered was important and he would take this to the next level,” Bobbie Gallagher said.

In 2000, aided by a public push from NFL quarterbacks Dan Marino and Doug Flutie – both of whom have children with autism – Smith’s bill for autism research became codified in federal law. Those provisions have expanded over a quarter-century, and last month what has become known as the Autism CARES Act was reauthorized by Congress and signed by President Joe Biden. The law funds $1.95 billion over five years for autism research and intervention programs at the National Institutes of Health, Centers for Disease Control, and the Health Resources and Services Administration.

 

President Biden Signs Autism CARES

 In The Politics of Autism, I discuss the congressional role in the issue.

 Yesterday, President Biden signed the Autism CARES Act of 2024 into law.  A release from Rep. Chris Smith (R-NJ):

Comprehensive legislation authored by Rep. Chris Smith (R-NJ) to provide robust funding and enhanced support for Americans with autism was signed into law this week.

Smith’s Autism CARES Act of 2024 will provide more than $1.95 billion over five years for programs at the National Institutes of Health (NIH), Centers for Disease Control (CDC), and the Health Resources and Services Administration (HRSA).

“At CDC, the funding will support ongoing developmental disability surveillance and research; at HRSA, the funding will cover education, early detection and intervention services; at NIH, the funding will drive research as well as the coordination of autism-related activities, including the Inter Agency Coordinating Committee (IACC),” Smith said during debate on the House Floor on December 16th.

“As the prime author of the Autism Cares Act of 2024 and previous iterations of the law in 2011, 2014, and 2019, I know this legislation will help make a huge difference in the lives of the millions of Americans with autism by providing robust funding for durable remedies as well as effective early detection and intervention services to allow them the highest quality of life possible,” Smith said.

“According to the CDC, 1 in 36 children in the United States—including 1 in 35 children in my home state of New Jersey—are on the autism spectrum,” said Smith.

“My legislation pursues critical research goals and focuses on responsive and effective interventions for the estimated 6.8 million individuals with autism—27 percent of whom, or over 1.8 million, are profoundly autistic,” Smith said.

Smith’s bill—with Rep. Henry Cuellar (D-TX) as the Democrat lead and 61 other bipartisan cosponsors—is expected to become law before the end of the year.

“I am pleased to help pass this bipartisan legislation, a bill I championed alongside Congressman Chris Smith (NJ-4), and send it to the President's desk. This bipartisan bill will provide vital funding to expand research and care for Americans with autism,” said Dr. Cuellar, a senior member of the House Appropriations Committee. “Through this bill, we continue important work in understanding the causes of autism, the best ways to treat autism, and incorporate the voices of those previously missed by research.”

Smith’s legislation has received strong support from the nation’s leading autism advocacy groups, including Autism New Jersey, Autism Speaks, the Autism Society, the Profound Autism Alliance, and the Association of University Centers on Disabilities.

The Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2024 will:

· Direct the National Institutes of Health (NIH) to research issues encountered by individuals and caregivers as they age, mental health concerns, issues related to aging, as well as co-occurring conditions and needs for supports and services, such as care necessary for physical safety and the prevention of self-injurious behavior;

· Increase the number of NIH Centers of Excellence to seven and ensure research reflects the entire population of individuals with autism spectrum disorder and is designed to address the full range of needs faced by individuals, including to ensure the physical safety and to promote the well-being of all Americans with autism;

· Include, for the first time, a professional bypass budget to provide the autism community with a comprehensive budget highlighting priority research areas and resources needed to advance quality of life improvements for all individuals with autism; and

· Promote the adoption of assistive communication technologies to improve communications outcomes for those with communication assistance needs.

Smith, who has been a steadfast champion for the autism community for decades, said “it all started in September 1997 with Bobbie and Billy Gallagher from Brick Township and their indomitable commitment to help their two children—Austin and Alanna—and everyone else with autism.”

“We met several times and invited the CDC to Brick only to realize that federal autism programs were woefully inadequate—almost nonexistent,” said Smith, who noted he continues to plan and strategize with the couple to this day.

At Smith’s invitation, federal agencies came to Ocean County for an investigation and found that autism prevalence rates were high not only in Brick, but in nearby communities as well. In response, Smith authored the Autism Statistics, Surveillance, Research and Epidemiology Act, which was incorporated as Title I of the Children’s Health Act of 2000, authorizing grants and contracts for the collection, analysis and reporting of data on autism and pervasive developmental disabilities.

Passage of Autism CARES

 In The Politics of Autism, I discuss the congressional role in the issue.

A December 16 release from Rep. Chris Smith:

Comprehensive legislation authored by Rep. Chris Smith (R-NJ) to provide robust funding and enhanced support for Americans with autism is now headed to the President’s desk to be signed into law after winning overwhelming support in a vote (374-15) on the House Floor today.

Smith’s Autism CARES Act of 2024—which was approved by the Senate in late November—will provide more than $1.95 billion over five years for programs at the National Institutes of Health (NIH), Centers for Disease Control (CDC), and the Health Resources and Services Administration (HRSA).

