WASHINGTON — Autism and vaccines once again became the focus of a high-profile Senate confirmation hearing as lawmakers questioned Dr. Erica Schwartz, President Donald Trump’s nominee to lead the Centers for Disease Control and Prevention, about whether she would protect the agency’s scientific independence amid continued scrutiny of federal vaccine policy.

The hearing before the Senate Health, Education, Labor and Pensions Committee centered on concerns that the CDC could face political pressure to alter public messaging about vaccines and autism under Health and Human Services Secretary Robert F. Kennedy Jr., who has repeatedly questioned vaccine safety despite decades of research finding no causal link between vaccines and autism.

Sen. Bill Cassidy, R-La., a physician who chairs the committee, repeatedly asked Schwartz whether she would defend established science if challenged.

“Will you have the ability to say no to junk science, and to say yes to that which has been firmly established, and to stick up for what is actually right and true?” Cassidy asked during the hearing.

Schwartz responded that scientific evidence—not politics—would guide her decisions.

“I will never betray the science ever. I will go where the science leads us. I will not have predetermined answers or conclusions,” she told lawmakers.

Still, several senators expressed frustration that Schwartz declined to directly answer whether she would oppose Kennedy if asked to change CDC guidance or remove information supporting the scientific consensus on vaccines and autism. She repeatedly said she would lead with integrity while avoiding hypothetical questions about disagreements with the health secretary.

The exchange underscores how autism remains intertwined with national vaccine debates despite extensive scientific research spanning more than two decades.

According to the CDC, approximately 1 in 31 8-year-old children in the United States has been identified with autism spectrum disorder, reflecting continued increases in diagnosis and awareness. At the same time, researchers have conducted numerous large-scale studies involving hundreds of thousands of children in multiple countries examining whether vaccines contribute to autism. Those studies have consistently found no evidence of a causal relationship, a conclusion maintained by the CDC, National Institutes of Health, American Academy of Pediatrics and World Health Organization.

For many families, however, the recurring political debate feels disconnected from the daily realities of raising an autistic child.

Parents continue to navigate lengthy waitlists for diagnostic evaluations, shortages of behavioral and developmental services, increasing educational needs, and the transition to adulthood. According to federal education data, more than 900,000 students nationwide receive special education services under the autism eligibility category, making autism one of the fastest-growing disability classifications in public schools.

Advocates have increasingly argued that while vaccine questions continue to dominate headlines, families are searching for answers to different questions: How can children access therapies sooner? How can schools better support communication and independence? What happens when autistic students age out of special education?

The CDC itself faces a period of significant transition. The agency has operated without a permanent director for months while also confronting workforce reductions, leadership turnover and renewed public scrutiny over vaccine communication. If confirmed, Schwartz would lead one of the nation’s most influential public health agencies during a period of heightened political and scientific tension.

Whether Schwartz ultimately wins Senate confirmation remains uncertain, but the hearing demonstrated that autism is likely to remain at the center of national public health discussions.

For many families, though, the larger question is no longer whether vaccines cause autism—a question the scientific community considers settled—but whether national attention can shift toward improving the lives of the growing number of autistic children and adults already living with the condition.

As lawmakers debate scientific messaging in Washington, parents across the country continue to wait for expanded services, stronger educational supports, increased access to therapies and practical solutions that extend far beyond the vaccine debate.

Parents spend years preparing for milestones. The first day of kindergarten. The transition to middle school. Learning to drive. High school graduation. Each one comes with conversations, planning and expectations.

But for families raising children with disabilities, there is another milestone that often arrives with little warning. It is not marked on a calendar or celebrated with a ceremony. It is the moment families realize that school is coming to an end—and with it, an entire system of supports that has been in place for years.

For many parents, that realization comes far too late.

