In this issue of Capitol Connection, we highlight key updates on federal and state policies affecting the Autism and disability communities, including advocacy opportunities, research developments, and government actions. We encourage you to stay engaged and visit the Autism Society of America’s Action Center to connect with your legislators on these critical issues. The Action Center includes multiple action alerts on important and timely state legislation. 

FDA and Leucovorin 

The Food and Drug Administration (FDA) has approved the use of Leucovorin for children and adults with a rare genetic condition, Cerebral Folate Deficiency (CFD) with a confirmed FOLR1 gene variant, that limits the delivery of folate, a form of vitamin B, to the brain. FDA officials estimate that this ultra-rare condition affects fewer than one in a million people in the United States. 

The announcement clarifies earlier comments from a White House news conference in September, when former President Trump and FDA Commissioner Marty Makary suggested the drug was under review for potential benefits for patients with Autism, some of whom may have a related form of folate deficiency. According to the FDA, there is currently little evidence that Leucovorin provides benefit for people with Autism. 

Read more on PBS NewsHour.  

Interagency Autism Coordinating Committee 

The Department of Health and Human Services has announced that the first meeting of the new Interagency Autism Coordinating Committee (IACC), originally scheduled for March 19, has been postponed. No reason for the delay has been provided. The Autism Society remains prepared to engage with the committee and continue its work to advance Autism research, services, and policy. 

Autism Society Joins New Independent-Autism Coordinating Committee 

The Autism Society is proud to be a member of the newly formed Independent-Autism Coordinating Committee, launched by the Autism Science Foundation. The committee aims to guide private research funding to address the most pressing needs of the Autism community. 

The first meeting is scheduled for March 19, from 10:00 a.m. to 5:00 p.m. ET, and will be held via Zoom. See more here.  

CMS Launches CRUSH Initiative to Address Healthcare Fraud  

The Administration recently announced a new effort to strengthen oversight and address fraud in Medicare and Medicaid. As part of this effort, the Centers for Medicare & Medicaid Services (CMS) introduced the Comprehensive Regulations to Uncover Suspicious Healthcare (CRUSH) initiative. 

CMS has released a request for information (RFI) seeking input from a wide range of stakeholders on how to better detect and prevent fraud. Given that past CMS enforcement actions have included services such as Applied Behavior Analysis (ABA) and Home and Community-Based Services (HCBS), this initiative has important implications for the autism community. 

The Autism Society encourages stakeholders to respond to the RFI and highlight the critical importance of these services, as well as the need to preserve access. There is concern that increased focus on fraud could unintentionally restrict services that are already difficult for many individuals and families to obtain. 

• CRUSH RFI 

• Learn more about initiative.  

GAO Report on Disability Employment 

The Government Accountability Office (GAO) released a new report  outlining how the federal government can strengthen employment outcomes for people with disabilities. The report finds that between 2021 and 2024, more than 500,000 individuals with disabilities were unemployed and actively seeking work each year, highlighting persistent gaps in access and opportunity. 

GAO identified several key areas where the Department of Labor (DOL) can take action to improve outcomes. First, the agency should enhance its data collection by tracking employment information by disability type, allowing for more targeted and effective interventions. Second, GAO recommends that the Secretary of Labor establish a formal, written process to routinely analyze state and local workforce monitoring reports. This would help identify widespread accessibility challenges and ensure timely action to address them. Finally, the report calls on DOL to evaluate how well state and local workforce agencies are using existing guidance and technical assistance, including its promising practices for accessibility, and to strengthen efforts to promote and disseminate these resources where needed. 

These steps would help create a more accessible and equitable workforce system for people with disabilities. 

Justice In Aging Webinar on State Medicaid Cuts 

Justice In Aging recently hosted a webinar for advocates on how to respond as states adjust their budgets following federal Medicaid cuts. The session focused on the impact of H.R. 1 funding reductions on programs that older adults and people with disabilities depend on for basic needs. It also provided practical strategies for advocates to engage with state policymakers and work to protect these essential programs. 