“At CDC, the funding will support ongoing developmental disability surveillance and research; at HRSA, the funding will cover education, early detection and intervention services; at NIH, the funding will drive research as well as the coordination of autism-related activities, including the Inter Agency Coordinating Committee (IACC),” Smith said during debate on the House Floor.

“As the prime author of the Autism Cares Act of 2024 and previous iterations of the law in 2011, 2014, and 2019, I know this legislation will help make a huge difference in the lives of the millions of Americans with autism by providing robust funding for durable remedies as well as effective early detection and intervention services to allow them the highest quality of life possible,” Smith said.

“According to the CDC, 1 in 36 children in the United States—including 1 in 35 children in my home state of New Jersey—are on the autism spectrum,” said Smith.

“My legislation pursues critical research goals and focuses on responsive and effective interventions for the estimated 6.8 million individuals with autism—27 percent of whom, or over 1.8 million, are profoundly autistic,” Smith said.

Smith’s bill—with Rep. Henry Cuellar (D-TX) as the Democrat lead and 61 other bipartisan cosponsors—is expected to become law before the end of the year.

“I am pleased to help pass this bipartisan legislation, a bill I championed alongside Congressman Chris Smith (NJ-4), and send it to the President's desk. This bipartisan bill will provide vital funding to expand research and care for Americans with autism,” said Dr. Cuellar, a senior member of the House Appropriations Committee. “Through this bill, we continue important work in understanding the causes of autism, the best ways to treat autism, and incorporate the voices of those previously missed by research.”

Smith’s legislation has received strong support from the nation’s leading autism advocacy groups, including Autism New Jersey, Autism Speaks, the Autism Society, the Profound Autism Alliance, and the Association of University Centers on Disabilities.

The Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2024 will:

· Direct the National Institutes of Health (NIH) to research issues encountered by individuals and caregivers as they age, mental health concerns, issues related to aging, as well as co-occurring conditions and needs for supports and services, such as care necessary for physical safety and the prevention of self-injurious behavior;

· Increase the number of NIH Centers of Excellence to seven and ensure research reflects the entire population of individuals with autism spectrum disorder and is designed to address the full range of needs faced by individuals, including to ensure the physical safety and to promote the well-being of all Americans with autism;

· Include, for the first time, a professional bypass budget to provide the autism community with a comprehensive budget highlighting priority research areas and resources needed to advance quality of life improvements for all individuals with autism; and

· Promote the adoption of assistive communication technologies to improve communications outcomes for those with communication assistance needs.

Smith, who has been a steadfast champion for the autism community for decades, said “it all started in September 1997 with Bobbie and Billy Gallagher from Brick Township and their indomitable commitment to help their two children—Austin and Alanna—and everyone else with autism.”

“We met several times and invited the CDC to Brick only to realize that federal autism programs were woefully inadequate—almost nonexistent,” said Smith, who noted he continues to plan and strategize with the couple to this day.

At Smith’s invitation, federal agencies came to Ocean County for an investigation and found that autism prevalence rates were high not only in Brick, but in nearby communities as well. In response, Smith authored the Autism Statistics, Surveillance, Research and Epidemiology Act, which was incorporated as Title I of the Children’s Health Act of 2000, authorizing grants and contracts for the collection, analysis and reporting of data on autism and pervasive developmental disabilities.

House Passes Autism CARES

 In The Politics of Autism, I discuss the congressional role in the issue.

 A release from Rep. Chris Smith (R-NJ):

The House of Representatives today overwhelmingly passed (402-13) new comprehensive legislation (HR 7213) authored by Rep. Chris Smith (R-NJ) to provide more than $1.95 billion to reauthorize and strengthen the United States’ whole-of-government autism spectrum disorder (ASD) initiative through 2029. Smith’s bill—with Rep. Henry Cuellar (D-TX) as the Democrat lead and 61 other bipartisan cosponsors—now heads to the Senate.

Smith, who has authored four major autism laws to date, said his new legislation “will help make a huge difference in the lives of the millions of Americans with autism by providing robust funding for durable remedies as well as effective early detection and intervention services to allow them the highest quality of life possible.”

“With substantive input from advocates in the autism community, my legislation will also help advance key research priorities and ensure enhanced collaboration between federal agencies and families and individuals with autism,” Smith said. 

“This bipartisan bill will provide vital funding to expand research and care for Americans with autism,” said Dr. Cuellar, a senior member of the House Appropriations Committee. “Through this bill, we continue important work in understanding the causes of autism, the best ways to treat autism, and incorporate the voices of those previously missed by research. I would like to thank Representative Chris Smith for his leadership on this important legislation.”

Smith’s legislation—which received unanimous approval from the House Energy and Commerce Committee in a vote (42-0) to send the bill to the House Floor earlier this year—has received strong support from the nation’s leading autism advocacy groups, including Autism Speaks, the Autism Society, the Autism Science Foundation, the Arc of the United States, the Profound Autism Alliance, and the Association of University Centers on Disabilities.