Under the Individuals with Disabilities Education Act (IDEA), students with disabilities are entitled to receive special education services through their local school district while they remain eligible. Those services can include speech therapy, occupational therapy, physical therapy, transportation, vocational instruction and transition planning. Once a student exits school, however, that educational entitlement ends. Adult services operate under a completely different system, with different eligibility requirements, funding sources and waiting lists.

That transition can feel abrupt, even for families who have spent years advocating for their children.

Many parents assume transition planning begins during their child’s final year of school. In reality, federal law requires transition services to be included in a student’s Individualized Education Program (IEP) no later than age 16, while some states, including New York, require transition planning to begin by age 14. Those early years are intended to give students time to develop vocational skills, explore community experiences and begin preparing for adult life before graduation ever arrives.

Unfortunately, many families do not realize how much planning is expected until the countdown has already begun.

The final years of school often introduce an overwhelming number of decisions. Families may need to explore adult service agencies, vocational rehabilitation programs, Medicaid eligibility, Supplemental Security Income, guardianship or supported decision-making options, transportation, employment supports, post-secondary education, day programs and long-term housing possibilities. Each program has its own application process, timelines and eligibility criteria. No single meeting or agency coordinates every piece of the transition.

As a result, many parents suddenly find themselves serving as the coordinator of an entirely new system.

That responsibility extends beyond paperwork. Graduation often represents a profound emotional transition for families. School has provided structure, routines, familiar staff and daily supports for years. Parents know the teachers, therapists and administrators who have become part of their child’s life. When those relationships end, families frequently describe feeling as though they have stepped into unfamiliar territory without a clear roadmap.

Many parents of adults with disabilities describe this transition as “falling off a cliff.” The routines remain, but the systems that supported them change almost overnight.

Research suggests that beginning transition planning earlier leads to better outcomes. Early planning provides more opportunities for students to participate in community experiences, develop employment skills, explore post-secondary options and establish relationships with adult service providers before they leave school. It also gives families time to organize important records, understand eligibility requirements and prepare for the practical realities of adulthood without the pressure of an approaching graduation date.

Parents do not need to have every answer immediately. They do, however, benefit from asking the right questions long before the final school year begins.

What will my child’s daily life look like after graduation? Which services currently provided through school will continue—and which will not? What agencies should we already be working with? Are transition goals in the IEP preparing my child for adult life? Have we explored employment opportunities, volunteer experiences or community programs? Are our important evaluations, records and legal documents organized and easy to access?

These questions are not meant to create anxiety. They are intended to create opportunity.

Too often, families discover that the final year of school arrives faster than expected. The months become filled with meetings, paperwork, applications and deadlines, leaving little time to thoughtfully plan for the years that follow. Starting earlier allows families to make decisions deliberately instead of reactively.

Graduation should not mark the beginning of transition planning. It should represent the final step in a process that has been developing over several years.

The earlier families begin preparing, the more time they have to build supports, explore options and create a future that reflects their child’s strengths, interests and goals.

Preparing for Your Child’s Final Year of School – A Parent Transition Planner

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Transition planning can feel overwhelming because there are so many moving pieces. Our Preparing for Your Child’s Final Year of School workbook was created to help families stay organized every step of the way. Inside you’ll find planning worksheets, meeting organizers, document trackers, transition checklists and practical tools designed to help you prepare for life after school with greater confidence. Whether your child is one year away from graduation or several years out, starting early can make all the difference.

For decades, the disability rights movement has worked toward a single goal: ensuring people with disabilities have the opportunity to live, work and participate in their communities rather than in large institutions.

Today, a growing number of parents, self-advocates and disability organizations are asking whether that progress could one day be reversed.

Across social media and advocacy groups, concerns have intensified amid debates over Medicaid funding, state budgets and long-term care services. Some families fear that reductions in community-based supports could leave states with fewer options for individuals with significant disabilities, raising questions about whether institutional care could once again become more common.

The anxiety is understandable.

For many families raising children with autism, intellectual disabilities or complex medical needs, community supports are not simply conveniences. They include home health aides, occupational therapy, speech-language services, respite care, supported employment, transportation and residential assistance. Together, those services often make independent or family-based living possible.