• Slides 

• Recording 

Virginia Autism Advocacy Day 

The Virginia Autism Coalition, including the Autism Society of Central Virginia, Northern Virginia, and Tidewater, held its annual advocacy day at the state capitol. More than 120 advocates filled the halls of the Virginia General Assembly and met with over 90 legislative offices to raise awareness and push for action on key issues, including Medicaid, early intervention, employment, and other priorities affecting the Autism community. 

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“We are honored to welcome Scott Badesch and Robert Rusbuldt to the Autism Society of America’s Board of Directors,” said Joe Joyce, President and CEO of the Autism Society of America. “Scott and Bob bring a wealth of knowledge and experience that will directly benefit the Autism Society’s mission. Their guidance will ensure that we continue to provide meaningful support and services to Autistic people and their families nationwide.” 

Meet the New Board Members

Scott Badesch 

Scott is a senior executive with 50 years of experience providing guidance and leadership across the private sector, government, and nonprofit organizations, including his role as former President and CEO of the Autism Society of America. He has extensive experience in business and program development, fundraising, marketing, social media strategy, and navigating the Autism space for private businesses and investors, including equity firms and ABA practices. 

Scott has deep knowledge of Autism policies, programs, treatment models, legislation, funding, and research. Recognized by Congressman Chris Smith and Congressman Mike Doyle for his leadership within the Autism community, he has helped advance Autism-related initiatives at the federal level. 

Since January 2020, Scott has served as President and CEO of Badesch and Associates LLC, consulting for clients globally, and in the U.S., including NGOs, technology startups, educational institutions, and private sector Autism services. From May 2024 through February 2025, he  served as Senior Policy Advisor to Congressman Chris Smith, focusing on Autism, caregiver support, brain health, and the reauthorization of the Autism CARES Act. 

Robert A. Rusbuldt 

Bob is a nationally recognized leader in the insurance and financial services industry, with over 40 years of experience in association leadership, public policy, advocacy, and executive management. He currently serves as President of Rusbuldt & Associates, LLC, a consulting firm advising organizations on strategy, governance, advocacy, and industry engagement.  

From 2001 to 2023, Bob was President and CEO of the Independent Insurance Agents & Brokers of America (the Big “I”), becoming the longest-serving CEO in the organization’s history. He oversaw more than 300,000 members across 51 state associations and led initiatives in technology, digital marketing, education, advocacy, and professional development.  

Earlier, he held senior executive roles including Legislative Director at the American Insurance Association, the U.S. Labor Department, and for Congressman Carroll Campbell, with responsibility for the House Ways & Means Committee.  He has served on numerous corporate and nonprofit boards, including WR Berkley Corporation and the United States Capitol Historical Society, and has been recognized as one of the insurance industry’s Top 25 Living Legends. Bob holds a B.A., summa cum laude, from The King’s College and an M.A. from American University. 

For more information about the Autism Society of America and its Board of Directors, visit https://autismsociety.org/our-team.

About the Autism Society of America: 

The Autism Society’s mission is to create connections, empowering everyone in the Autism community with the resources needed to live fully. As the nation’s oldest leading grassroots Autism organization, the Autism Society and its approximately 70+ local affiliates serve over half a million members of the Autism community each year. It envisions a world where everyone in the Autism community is connected to the support they need, when they need it – including education, advocacy efforts, and supports and services throughout the lifespan. For more information, visit the Autism Society at AutismSociety.org, Facebook, Instagram, or Twitter.

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In this issue of Capitol Connection, you will find updates on federal funding and appropriations, key congressional and agency actions affecting the Autism community, and important state advocacy efforts across the country. We encourage you to stay engaged and visit the Autism Society of America’s Action Center to connect with your Legislators on these critical issues. 

Disability Policy Seminar 

Advocates have less than a month left to register for the Disability Policy Seminar, taking place March 23–24 in Washington, D.C. This annual event brings together self-advocates, families, professionals, and partners from across the country to learn about the key federal issues affecting the intellectual and developmental disability community. Participants will gain insights on current policy priorities and advocacy strategies, then apply what they learn during meetings with their Members of Congress on Capitol Hill. The seminar offers a unique opportunity to elevate the voices and experiences of the disability community directly with federal policymakers. Register today!  