Specifically, the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2024 would:

· Authorize $1.95 billion—including $306 million in annual funding for the National Institutes of Health (NIH); $28.1 million in annual funding for the Centers for Disease Control and Prevention (CDC); and $56.3 million in annual funding for the Health Resources and Services Administration (HRSA);

· Direct the NIH to ensure research reflects the entire population of individuals with autism spectrum disorder, including the full range of cognitive, communicative, behavioral, and adaptive functioning, as well as co-occurring conditions and needs for supports and services, including and especially care necessary for physical safety;

· Increase the number of NIH Centers of Excellence and ensure research reflects the entire population of individuals with autism spectrum disorder and is designed to address the full range of needs faced by individuals, including to ensure the physical safety and to promote the well being of all Americans with autism;

· Include, for the first time, a professional bypass budget to provide the autism community with a comprehensive budget highlighting priority research areas and resources needed to advance quality of life improvements for all individuals with autism;

· Promote the adoption of assistive communication technologies to improve communications outcomes for those with communication assistance needs; and

· Require a report on youth aging out of school-aged services, as well as recommendations to improve mental health outcomes and address related disparities in mental health care for individuals with autism spectrum disorder, including prevention, care coordination, and community-based services.

Smith, who has been a steadfast champion for the autism community for decades, stepped up his involvement on autism in 1997 when Bobbie and Billy Gallagher—parents of two small children with autism—from Brick walked into his Ocean County office looking for help, believing their town had a disproportionate number of students with autism.

In response, Smith brought federal agencies to Ocean County for an investigation—which found that autism prevalence rates were high not only in Brick, but in nearby communities as well—and authored the Autism Statistics, Surveillance, Research and Epidemiology Act, which was incorporated as Title I of the Children’s Health Act of 2000, authorizing grants and contracts for the collection, analysis and reporting of data on autism and pervasive developmental disabilities.

Autism CARES Reauthorization

 In The Politics of Autism, I discuss the congressional role in the issue.

 From the Autism Society:

Background:

The Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act, first enacted in 2006 and signed into law by President George W. Bush, represents a landmark in coordinated federal efforts to address the increasing prevalence of Autism. With the Centers for Disease Control and Prevention (CDC) now reporting that approximately 1 in 36 kids are diagnosed with Autism and 4.5 million adults in America have Autism, the need for a comprehensive approach to Autism has never been more critical. The Autism CARES Act has established crucial programs and committees, including the Interagency Autism Coordinating Committee (IACC) and various initiatives across the Department of Health and Human Services (HHS), aimed at enhancing our understanding and management of Autism.

See our blog to learn more about how this law impacts families and those with Autism.

Issues:

Despite significant advancements in Autism research and services, the rising diagnosis rates underscore the ongoing urgency to bolster federal response. The Autism CARES Act, reauthorized last in 2019, faces a sunset deadline of September 30th, 2024. Without timely reauthorization, the future of these essential programs and the progress they represent is at risk.

Members of Congress must act swiftly to reauthorize and enhance the Autism CARES Act. The continuation and expansion of these programs are not just a matter of policy but a necessity for the countless individuals and families affected by Autism. Together, we can ensure a future where every person with Autism has the opportunity to lead a fulfilling and supported life.


Your Voice Matters:

The House Energy and Commerce Committee unanimously approved the bill on June 12th. The Senate HELP Committee also passed the Autism CARES Act out of committee on a vote of 20-1 on July 31st. The bills will next be considered on the House and Senate floors, likely in early September. Please use this Action Alert to easily message your Members of Congress asking for their support. Your advocacy can make a difference in the lives of millions.

*The template letters are based on your address. Please enter your address to finish sending the Action Alert.*

Autism CARES Reauthorization

 In The Politics of Autism, I discuss the congressional role in the issue.

From the Autism Society:

The Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act, first enacted in 2006 and signed into law by President George W. Bush, represents a landmark in coordinated federal efforts to address the increasing prevalence of Autism. With the Centers for Disease Control and Prevention (CDC) now reporting that approximately 1 in 36 kids are diagnosed with Autism and 4.5 million adults in America have Autism, the need for a comprehensive approach to Autism has never been more critical. The Autism CARES Act has established crucial programs and committees, including the Interagency Autism Coordinating Committee (IACC) and various initiatives across the Department of Health and Human Services (HHS), aimed at enhancing our understanding and management of Autism.

Issues:

Despite significant advancements in Autism research and services, the rising diagnosis rates underscore the ongoing urgency to bolster federal response. The Autism CARES Act, reauthorized last in 2019, faces a sunset deadline of September 30th, 2024. Without timely reauthorization, the future of these essential programs and the progress they represent is at risk.

Members of Congress must act swiftly to reauthorize and enhance the Autism CARES Act. The continuation and expansion of these programs are not just a matter of policy but a necessity for the countless individuals and families affected by Autism. Together, we can ensure a future where every person with Autism has the opportunity to lead a fulfilling and supported life.

Your Voice Matters:

The House Energy and Commerce Committee passed the bill out of committee unanimously on June 12th. The bill now goes to the House floor and then the Senate to become law. Contact your Senators and Representatives today and urge them to support the reauthorization and enhancement of the Autism CARES Act. Your advocacy can make a difference in the lives of millions.