As policymakers debate the future of Medicaid and disability services, many families worry about what could happen if those supports were reduced.

But legal experts say it is important to separate fear from current law.

Under existing federal law, states cannot simply place a person with a disability into an institution because they have a disability. Individuals retain constitutional due process rights, and numerous federal protections limit when and how institutional placements can occur.

One of the strongest legal safeguards is the Americans with Disabilities Act.

In 1999, the U.S. Supreme Court issued its landmark decision in Olmstead v. L.C., holding that unnecessary institutionalization of people with disabilities constitutes discrimination under the ADA. The Court concluded that public entities generally must provide services in the most integrated setting appropriate to an individual’s needs when community placement is appropriate, the individual does not oppose it and the placement can be reasonably accommodated.

The decision fundamentally changed disability policy in the United States.

Rather than assuming institutional care was the default option, states were encouraged to expand community-based services that allow people with disabilities to live in homes, apartments and neighborhoods alongside everyone else.

The result has been a decades-long shift away from large state institutions.

Many Americans, however, remember what those institutions once represented.

Throughout much of the 20th century, thousands of children and adults with developmental disabilities lived in large residential facilities, often isolated from their families and communities. Investigations documented overcrowding, inadequate medical care, neglect and abuse in some facilities. Those findings helped fuel the disability rights movement and led many states to close institutions in favor of community-based supports.

That history remains deeply personal for many families.

Parents who spent decades advocating for inclusive education, supported employment and independent living often view any discussion of reducing community services through the lens of that experience. Even if institutionalization is not the stated goal of proposed policy changes, they worry that fewer services could leave families with limited alternatives.

Disability advocates frequently describe the issue as one of practical choice rather than legal authority.

If waiver programs develop years-long waiting lists, if direct support professionals become unavailable or if families lose access to respite services, remaining at home may become increasingly difficult. In those circumstances, institutional settings or other congregate care options may appear to be the only available solution, even if families would prefer community-based living.

The concern, advocates say, is not necessarily that states will suddenly begin forcing people with disabilities into institutions. Rather, it is that shrinking community resources could reduce meaningful choices for individuals and families already struggling to find services.

Those concerns have been amplified by nationwide workforce shortages.

Providers across the country report difficulty hiring and retaining direct support professionals who assist individuals with disabilities in their homes and communities. Low wages, demanding work and high turnover have strained disability service systems in many states. As a result, some families already face long waits for in-home supports despite existing legal protections.

Experts note that community living depends on more than court decisions.

Federal disability laws establish important rights, but those rights require sufficient funding, qualified providers and coordinated services to become reality. Without those resources, families may find themselves navigating increasingly limited options even while legal protections remain in place.

Disability organizations continue to monitor proposals affecting Medicaid, home- and community-based services and state disability budgets closely. Many argue that preserving community living requires sustained investment in the programs that allow people with disabilities to remain with their families or live independently.

At the same time, legal scholars emphasize that current law continues to provide significant protections against unnecessary institutionalization. Changes to those protections would require substantial legislative or judicial action rather than occurring automatically through budget reductions alone.

For families, however, the conversation extends beyond legal standards.

It is about trust.

Parents who have spent years building networks of therapists, caregivers, educators and medical professionals know how fragile those systems can be. They worry less about a single policy change than about a gradual erosion of the services that make community living possible.

The question many families are asking is therefore broader than whether states can legally institutionalize people with disabilities.

They are asking whether the nation will continue investing in the supports that have made community inclusion possible over the past generation.

For disability advocates, the answer will shape not only where people with disabilities live, but how fully they are able to participate in American society.

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Editor’s Note: This article examines current federal disability law and concerns expressed by families and advocates. Under existing law, the Americans with Disabilities Act and the Supreme Court’s Olmstead v. L.C. decision provide significant protections against unnecessary institutionalization. Policy debates surrounding Medicaid and disability services continue to evolve, and readers should distinguish between current legal protections and proposals that may be under discussion.