Fiscal Year 2026 Funding and Beyond 

Congress has passed nearly all Fiscal Year 2026 funding bills, except for the Department of Homeland Security, which remains shut down. Despite this, the Labor, Health and Human Services, and Education funding bill delivered important gains for the Autism community. 

The approved funding package provides nearly $400 million for Autism CARES Act–related research and programs. This includes increased support for Autism initiatives managed through the Health Resources and Services Administration. Lawmakers also restored $8 million at the Department of Defense for Autism research, highlighting the federal commitment to advancing scientific understanding and services. Additionally, Congress directed the National Institutes of Health (NIH) to fully implement new components of the Autism CARES Act of 2024 and to continue investing in Autism research. These measures aim to sustain progress in research, coordination, and program development under the updated law. 

In education, Congress maintained funding for the Individuals with Disabilities Education Act (IDEA) and other special education programs at the Department of Education. The bill also emphasizes that the Department must maintain adequate staffing to carry out its responsibilities, and that core program functions cannot be shifted without congressional approval. 

Beyond funding, two key Autism and disability policy measures were included in the bills: 

• The Ensuring Access to Medicaid Buy-In and Programs Act, which expands Medicaid coverage options for working people with disabilities. 

• The Lifespan Respite Care Act, which continues support for respite services that help families and caregivers provide long-term care. 

The Autism Society is now turning its attention to Fiscal Year 2027 appropriations. The Administration is expected to release its budget requests to Congress after the President’s State of the Union on February 24.  

Senate Hearing on Modernizing the National Institutes of Health 

The Senate Committee on Health, Education, Labor, and Pensions held an hearing on February 3rd with Dr. Jay Bhattacharya attending as a key witness. As the current Director of the National Institute of Health, Dr. Bhattacharya heard questions regarding the NIH’s efforts to improve health, as well as recent controversies surrounding vaccines, grant disruptions, and the current administration. The Autism Society of America submitted questions for the record, and many Senators chose to ask questions regarding Autism. Both Senator Sanders and Senator Hassan asked Dr. Bhattacharya to address the claim that vaccines cause Autism, and to both he responded that there is no evidence that supports that claim. In addition, he affirmed that under his leadership, the NIH is doing more than ever before to research the causes of Autism. 

Government Accountability Office Report on Department of Ed 

The Government Accountability Office (GAO), the independent and nonpartisan research arm of Congress, has released a report examining disruptions to the U.S. Department of Education’s Office for Civil Rights (OCR), the office responsible for enforcing federal nondiscrimination protections for students, including students with disabilities. 

Commissioned by Senator Bernie Sanders (I-VT), the Ranking Member of the Senate Health, Education, Labor and Pensions Committee, the report found that 2025 workforce reductions and administrative actions left many OCR investigators on paid administrative leave for months while unable to perform their duties, costing taxpayers up to $38 million. During this period, more than 9,000 discrimination complaints were filed with OCR, and roughly 90 percent were dismissed without review. 

The report also found that although some staff were later reinstated, OCR continues to operate with significantly fewer investigators than in 2024, despite record complaint levels. The findings raise ongoing concerns about federal capacity to investigate and resolve student civil rights complaints. The full GAO report is available here. 

CMS Audit on ABA Therapies  

The Centers for Medicare & Medicaid Services (CMS) has announced a multi-state audit examining Medicaid billing for Applied Behavior Analysis (ABA) therapy and related services provided to Autistic individuals. The review follows concerns from federal and state agencies about questionable billing patterns among some providers and payments for services that may not have been allowable under program rules. 