Autism CARES 2024

 In The Politics of Autism, I discuss the congressional role in the issue.

From Autism Speaks:

Today, the U.S. House Energy and Commerce Committee’s Subcommittee on Health reviewed 23 bills, including the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2024 (H.R. 7213). We are grateful to Chair Guthrie, Ranking Member Eshoo, Chair McMorris Rodgers, and Ranking Member Pallone for convening this meeting and recognizing the urgent need to invest in autism research and training programs to ensure better care and well-being for autistic people. As a result of today’s markup, the Autism CARES Act of 2024 has been amended to include changes, many of which were suggested by Autism Speaks and colleague organizations, that not only sustain support for existing federal autism programs but also expand efforts and address challenges for currently underserved portions of the autism population.

As the most comprehensive federal law addressing the urgent needs of the autism community, the Autism CARES Act of 2024 includes over $2 billion in authorized federal spending on autism research and training programs for the next five years. Autism Speaks has led efforts, and worked in coalition with other organizations, to ensure that the federal programs that exist due to this law continue to expand and evolve to meet the diverse needs of the entire autism community. After countless meetings with our congressional champions, collaboration with other stakeholders and organizations, and meetings held by 100+ advocates during our Advocacy Forum & Hill Day, we are proud to celebrate this milestone in not only advancing the Autism CARES Act of 2024 but expanding its impact through new elements of the bill.

The Autism CARES Act has been the single most important driver of federal investment in autism research and training programs over the past two decades.

Through the research, training and data collection programs at the National Institutes of Health (NIH), Health Resource and Services Administration (HRSA) and Centers for Disease Control and Prevention (CDC), the Autism CARES Act has resulted in:A lower average diagnosis age and improvements in early intervention services;
Updated data on the prevalence of autism in children and adults across the spectrum and within different demographic and geographic communities;
The training of thousands of health professionals through Leadership Education in Neurodevelopmental and Other Related Disabilities (LEND) sites and Developmental Behavioral Pediatric Training Programs.
Advancements in understanding autism, including the co-occurring physical and mental health conditions that affect autistic individuals at much higher rates;
Actionable data on the significant disparities that autistic people experience in terms of access to quality health care, daily life supports and services, and employment opportunities; and
and development of personalized approaches and evidence-based best practices for serving autistic individuals.

Under the leadership of Autism Caucus Co-Chairs Congressmen Chris Smith and Henry Cuellar, the Autism CARES Act of 2024 was introduced earlier this year to renew the bill before portions of it expire at the end of September. Thanks to their collaboration and commitment to not just sustaining support for federal autism programs but building on progress, the bill now includes several new important elements, many of which were suggested by Autism Speaks and colleague organizations.
In addition to continuing existing federal autism programs, the Autism CARES Act of 2024 now also includes the following enhancements:

1. New language directs the NIH Director to ensure a more inclusive approach to autism research. This change will help to propel greater inclusion of individuals that have been underrepresented in autism research studies, in particular autistic people who require 24-hour care and may struggle with harmful or self-injurious behaviors.
2. The creation of a new Autism Intervention Research Network for Communication Needs will benefit autistic individuals who may be unable or limited in using speech or language to communicate. This would be the third Autism Intervention Research Network established under the Autism CARES Act. The two existing networks focus on physical health and behavioral health and help translate research into clinical practice and community-based resources that serve people with autism and their families.
3. The inclusion of gerontology (the study of the aging process) as a focus area of autism research activities will help propel future research on autism and aging. There are more than 5.4 million autistic adults in the U.S., about 2.2% of the population, yet people on the spectrum are rarely included in aging research and consequently have not benefited from advances in understanding and care of aging populations. Despite autism being a lifelong condition, there is a near-absence of research on ASD in older age and very little is known around how to best serve aging autistic adults. Advancements in this area will help ensure the aging autistic community benefits from research that drives improved quality of life across the lifespan.
4. The Government Accountability Office will be required to issue a study and report on how to increase the number of developmental behavioral pediatricians (DBP). By expanding the DBP workforce, children with a wide range of developmental and behavioral concerns, including autism, would have increased access to evaluation and services that address medical and psychosocial aspects of development. It also sets a higher standard for what quality medical care for children with autism looks like.
5. Approximately $279 million increase in spending on federal autism programs will result from an increase of annual funding authorization levels by $56 million more than the previous iteration of the Autism CARES Act. This results in a total investment of over $2.1 billion over the next 5 years.

The Autism CARES Act of 2024 builds on progress from previous iterations of the law and will help propel forward critical research and training programs that benefit people with autism and their families. We look forward to working with congressional champions to continue to fortify the impact of this legislation and pass it in a timely manner.

Autism CARES Reauthorization

 In The Politics of Autism, I discuss the congressional role in the issue.

Anne Roux at the Policy Impact Project of the AJ Drexel Autism Institute:

The federal Autism CARES Act, which has existed for the past 17 years, is due for renewal by September 30, 2024. This law authorizes funding and guidance for autism surveillance, training, and research programs. Before these programs began in the early 2000s, there was little to no policy that directly addressed autistic people’s needs. Thanks to the establishment of the CDC’s Autism Developmental Disabilities Monitoring (ADDM) program, research and policy activities have grown exponentially, as ADDM quantified the dramatic increase in autism prevalence – now 1 in 36 children.