We also encourage readers to stay informed about disability policy at the local, state and federal levels. Legislative proposals, budget decisions and administrative changes can directly affect services, funding and community supports. Regardless of political affiliation, understanding where elected officials stand on issues affecting people with disabilities—and participating in the civic process through public meetings, advocacy efforts and elections—helps ensure individuals and families can make informed decisions about policies that may impact their lives.

When a child is removed from their home, the goal is straightforward: protect them from harm.

For children with disabilities, however, protection means more than placing them in a safe house. It means maintaining therapies, preserving routines, supporting communication, providing appropriate medical care and ensuring caregivers understand the child’s unique developmental needs.

The recent case of Matthew Floyd, a Tennessee boy with autism, has raised difficult questions about whether America’s child welfare system is prepared to meet those responsibilities.

Matthew, who has level-two autism, attention-deficit/hyperactivity disorder and additional developmental needs, was removed from his parents by the Tennessee Department of Children’s Services after concerns were reported involving the family. His two teenage sisters were also removed from the home. According to court records and an investigative report by Nashvi…

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For most parents raising a child with a disability, the greatest source of anxiety isn’t the next Individualized Education Program meeting or the next doctor’s appointment.

It’s what happens when they’re no longer here.

As advances in medicine, early intervention and community-based services help people with intellectual and developmental disabilities live longer, healthier lives, a new challenge is emerging across the United States: Who will become the next generation of advocates?

According to the U.S. Census Bureau, roughly 1 in 4 American adults lives with a disability, while millions of children receive special education services under the Individuals with Disabilities Education Act each year. At the same time, family caregivers are aging. Many parents who have spent decades navigating Medicaid, Social Security, housing programs and complex support systems are now entering their 60s, 70s and 80s. The result is a growing national conversation about succession planning—not for busines…

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For years, one of the most common medications used during pregnancy became the center of a growing autism controversy.

Studies, headlines, lawsuits and social media posts raised concerns that acetaminophen — better known by the brand name Tylenol — might increase the risk of autism and attention-deficit/hyperactivity disorder in children. The claims spread rapidly through parenting groups, advocacy circles and online communities searching for answers about rising autism diagnoses.

The theory seemed to fit a familiar pattern. Autism rates were increasing. Parents wanted answers. Researchers were investigating possible environmental factors. Attorneys were filing lawsuits. Social media was amplifying every new study. Before long, many people had moved beyond discussing whether a possible link existed and instead began treating the claim as established fact.

Now, some of the largest and most rigorous studies conducted on the issue have reached a very different conclusion.

Researchers analyzi…

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Federal auditors have identified tens of millions of dollars in improper Medicaid payments tied to autism-related services in multiple states, including Indiana and Maine. The findings have prompted increased oversight, provider reviews and discussions about whether the nation’s rapidly expanding autism-services system can continue operating under its current model.

At the center of the debate is a difficult question: Are these audits uncovering widespread fraud, or are they exposing the challenges of overseeing an industry that has grown faster than regulators anticipated?

The answer may be both.

Over the past decade, autism prevalence has continued to rise. The Centers for Disease Control and Prevention now estimates that 1 in 31 children in the United States has been identified with autism spectrum disorder, a dramatic increase from previous generations. As diagnoses increased, demand for services expanded alongside them.

ABA therapy emerged as one of the most widely funded autism inte…

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For decades, autism was a diagnosis few families expected to hear and even fewer professionals fully understood. Services were limited, insurance coverage was rare, and parents often found themselves navigating a fragmented system with little guidance and even fewer treatment options.