CMS is auditing Medicaid claims for ABA services delivered to children diagnosed with Autism to determine whether state Medicaid agency payments complied with federal and state requirements. The audit covers seven states, with reviews in Maine, Wisconsin, and Indiana already completed. In those three states, CMS reported that Medicaid fee-for-service payments tied to ABA and other rehabilitative and community services included millions of dollars in improper payments. The findings are expected to inform state corrective actions and potential policy or oversight changes. The Autism Society of America will continue to monitor the audit process and state responses as additional findings are released. More information is available here. 

State Updates 

Texas v Kennedy  

Texas and eight other states, Alaska, Florida, Indiana, Kansas, Louisiana, Missouri, Montana, and South Dakota, have filed a new legal challenge to Section 504 of the Rehabilitation Act and its integration mandate, a key disability rights protection that supports people with disabilities living in their communities rather than institutions. 

This protection, affirmed by the U.S. Supreme Court in Olmstead v. L.C. (1999), requires services to be provided in the most integrated setting appropriate and recognizes that unnecessary institutionalization violates disability rights law. The states are asking a federal court to strike down the current Section 504 rule, block its enforcement, and allow policies that could place people with disabilities at serious risk of institutionalization. 

Advocates warn that if the states succeed, it will become harder for people with disabilities and their families to secure community-based services, potentially leading to more people being forced into institutional settings. The case continues earlier litigation known as Texas v. Becerra, now Texas v. Kennedy, and could significantly weaken federal disability protections.  

If you live in one of the nine states in the lawsuit, please use our Action Alert to message your Governors and Attorney Generals to explain the importance of Section 504 and ask them to drop the lawsuit.  

Iowa  

The Autism Society of Iowa held their annual Advocacy Day at the Capitol in Des Moines. Over 200 advocates joined the affiliate to meet with their state legislators and make their voices heard.  

Maryland 

The Autism Society of Maryland participated in the Maryland Developmental Disability Advocacy Day. Over a thousand advocates joined to meet with their state legislators to discuss the importance of protecting DD services, education, and housing opportunities.  

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A Year of Expansion and Impact

Under the leadership of Executive Director Michele Iallonardi and Board President Alison Tawil, the Nassau/Suffolk Affiliate experienced a landmark year. In less than 12 months, the Affiliate increased its family membership by 25%, welcoming over 1,500 new members, and held the widely attended 2nd Annual Linking Long Island event with the Long Island Nets. Additionally, the team hosted over 200 programs free of charge and successfully delivered the Safety on the Spectrum™ First Responder training program to local agencies.

“2025 was a year of tremendous growth for our Affiliate,” said Michele Iallonardi, Executive Director. “We are extremely proud of our ability to create innovative ways to meet the needs of our community while ensuring our programs remain accessible to everyone.”

Strategic Growth and Sustainability

Veronica Garcia, Director of Development, highlighted key fundraising initiatives that fueled this success, including the 2025 Autism Acceptance Month campaign. These efforts provided the vital funding necessary to expand programming and increase staffing. This local impact was further solidified by a formal proclamation from Suffolk County recognizing the Affiliate’s contributions.

Looking Ahead

The Autism Society Nassau/Suffolk invites the community to join them for their next major milestone: the First Annual Long Island Autism Walk on May 3, 2026, at Sunken Meadow Park.

For more information on programs and upcoming events in Nassau/Suffolk, please visit nsasa.org/events/. See below for a video of the team in action!

About the Autism Society of America

The Autism Society of America is the country’s oldest and largest grassroots Autism organization. It seeks to improve the lives of all affected by Autism through advocacy, education, information and referral, support, and community at national, state, and local levels.

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February 5, 2026 (Rockville, MD) – The Autism Society of America is pleased to announce that the Autism Society Greater Wisconsin and the Autism Society South Central Wisconsin have joined forces to form a single statewide organization: Autism Society Wisconsin.

By coming together, Autism Society Wisconsin is creating a stronger, more connected statewide community of belonging, one where every voice matters, every person is supported, and local connections remain at the heart of the mission. This partnership allows the affiliates to strengthen their impact by sharing resources and programs, expanding support networks, and amplifying advocacy for Autistic individuals and their families throughout the state.