Findings from scholarly activity, and the aging of the earlier cohorts of autistic youth, have generated new thoughts regarding the focus of Autism CARES Act investments. In recent months, leading autism advocacy organizations have issued statements and provided testimony with recommendations for updates to the Autism CARES Act.*

...

Some proposals also call for restructuring how recommendations for autism research funding are made and how autism policy is coordinated.

Our own services research at the Policy and Analytics Center receives funding through the Autism CARES Act. This funding is critical because services research, which focuses on services that are needed and used by autistic people, has always been allocated less than 10% of autism research funding. This means there is limited research funding focused on improving people’s functioning and quality of life. We have used this funding to advance understanding of the needs of autistic transition-age youth, the needs of autistic individuals who have been historically under-represented in research, and physical health issues common among autistic people. This funding also partly supports publication of the National Autism Indicators Reports which advise decisionmakers and advocates on how autistic individuals and their families are faring. As such, we are uniquely positioned to speak to how the Autism CARES Act could better address the needs of autistic transition-age youth and adults.

Our recommendations:

We concur with the need for increased services research and policy initiatives focusing on:

• autism care, particularly in the areas of adult diagnosis, which is often prohibitively expensive yet required for program eligibility; mental health; and delivery of physical health services in ways that are appropriate for the sensory and cognitive needs of autistic individuals
• the communication needs of non-speaking individuals
• daily life challenges of autistic adults, including accommodations for sensory needs
• an emerging crisis stemming from limited systems-level capacity to support autistic individuals as they age, particularly those who have aging care partners

We concur with the need for research to improve the system of care for autistic individuals who require round-the-clock support (both long-term and intermittent, depending on people’s needs); and we add the need for research to also improve the system of care for autistic individuals who do not meet eligibility requirement for care given absence of a discrete intellectual disability (but who often have severe and persistent mental illness that interferes with functioning).

We further recommend research and policy focusing on:

• Effective supports (e.g., financial, respite, training, emotional) for families who are the primary providers of care for autistic people who cannot live on their own, or who cannot find or fund accessible and safe living arrangements in a place of their own. These needs are exacerbated by long wait lists for Medicaid home- and community-based services, a significant shortage of direct support workers, and difficulty finding affordable housing and funding for rental assistance.
• Understanding of capacity and efficacy of public health insurance mechanisms which are the primary funding source for care of autistic individuals, including investigation of the large numbers of young autistic persons receiving dual Medicaid-Medicare benefits.
• Cross-system capacity to deliver services and supports in the areas of employment, housing, and planning for the transition into adulthood.

*We reviewed recommendations from the Autism Society of America, the Association of University Centers on Disability, Autism Speaks, and the Autism Science Foundation

.

Disability Policy in the Contemporary Congress

 In The Politics of Autism, I discuss the congressional role in the issue.

I have an article at The Forum: "Disability Policy in the Contemporary Congress." Abstract:

The politics of disability policy in the contemporary Congress confirms the observation by James Curry and Frances Lee that lawmaking largely remains a process of bipartisan accommodation. Most major disability legislation since the 1970s has passed with bipartisan sponsorship and support. One reason is that the issue affects so many Americans, including members of Congress. There have been some exceptions to this bipartisan pattern, particularly when disability policy intersects with more contentious issues. And bipartisanship does not guarantee outcomes that are satisfactory to people with disabilities.

From the article:

Despite bipartisan support on Capitol Hill, the [Combating Autism Act of 2006] did arouse some controversy within the autism community. Self-advocates said that it focused too little on services and gave practically no attention to the needs of autistic adults.[55] They considered autism part of their identity and took offense at the notion that it was an enemy that “kidnapped” children. The Autism Self-Advocacy Network (ASAN) criticized the law’s title as “hurtful and stigmatizing,” and it launched a hashtag campaign, #StopCombatingMe. The self-advocates’ efforts had an effect: the 2014 reauthorization addressed some of their substantive concerns and gave the law a different name: the Autism Collaboration, Accountability, Research, Education, and Support Act, or the Autism CARES Act. Congressional Republicans did not complain that the title change was “politically correct.” They supported the reauthorization, which passed by voice vote in the House and unanimous consent in the Senate.[56]

The story was similar with the next reauthorization. A press release put it this way: “U.S. Senators Mike Enzi, R-Wyo., and Bob Menendez, D-N.J., senior members of the Senate Finance Committee that sets national health policy, today applauded the unanimous, final passage of the Autism Coordination, Accountability, Research, Education and Support (CARES) Act of 2019 that, for the first time, considers the needs of individuals with autism spectrum disorder (ASD) well into adulthood and throughout their lifetime.”[57] Donald Trump tweeted out a photo showing his Sharpie signature on the bill, saying: “Today, I was proud to sign the Autism CARES Bill! We support research for Americans with Autism and their families. You are not forgotten, we are fighting for you!”[58] Just as he was acknowledging this achievement of the “shadow Congress,” the House was taking the first steps that would lead to his impeachment.