Today, the picture looks dramatically different. Applied Behavior Analysis, commonly known as ABA, has become the dominant therapy in autism care. Thousands of clinics operate across the country. Medicaid programs spend billions of dollars annually on behavioral services. Private equity firms have invested heavily in autism provider networks, and nearly every state now requires some form of autism insurance coverage. At the same time, ABA has become the subject of increasing scrutiny from aut…

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Parents seeking autism services, Medicaid supports and specialized therapies often looked to Colorado as a place where help was more readily available than in many other parts of the country. The state’s Medicaid program covered Applied Behavior Analysis, or ABA, therapy for eligible children with autism, and a growing network of providers helped meet increasing demand. As autism diagnoses rose nationwide, Colorado became a destination for some families seeking access to services that were difficult to obtain elsewhere.

Now that same system is facing one of the most significant oversight overhauls in its history.

A federal audit conducted by the U.S. Department of Health and Human Services Office of Inspector General found that Colorado made at least $77.8 million in improper fee-for-service Medicaid payments for ABA therapy provided to children with autism. Auditors also identified an additional $207 million in payments that may have been improper but could not be fully verified becaus…

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As the school year comes to a close, many families are looking forward to summer vacation. For some students with disabilities, however, a long break from structured instruction can result in the loss of hard-earned skills. Extended School Year, commonly known as ESY, was created to address that concern by providing specialized education and related services beyond the traditional school calendar.

ESY services are designed to help eligible students maintain progress toward their Individualized Education Program goals and prevent significant regression during extended breaks. While many parents have heard of ESY, confusion remains about who qualifies, how eligibility is determined and what families can do to support progress throughout the year.

The Individuals with Disabilities Education Act requires school…

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Texas Children’s Hospital and Baylor College of Medicine have been awarded up to $17.25 million to join an international autism research network designed to accelerate the development of precision therapies for autistic individuals and people with related neurodevelopmental disorders. The grant places the Houston institutions among the first 12 sites worldwide selected to participate in the Innovative Medicine and Precision Approaches to Clinical Trials (IMPACT) Network, an initiative funded through Aligning Research to Impact Autism (ARIA).

The announcement is significant not only because of the size of the award, but because it raises a larger question: Why were Texas Children’s and Baylor chosen?

The answer lies in more than a decade of investment in autism genetics, neuroscience and clinical care.

According to ARIA, the IMPACT Network was created to address a longstanding challenge in autism research. While scientists have made substantial progress identifying genes and biological pa…

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For decades, autism researchers have searched for the genetic factors that contribute to autism spectrum disorder. Hundreds of genes have been linked to autism, helping scientists better understand how the condition develops and why autistic individuals can have such diverse experiences.

Most of those discoveries, however, have come with a familiar challenge. The same genetic changes associated with autism often affect many other aspects of development, including learning, memory, attention, language, and intellectual functioning. As a result, researchers have struggled to separate the biology underlying autism’s core characteristics from the biology involved in broader developmental disabilities.

A new study may offer an important clue.

Researchers have identi…

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For months, disability advocates have focused on Texas v. Kennedy as a legal battle over federal disability protections. The lawsuit, brought by Texas and a coalition of states, challenges portions of updated Section 504 regulations and has raised concerns about the future of disability rights in the United States.

But for many families, the larger question extends beyond the courtroom.

What happens if states succeed in reducing their obligations under federal disability law while simultaneously facing pressure from changes to Medicaid funding and administration?

Advocates warn that the answer could reshape how disability services are delivered across the country, creating new challenges for families already struggling to access supports.

Beyond the Lawsuit

Much of the public discussion surrounding Texas …

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For many families raising children with disabilities, the 18th birthday arrives with a mixture of pride, excitement and anxiety. While most parents recognize the milestone as the transition into adulthood, many are surprised to learn just how much changes legally when a child turns 18. Whether a young adult has autism, an intellectual disability, Down syndrome, cerebral palsy, a mental health condition or another disability, reaching adulthood can significantly alter who has the authority to make educational, medical and financial decisions.