“Both organizations came together in a collaborative way, focused on their shared mission, vision, and values for the benefit of the Autism community in Wisconsin,” stated Pete Schwarz, Vice President of Affiliate Relations for the Autism Society of America.

The new statewide organizational structure includes a home office in Madison that coordinates programs, advocacy, and outreach. This is supported by existing chapters in Appleton (Fox Valley), La Crosse (Northern Driftless), Green Bay (Northeast), Wausau (Central), and Sheboygan/Manitowoc (Lakeshore), alongside a new chapter in Madison (the former South Central Wisconsin affiliate).

This unified approach streamlines the organization’s ability to grow and expand services into underserved areas. By operating as one entity, Autism Society Wisconsin can more efficiently provide social groups, support networks, and meaningful connections to more communities across the state.

For more information about the consolidation and Autism Society Wisconsin, please visit their new website at https://autismsocietywi.org/. You can also reach the affiliate by phone at (608) 630-9147 or via email at [email protected].

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January, 30, 2026, Rockville, M.D.– On January 28, the U.S. Department of Health and Human Services (HHS) announced a reconstitution of the Interagency Autism Coordinating Committee (IACC), appointing 21 new members.

The Autism Society of America worked diligently alongside national Autism organizations to support the reauthorization of the Autism CARES Act in 2024, which reestablished the IACC. The IACC has long played an important role in identifying and addressing the diverse and complex needs of the Autism community. We appreciate that the statute is being followed by including Autistic individuals, particularly nonspeaking Autistic people, as well as parents, on the committee. At the same time, we are concerned that the current composition does not include several long-established national Autism organizations that have historically contributed to the committee’s work.

This reconstituted IACC differs from prior committees and reflects a new approach to membership. While a variety of perspectives is represented, there are opportunities to further broaden the range of voices and experiences to more fully reflect the autism community and the perspectives that have traditionally informed IACC discussions. Previous IACCs benefited from a broad mix of lived experience, organizational leadership, academic institutions, and professional backgrounds, which supported thoughtful, informed dialogue on priorities and challenges across the autism community.

Transparency and public engagement have historically been central to the IACC’s work. We are concerned by reports that an orientation was held for new committee members prior to any formal public announcement, without advance notice on the committee’s website or in the Federal Register, as well as reports that some individuals publicly stated they had been selected before the nomination period closed. Joseph Joyce, President and CEO of the Autism Society, noted that these circumstances raise questions about process and transparency, and emphasized the importance of ensuring that future IACC meetings and actions are conducted publicly, with meaningful opportunities for community engagement.

The Autism Society remains committed to working collaboratively with HHS and the IACC to support an advisory body that is balanced, transparent, and inclusive, and that meaningfully represents the full Autism community across the lifespan.

About the Autism Society of America
The Autism Society of America is the nation’s oldest and largest grassroots Autism organization, dedicated to creating connections and empowering everyone in the Autism community with the resources needed to live fully.

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In this issue of Capitol Connection, we provide updates on the status of federal funding for Fiscal Year 2026, including ongoing efforts to prevent another government shutdown. You’ll also find the latest developments at the Department of Education, emerging Medicaid community engagement requirements, and new resources to support family caregivers and disability advocates as key policies move from Congress to state-level implementation. As these decisions carry significant implications for people with disabilities and their families, we encourage you to stay engaged and visit the Autism Society of America’s Action Center to connect with your Members of Congress on these critical issues. 

Disability Policy Seminar 

Registration is now open for the Disability Policy Seminar, taking place March 23–24 in Washington, DC. The Autism Society is proud to partner on this important event alongside The Arc of the United States, the American Association on Intellectual and Developmental Disabilities, the Association of University Centers on Disabilities, Caring Across Generations, Disability Belongs, the National Alliance for Direct Support Professionals, the National Down Syndrome Congress, United Cerebral Palsy, Self Advocates Becoming Empowered, and TASH. 

This year’s seminar features a streamlined format: one day of in-depth policy training followed by a dedicated day on Capitol Hill, where participants will advocate directly with their Members of Congress on critical disability policy priorities. 