...

Despite notable exceptions, disability politics has mainly remained in the “shadow Congress,” where calm deliberation and bipartisanship are the norm. But “bipartisan” does not always mean “good.” Even when bills go through the normal legislative process without shouting and name-calling, the results may disappoint many stakeholders.

Such disappointment spans the range of programs affecting people with disabilities – especially IDEA. At least through 2023, as noted earlier, Congress has never approved “full funding” of the law: 40 percent of the average per pupil expenditure for special education. In many places, parents complain of inadequate support for their children. For decades, lawmakers have proposed legislation to meet the funding level that the 1975 bill had promised. One obvious problem is cost. In 2021, the National Education Association estimated that the funding gap stood at about $36 billion.[84] And even meeting that mark might not be enough. Recent research suggests that the distribution of federal special education funds has become more inequitable across states.[85] Accordingly, Congress would need to consider funding formulas, not just aggregate spending.

 

ASF Lobbyist Argues for "Profound Autism" Designation

 In The Politics of Autism, I write:

The most basic questions trigger angry arguments. For instance, into what category do we put autism in the first place? In 2013, President Obama said that “we’re still unable to cure diseases like Alzheimer's or autism or fully reverse the effects of a stroke.” The language of “disease” and “cure” offends some in the autism community. “We don’t view autism as a disease to be cured and we don’t think we need fixing,” says Ari Ne’eman of the Autistic Self-Advocacy Network. “We do feel comfortable with the word disability because we understand what it means.” From this perspective, autism is difference that requires accommodation, not an illness that requires eradication. Adherents of this position liken autism to homosexuality, which psychiatrists once deemed to be a  disorder. Conversely, some parents take offense at opposition to a cure. “Anyone with the mental and verbal ability to challenge autism research is not autistic on a scale that I care to recognize,” writes autism parent James Terminello. “Opposition to finding a cure is particularly hurtful to parents who still mourn the loss of the child that could have been. A line has been crossed.”

Craig Snyder, former chief of staff to Sen. Arlen Specter and lobbyist for the Children’s Health Act of 2000 and the Combating Autism Act of 2006, at The Hill: 

By 2014, the Combatting Autism Act couldn’t be reauthorized without changing its name to the Autism CARES Act, a piece of Orwellian language that marked a radical shift in the policy the law was intended to codify.

Kids who can’t speak, many with severe intellectual disability and serious physical health problems, and their families, are aggregated in popular culture with celebrities who sometimes self-diagnose as autistic —even as they suffer undiagnosed physical pain (for example, from GI disease) or seizures, often “treated” with completely inappropriate anti-psychotic medications and leather restraints, confronted by and harmed by police without training in their special needs, or as they wander into harm’s way or accidental deaths.

If someone had told me that in 2023 sufficient resources would not have been mustered to determine the basic biology of profound autism and to turn understanding of causation into medical treatments, and that those awaiting breakthroughs would have such a pathetic infrastructure of services, I simply would not have believed it. That is why I’ve rejoined this cause as lobbyist for the Autism Science Foundation.

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The Autism Act is again coming up for reauthorization, allowing accountability for taxpayer dollars and learning from experience about policies’ effectiveness.

The millions who love someone afflicted with profound autism will advocate for people who cannot speak for themselves, insisting that the Congress and President Biden make the crucial distinction between profound autism and the neurodiversity represented by ASD self-advocates, and, with respect to profound autism, recommit to combatting it and seeking its ultimate cure.

Coordination

In The Politics of Autism, I discuss the policy paradoxes of the issue.  I presented a paper titled "Autism and Accountability" at the 2020 Annual Meeting of the American Political Science Association.  

The abstract:

We expect policymakers to be accountable to the public for their handling of public issues. The case of autism presents fundamental difficulties. First, the boundaries of autism have shifted over the years, and they remain contested. Second, there are multiple publics with radically different views about the character of the issue. Third, there is no single “autism policy.” Instead, the issue spans multiple issue areas where responsibility is diffused and the connections between policy outputs and outcomes are difficult to establish. The paper ends with modest recommendations for improving our knowledge base.

Full text:  here: https://www.scribd.com/document/475658529/Autism-and-Accountability

From the 2023 IACC Draft Strategic Plan: 

Autism- and disability-related programs exist at numerous federal agencies to address a wide variety of issues ranging from health, research, disability services, justice, housing, employment, transportation, military needs, communication, and other diverse issues. Given the large size and distributed nature of federal activities, the U.S. Congress and federal agencies have also put in place several structures to coordinate federal activities around disabilities and, in some cases, autism specifically. These coordination structures foster interdepartmental and interagency communication and collaboration on issues that are essential to autism and disability-related federal activities.