One of the most common misconceptions among parents is that their role remains unchanged simply because their child is still in high school. In reality, the law generally views an 18-year-old as an adult regardless of whether that individual continues to receive special education services. While students may remain eligible for educational supports until age 21 or older depending on state law, many legal rights transfer from parent to student at ag…

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Across the United States, school districts are struggling to fill special education teaching positions. From rural communities to major metropolitan areas, vacancies remain open for months, classrooms are staffed by substitutes or uncertified personnel, and students with disabilities are increasingly bearing the consequences of a workforce crisis that has been years in the making. While policymakers often focus on recruitment campaigns and emergency certification programs, many educators say the root problem is far simpler: becoming a special education teacher is expensive, demanding and emotionally taxing, while the compensation often fails to reflect those realities.

For many aspiring special education teachers, the path begins with a bachelor’s degree in education or a …

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When Texas v. Kennedy first entered public debate, much of the attention centered on gender dysphoria language contained within the Biden administration’s 2024 revisions to Section 504 of the Rehabilitation Act. But as disability advocates and legal analysts have increasingly noted, the lawsuit raises broader questions that extend far beyond a single provision of federal disability law.

Among the most important questions is why so many states chose to join the litigation in the first place.

The coalition challenging the federal government includes a group of predominantly Republican-led states, many of which face similar pressures related to Medicaid spending, disability services and long-term care systems. While public discussion often focuses on legal arguments surrounding federal authority, the lawsuit also sits at the intersection of a growing debate over who should bear responsibility for funding and administering disability supports in America.

For decades, disability policy has gr…

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For many families, the recommendation comes almost immediately after concerns about a child’s development begin to emerge.

A toddler isn’t speaking on time. A preschooler struggles to interact with peers. A teacher raises concerns about attention, behavior or learning. Parents mention autism, ADHD or developmental delays to their pediatrician and often hear the same advice: “You should see a developmental pediatrician.”

For some families, that recommendation can feel reassuring. For others, it marks the beginning of a frustrating journey through waitlists that can stretch six months, a year or even longer. Yet despite the growing demand for developmental pediatricians, many parents remain unclear about w…

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Our article, “Who Benefited When Asperger’s Syndrome Disappeared?” was originally published behind a paywall. That was our mistake.

We believe disability reporting, policy coverage, and stories that affect our community should be as accessible as possible. While subscriber support helps us continue this work, we never want important conversations to be limited to those who can afford to pay for them.

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If you find value in our reporting and would like to support independent journalism focused on autism, disability rights, education, healthcare, and public policy, we hope you’ll consider subscribing. Your support allows us to continue investigating the issues that matter to our community.

But whether you’re a paid subscriber, a free subscriber, or simply someone who reads and shares our work, you’re part of this conversation.

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More than a decade after Asperger’s syndrome officially disappeared from the American diagnostic manual, debate over the change has never fully gone away. For some autistic adults and families, the removal represented overdue progress toward a broader understanding of autism as a spectrum. For others, it felt like the loss of an identity, a language and a diagnosis that once helped explain a very specific lived experience.

In 2013, the American Psychiatric Association released the DSM-5, the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders used by clinicians across the United States. One of the most consequential changes involved autism diagnoses. Asperger’s syndrome, autistic disorder and pervasive developmental disorder-not otherwise specified, or PDD-NOS, …

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For decades, America told itself a story about progress.

Large state institutions closed. Disability rights laws expanded. Children with disabilities entered public schools in greater numbers. The language of “integration,” “inclusion,” and “community living” replaced the cold architecture of segregation that once defined life for many people with intellectual and developmental disabilities.

But beneath the surface of modern disability policy, a quieter shift may now be underway.

Across the country, a growing number of families, providers and policymakers are revisiting forms of residential and congregate care once thought to belong to America’s past. The names have changed. The buildings are newer. The marketing language is softer. But advocates and historians warn that some of today’s “specialized campuses,” “autism villages,” “stabiliza…

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