Learn more and register at https://disabilitypolicyseminar.org/. 

Fiscal Year 2026 Appropriations 

Congress must still pass several appropriations bills before the January 30 deadline to fully fund the federal government for Fiscal Year (FY) 2026. To end the government shutdown in November, Congress enacted a continuing resolution (CR) that included three full-year appropriations bills covering Agriculture, the Legislative Branch, and Military Construction and Veterans Affairs programs. That legislation also extended funding for the rest of the federal government through January 30.

During the holiday recess, congressional leadership reached an agreement on top-line funding levels for the remaining nine appropriations bills and announced plans to move them in smaller legislative packages, known as minibuses.

The House and Senate recently passed one minibus, containing the Commerce–Justice–Science, Energy and Water Development, and Interior–Environment appropriations bills. The House just also passed the a minibus with the Financial Services and General Government and National Security, Department of State, and Related Programs Appropriations appropriations bills included. That package is now pending in the Senate.

The Defense, Transportation, Housing and Urban Development, and Homeland Security appropriations bills have yet to see any movement. In addition, the Labor, Health and Human Services, Education bill is held up by disagreements on language regarding protecting action against the Interagency Agreements.

Congress must advance these remaining bills, either individually, through additional minibuses, or through a long-term CR, before the January 30 deadline to avoid another lapse in government funding.

Department of Education 

Meeting with Secretary McMahon  

The Autism Society was proud to meet with Secretary of Education Linda McMahon alongside partners from The Arc, the National Center for Learning Disabilities, the Center for Learner Equity, the Council of Parent Attorneys and Advocates, the Council on Exceptional Children, and the National Down Syndrome Congress. 

During the meeting, we raised targeted questions regarding the Office of Special Education Programs (OSEP), the Rehabilitation Services Administration (RSA), and the Office for Civil Rights (OCR). While many details remain unresolved, the discussion provided an important opportunity to underscore the essential role these offices play in safeguarding students’ civil rights and ensuring access to services, guidance, and, critically, meaningful oversight. 

We look forward to continued engagement with the Secretary and her team and have followed up with a letter outlining our concerns and priorities, which can be found here:
https://c-c-d.org/fichiers/SecretaryMcMahon_FollowupLetter_1.9.2026.pdf 

Department of Health and Human Services 

Medicaid Community Engagement Requirements  

Following the enactment of H.R. 1 in 2025, states will be required to implement so-called community engagement or work requirements for their Medicaid expansion populations by December 2026. States may request waivers to begin implementing these requirements earlier, and Arkansas has become the first state to seek such a waiver.

The Arc of the United States has released a new advocacy toolkit designed to help ensure that people with disabilities do not lose access to Medicaid because of new work reporting requirements included in the reconciliation law. The toolkit provides guidance on navigating exemptions, documentation, and advocacy strategies at the state level. 

While the Department of Health and Human Services (HHS) is expected to issue a final rule by June to guide states on implementation, early engagement is critical. Advocates are encouraged to begin working with state officials now to shape exemption and exception processes and to put safeguards in place that protect people with disabilities from losing coverage or falling through administrative cracks.  

Report on Protecting Family Caregivers 

AARP has released an new report examining how states can ensure continuity of Medicaid coverage for family caregivers as community engagement requirements are implemented under H.R. 1. The paper highlights Medicaid’s critical role in supporting approximately 7.3 million family caregivers ages 18–64, enabling them to maintain their own health while providing care in home and community settings. Although H.R. 1 exempts family caregivers from community engagement requirements, the report underscores that state implementation choices will determine whether caregivers receive those protections. AARP outlines options available to states under the law, including thoughtful timelines, verification and reporting processes, and proactive outreach. The report also identifies existing data sources states can use to verify caregiver status and apply exemptions without unnecessary administrative burden. These recommendations aim to prevent coverage losses that could harm caregivers and weaken the broader long-term care system. This report serves as a crucial advocacy resource for engaging state leaders, offering concrete policy solutions advocates can use to help ensure family caregivers are protected as states move forward with implementation.  