The Interagency Autism Coordinating Committee (IACC) is a foundational part of the federal coordination structure for autism that was created under the Children’s Health Act of 2000 (Public Law106-310), reconstituted under the Combating Autism Act of 2006 (CAA; Public Law 109-416), and most recently reauthorized under the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2019 (Public Law 116-60). It is the only autism-specific interagency federal advisory committee in the federal government. The Autism CARES Act of 2019 outlines requirements for the membership of the IACC, which includes officials representing an array of federal departments and agencies and public members who represent a variety of perspectives within the autism community. Collectively the committee provides advice to the HHS Secretary concerning issues related to autism and coordinates federal autism efforts. 

In 2014, Congress added a new component to the federal coordination structure by requiring in the Autism CARES Act of 2014 the designation of a National Autism Coordinator (NAC), “an existing official within the Department of Health and Human Services to oversee, in consultation with the Secretaries of Defense and Education, national ASD research, services, and support activities.” The duties of the NAC include coordinating and implementing federal autism research, services, and support activities, taking into account the IACC Strategic Plan, as well as ensuring that federal ASD efforts are not unnecessarily duplicative. The NAC accomplishes cross-agency and cross-departmental coordination in part through the activity of the Federal Interagency Workgroup on Autism (FIWA), an all-federal working group of representatives from multiple federal departments and agencies, most of which are also represented on the IACC. The NAC has led the development of several comprehensive reports to Congress on federal autism activities and other projects requiring cross-agency collaboration.

A third layer of interagency and intra-agency coordination is composed of a series of federal advisory committees and coordinating committees that work on specific issues related to autism and disabilities. At the National Institutes of Health (NIH), the NIH Autism Coordinating Committee coordinates NIH intra-agency efforts on autism research. Other advisory committees and agencies across the federal government that contribute to federal coordination on issues of relevance to autism and disabilities include:

• 2021-2023 IACC Strategic Plan for Autism Research, Services, and Policy Draft January 2023 11

• Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act Council (family caregiver issues)

• President’s Committee for People with Intellectual Disabilities (intellectual disabilities), theInteragency Committee on Disability Research (disability research) 

• Federal Partners in Transition (youth with disabilities)

• National Council on Disability (a federal agency for disability policy)

• Interdepartmental Serious Mental Illness Coordinating Committee (mental illnesses that may cooccur with autism)

• Federal Communications Commission Disability Advisory Committee (communication technology for people with disabilities)

• National Advisory Committee on Individuals with Disabilities and Disasters (disaster preparedness and response)

• Advisory Committee on Accessible Air Transportation - ACCESS Advisory Committee (disabilities and air transportation).

 Each of these advisory committees focuses on specific topics related to disabilities, which are informative to the efforts of the IACC to coordinate autism activities.

Autism Family Caregivers Act

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.

A release from Senator Bob Menendez (D-NJ):

U.S. Senators Bob Menendez (D-N.J.) and Susan Collins (R-Maine) today introduced bipartisan, bicameral legislation that would provide autism families the support and training needed to provide quality caregiving to their children.

“Throughout my entire career, I have fought to ensure autistic individuals have the resources to live full and productive lives,” said Sen. Menendez. “I’m proud to lead this bipartisan bill that will deliver real results for children living with autism, their families, and caregivers. This is about dignity and compassion. And most of all, it’s about recognizing that we need to do more to help everyone reach their highest potential by providing the resources needed support that goal.”

“Millions of American families devote enormous time and attention to care for a loved one with autism and to ensure they have the same opportunities as their peers,” said Sen. Collins. “Our bipartisan legislation would support the efforts of these selfless caregivers to improve the wellbeing of children with autism. By providing families with the tools and resources they need to succeed, we can ensure that all children have the ability to reach their full potential and lead rich, fulfilling lives.”

New Jersey has the highest rate of autism, with one in 35 children identified with ASD. One in 44, 8-year-olds nationwide have ASD, according to the CDC.

The Autism Family Caregivers Act would establish a five-year caregiver skills pilot program to award grants to nonprofits, community health centers or hospitals to provide skills training to family caregivers of children with autism. The training will teach family caregivers how to use every day routines and home activities to improve the mental and physical well-being of such children and their caregivers. Caregivers will be trained to address communication skills, daily living skills, social engagement and behavior management. The grants will provide for 25 pilot programs in at least 15 states.

The National Association of Community Health Centers, New Jersey Hospital Association, American Academy of Pediatrics, Autism Society, The Arc and Autism Speaks support the senators’ legislation.

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Congresswoman Grace Meng (D-N.Y.-06) is the lead sponsor of the bill in the House.

Sen. Menendez is the leading champion in Congress for individuals living with autism and their families. The Senator’s Autism Collaboration, Accountability, Research, Education and Support (Autism CARES) Act of 2019 was passed and signed into law. The bipartisan bill, which builds upon the 2014 Menendez-authored law, shapes federal autism policy and investment in research, early detection, and research to develop new treatments and therapies for those with ASD and other developmental disabilities. The 2019 law also considers the needs of individuals with ASD well into adulthood and “across [their] lifetime.” The Senator was also one of the original authors of the Autism CARES Act of 2006.

The Next COVID Bill

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all.  Congress has attempted to respond.