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The Daniel Jordan Fiddle Foundation Leader in Adult Autism Award aims to inspire society to value the individuality of Autistic adults and foster awareness about outstanding strides being made by impactful leaders who have illustrated through their contributions the strengths and talents of Autistic adults. “Felicity House is worthy of our annual honor because of its commitment to providing a community space in New York City,” stated Linda J. Walder, Founder and CEO of The Daniel Jordan Fiddle Foundation.

“Felicity House is a remarkable organization providing an essential service to its local community. Their focus on empowering adult Autistic women through a safe and welcoming community space directly aligns with the Autism Society of America’s mission to ensure everyone has access to the support they need. We applaud their dedication and transformative work,” shared Joe Joyce, President and CEO of the Autism Society of America.

Located in the heart of Manhattan’s Flatiron District, Felicity House is a first-of-its-kind, non-clinical community space specifically designed for adult women with Autism. Founded in 2015, the organization provides a sophisticated and sensory-friendly environment where members can socialize, pursue personal interests, and connect with a supportive peer group.

When learning about the award, Felicity House expressed, “Felicity House is honored to accept The Daniel Jordan Fiddle Foundation Leader in Adult Autism Award for 2025. Since 2015, Felicity House has been dedicated to creating social opportunities for women with a diagnosis of Autism who live in the NYC area. Felicity House believes intentional spaces and a range of accessible social opportunities are essential for building meaningful connections and ensuring that Autistic women are seen, heard, and valued. We thank The Daniel Jordan Fiddle Foundation and the entire team at the Autism Society of America for recognizing Felicity House’s work.”

The Daniel Jordan Fiddle Foundation The Daniel Jordan Fiddle Foundation was the first not-for-profit and only all-volunteer-run organization in the United States to focus on adult Autism and has been blazing trails since 2002. They create paths leading to fulfilling and potential driven lives. Their model programs, resources, public policy, and awareness initiatives are person-centered and derive from the needs and hopes of the diverse population of adults diagnosed with Autism and their families. The Daniel Jordan Fiddle Foundation’s visionary leadership led to the creation of the first and only adult Autism focused endowment funds located at Yale University, Brown University, University of Miami, Rutgers University, Arizona State University and The Medical University of South Carolina College of Health Professions assures a global focus on cutting-edge program development, research, family support, vital resources and public policy for decades to come. The Daniel Jordan Fiddle Foundation Leader in Adult Autism Award is presented annually by the Autism Society of America to recognize and inspire the world by honoring exemplary individuals and endeavors that highlight the strengths and potential of all individuals with Autism to live their best lives. For more information visit: djfiddlefoundation.org

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Meet the New Board Members

Jennie Jacoby

Jennie Jacoby is an attorney and advocate at Invariant, a top bipartisan government relations firm in Washington, D.C. She has deep experience in health equity, financial services, and college athletics issues. Her current clients include top Fortune 500 companies and mission-oriented organizations seeking reform at the federal level. She has an Autistic young son named, Mack, and is very passionate about helping the community, especially the next generation of autistic children and young families. Jennie attended multiple Autism Society events and brought in contacts for the Autism Justice Center. She was also proud to join the Qatar Gala in April. As she states, “the advancements, regressions, tested faith, and ongoing advocacy for Mack have led me to this moment. I view the work the organization is doing as a personal, legal, and government relations imperative.”

Kristen Friel Spitzer

Kristen Friel Spitzer is a senior associate in the corporate finance group at Skadden Arps in NYC. She has focused her pro bono legal practice on non-profit organizations that serve individuals with intellectual and developmental disabilities and has been volunteering with organizations in the I/DD space for years. As she states, “as I look towards next steps in my career, I am looking to pair my legal experience, which spans corporate finance and private credit, mergers and acquisitions, and non-profit corporate governance and liability management, with my passion for disability advocacy/inclusion, education and programming.” She has two family members on the spectrum.