A letter to congressional leaders from the Consortium for Citizens with Disabilities (CCD):

The undersigned members of the Consortium for Citizens with Disabilities (CCD) Task Force on Developmental Disabilities, Autism, and Family Support urge you to include the following programs in the next COVID-19 bill. The mission of the task force is to advocate for federal public policies that directly relate to individuals with developmental disabilities, autism spectrum disorders, family supports, and the prevention of child abuse and neglect. These programs were not included in previous COVID legislation and demand for the services they provide have increased dramatically in the last several weeks, leaving them unable to meet the needs of people with developmental disabilities and their family caregivers.

Among the programs:

We urge Congress to allocate emergency funding to the Administration for Community Living to fund a National Autism and Other Developmental Disabilities Resource Network and Navigator Program. This resource network would help ensure access to specially trained navigators who can provide person-centered case management across the lifespan and referrals to local providers, and resources and information during this time and throughout the recovery. This program is needed to fill the gap in existing programs – namely, the Family-to-Family program (described below) which assists families of children with special health care needs with health care related issues, and the Parent Training and Information Centers under the Individuals with Disabilities Education Act (IDEA), which serves families of children and young adults needing assistance with issues related to early intervention, pre-school, elementary, and secondary education. A new navigator program would help meet the range of needs of adults with developmental disabilities who are not served by these other family support programs.

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LEADERSHIP EDUCATION IN NEURODEVELOPMENTAL AND RELATED DISABILITIES (LEND) As affirmed by the Congressional Autism Caucus on March 21, 2020, the rapid shift to telehealth for assessment and treatment has a disproportionate impact on people with disabilities and their families. Critical support is needed to continue access to evaluation and treatment. The 52 programs funded under Autism CARES Act (P.L. 116-60) provide an existing infrastructure that is pivoting to meet this need and has capacity, with emergency funds, to provide access to assessment and treatment for people with neurodevelopmental disabilities and their families. We request $20 million to HRSA’s Autism and other Developmental Disabilities program for the LENDS.

Signers include  the Autism Society of America and the Autistic Self Advocacy Network.

Trump 2021 Budget v. Autistic People

In The Politics of Autism, I discuss the issue's role in campaign politics.   In the 2016 campaign, a number of posts discussed Trump's bad record on disability issues more generally.   As his actions as president indicate, he has little use for Americans with disabilities.

From the Autism Society:

The Autism Society of America is very disappointed that the President’s budget request for Fiscal Year 2021 released yesterday is overall unsupportive of our most vulnerable populations, including the almost 3 million individuals with autism and their families (read detailed summary here).

“Supporting those with autism is a human rights issue,” stated Christopher Banks, President and CEO of the Autism Society of America. “This budget requires tremendous sacrifices from those with the least able to make those sacrifice. The President’s budget dramatically reduces the funding for vital programs and services that assist those with autism. This budget will negatively impacting their quality of life and reduce opportunities to fully participate in our communities.”

As in the previous three budgets, this year’s request proposes steep reductions in social-safety-net programs, including cuts to Medicare, Medicaid, and Social Security. The Administration proposes $1 trillion in cuts to Medicaid and the Affordable Care Act over ten years. Over ten years, Social Security is cut by $30 billion and Supplemental Nutrition (SNAP) programs are reduced by $180 billion.

According to the Budget Summary for the Department of HHS, the Administration, once again, completely eliminates Autism CARES Act funding for much needed interdisciplinary training of health professionals and the development of evidence-based services and support. The Autism and Other DD line item funds the interdisciplinary professional health programs (including Leadership Education and Neurodevelopmental Disabilities (LEND) and Developmental Behavioral Pediatrician (DBP) programs) intended to increase the number of health professionals to screen, diagnose, and treat individuals with autism. It also funds development of evidence-based interventions.

These activities were increased as part of the original Autism CARES Act (just reauthorized in 2019) to help address the growing numbers diagnosed with autism. Congress rejected these cuts in the previous three years.

Without any justification, the budget also eliminates a small but vital Supported Employment State Grants for people with developmental disabilities.

While the Budget for the Department of Education provides a small increase for special education programs, this amount has not kept up with the number of children found to be eligible, pushing more of the responsibility onto the states. The Autism Society supports full funding for the Individuals with Disabilities Education Act (IDEA).

The President’s budget also cuts funding for the Centers for Disease Control and Prevention by nine percent overall, which includes a $50 million cut to the National Center on Birth Defects and Developmental Disabilities (NCBDDD), a third of its budget. This center provides important surveillance activities as well as research and public education into complex neurodevelopmental disabilities such as autism.

“We know there are many in Congress who understand the challenges people with autism and their families face,” Banks continued. “Individuals living with autism have proven time and time again, when given the opportunity, they can improve their quality of life, be loyal and dedicated members of the workforce, and active members in their communities. ”

“We need members of Congress to stand up and fight for their constituents. We are encouraging individuals and families to communicate with all of their elected officials about how this budget affects people with autism,” said Banks.

The Autism Society of America is the nation’s oldest and largest grassroots organization representing individuals and families impacted by autism. For more information, contact Kim Musheno at 301-657-0881, ext. 9020.

Read our further analysis here.