Andy Stettner

Andrew Stettner is the Senior Director of Economic Security at the National Employment Project. His career as a civic leader spans 25 years of experience modernizing workforce programs through research, policy advocacy, technology, and program administration, including serving as Director of Unemployment Insurance Modernization at the U.S. Department of Labor. He knows the Autism Society of America particularly well; he is the President of the Board of Directors of the Autism Society of Maryland. He has pushed hard for special education advocacy, including through the COVID-19 pandemic, and has testified regularly before the Maryland Legislature and Howard County Board of Education on disability issues. He is the parent of a daughter on the spectrum.

For more information about the Autism Society of America and its Board of Directors, visit https://autismsociety.org/our-team.

About the Autism Society of America: 

The Autism Society’s mission is to create connections, empowering everyone in the Autism community with the resources needed to live fully. As the nation’s oldest leading grassroots Autism organization, the Autism Society and its approximately 70+ local affiliates serve over half a million members of the Autism community each year. It envisions a world where everyone in the Autism community is connected to the support they need, when they need it – including education, advocacy efforts, and supports and services throughout the lifespan. For more information, visit the Autism Society at AutismSociety.org, Facebook, Instagram, or Twitter.

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November 24, 2025, Rockville, MD––As national organizations dedicated to advancing the well-being of autistic individuals and partners across the disability and public health sectors, we are deeply disappointed by the latest update to the Centers for Disease Control and Prevention’s (CDC) website on autism and vaccines. 

The website now states: “‘vaccines do not cause autism’ is not an evidence-based claim.” This is false. Nearly three decades of scientific research, consisting of dozens of high-quality studies conducted around the world, surveying millions of people, has repeatedly confirmed there is no causal link between vaccines and autism. The limited studies that have suggested otherwise have not been reproducible and are consistently found to contain methodological flaws and, in some cases, have outright falsified evidence.

CDC has been the primary source of reliable public health and medical information in the country, if not the world. Last week’s actions will likely confuse the public, and especially parents, who seek to protect their children from infectious diseases and chronic conditions that those diseases may cause.

The choice to invest further resources in search of a link between autism and vaccines detracts from the current wishes and needs of the autism community. There are dozens of potential research topics that could inspire hundreds of projects focused on community needs, personalized health care, and services that could benefit from funding. 

In April, many of the same organizations signed on to this letter stood united in our call for science-based decision-making and increased investment in the research, programs, and services the autism community needs to live fully. This includes the belief that public health messaging must be grounded in science and protect all communities. We recommit ourselves to this belief today.

In line with our shared principles of science-backed communications and decision-making, we call on the CDC to revert the website to its previous version, commit to vaccine education initiatives around the country that emphasize the high-quality, scientific evidence that vaccines do not cause autism, and invest in research projects and initiatives that are responsive to the needs of autistic people and their families. 

We urge public leaders, institutions, and media to uphold scientific integrity and work together to strengthen the infrastructure of support for the entire autism community.

Signed By:

Access Ready Inc.

Allies for Independence

American Association on Health and Disability

Association of University Centers on Disabilities

Autism Science Foundation

Autism Society of America

Autism Speaks

Autistic Doctors International

Autistic People of Color Fund

Autistic Self Advocacy Network

Autistic Women’s Alliance

Autistic Women & Nonbinary Network 

Dan Marino Foundation

Disability Rights Education and Defense Fund (DREDF)

Family Voices National

Felicity House

Hussman Institute for Autism

Institute for Exceptional Care (IEC)

International Council on Development and Learning (ICDL)

Lakeshore Foundation

Life’sPilot, Inc

National Association of Councils on Developmental Disabilities

National Association of County Behavioral Health and Developmental Disability Directors (NACBHDD)

National PLAN Alliance

National Respite Coalition 

Organization for Autism Research

Profound Autism Alliance

SPAN Parent Advocacy Network, Inc.

The Arc of the United States

The National Alliance to Advance Adolescent Health

The Sibling Leadership Network (SLN)

United Spinal Association

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