When so many autistic people and their families are being threatened, he reminds me how to move forward. By Julie Kohler. Updated Jun. 23, 2026.

Last spring, during a much-anticipated family vacation, a seemingly joyous outing to Disneyland was overshadowed by a disturbing undercurrent of fear and misinformation. While my then-10-year-old son, who is autistic, reveled in the magic of the park, his unadulterated delight was juxtaposed against unsettling public statements that cast a shadow over the autistic community and their families. This experience, at once personal and profoundly public, underscores the critical need for accurate understanding and compassionate dialogue surrounding autism, especially in an era where scientific consensus is increasingly challenged by divisive rhetoric.

The seeds of this unease were sown the day before our Disneyland adventure. A press conference concerning autism, held by then-candidate Robert F. Kennedy Jr., ignited a firestorm of controversy. His pronouncements, which characterized autism in starkly negative and, to many, dehumanizing terms, reverberated through the autistic community and among parents of autistic children. Kennedy Jr. stated that autistic children "will never pay taxes, they’ll never hold a job, they’ll never play baseball, they’ll never write a poem, they’ll never go out on a date." While he later clarified that his remarks were intended to refer to individuals with profound autism, the implication that a child’s life might hold less inherent value due to an autism diagnosis fueled widespread outrage and deep-seated anxiety.

For parents like myself, whose children navigate the world with the unique lens of autism, these words were not just misguided; they were actively harmful. My son’s autism is an integral part of his identity, shaping his experiences and interactions, but never diminishing his inherent worth or potential. His autism is woven into the fabric of his being, contributing to his sweetness, his unique sense of humor, and the deep connections he forms. It is not a tragedy, but rather a facet of his multidimensional personality, making him the kind, loving, and inquisitive child I cherish. The suggestion that his life, or the lives of any autistic individuals, could be characterized by a lack of contribution or fulfillment is not only inaccurate but deeply offensive.

This unsettling rhetoric was not an isolated incident. In the weeks that followed, the U.S. Department of Health and Human Services (HHS), under the direction of Secretary Robert F. Kennedy Jr., announced plans for a "new disease registry" to track Americans diagnosed with autism. This initiative, intended to combine data from various sources including private insurance claims, pharmacies, and even smart devices, immediately raised alarms among privacy advocates and scientists. Concerns about potential surveillance and the misuse of sensitive personal data were paramount. Although the proposal was eventually walked back following significant pushback, the initial announcement sent ripples of panic through the autistic community.

Online forums buzzed with anxious discussions. Parents questioned whether they should delay their children’s assessments or explore alternative avenues for obtaining necessary medical care. This reaction, born from a place of genuine concern for their children’s well-being and privacy, highlighted the profound lack of trust that had emerged. The confluence of inflammatory public statements and seemingly intrusive data-gathering initiatives created an environment of fear and uncertainty, leaving many to wonder about the administration’s intentions and the potential consequences for autistic individuals and their families.

The Political Landscape and Shifting Health Agendas

The period surrounding these events was marked by significant shifts in public health policy and discourse, largely influenced by the political climate of the time. The administration, often characterized by its skepticism towards established scientific institutions and its embrace of alternative health narratives, began to implement policies that directly impacted research, public health infrastructure, and the very definition of disease.

Robert F. Kennedy Jr.’s ascent to a prominent role within HHS signaled a departure from traditional public health approaches. His long-standing advocacy against vaccines and his promotion of discredited theories linking vaccines to autism became central to the administration’s health agenda. This ideological stance had tangible consequences:

• Dismantling Public Health Infrastructure: Kennedy Jr.’s agenda involved significant restructuring and defunding of established public health bodies. Millions of dollars were reportedly slashed from autism research, potentially hindering the development of crucial support systems and interventions for future generations.
• Undermining Scientific Consensus: Discredited theories about the causes and prevalence of autism were frequently amplified. Claims that autism was an "epidemic" or a "preventable disease" contradicted the scientific understanding that autism arises from a complex interplay of genetic and environmental factors. The administration repeatedly pushed false narratives linking autism to vaccines, circumcision, or common medications, despite overwhelming scientific evidence to the contrary. The increase in autism diagnoses over recent decades is widely attributed to greater awareness, broader diagnostic criteria, and more comprehensive screening, rather than an actual increase in incidence.
• Appointing Skeptics and Proponents of Unproven Therapies: The administration’s appointments to key advisory committees, such as the Interagency Autism Coordinating Committee (IACC), often favored individuals who questioned established science or promoted unproven and potentially dangerous alternative therapies. This risked exposing autistic individuals to ineffective treatments and misleading parents down expensive, fruitless paths.

These policy decisions and the accompanying rhetoric created a climate of vulnerability for the autistic community. The systematic dismantling of public health infrastructure, coupled with the propagation of misinformation, had far-reaching implications.

The Real Threats Facing Autistic Families

The impact of these policy shifts extended beyond rhetoric, directly threatening the access to essential services and support systems that autistic individuals and their families rely upon.

• Medicaid Cuts and Service Access: Proposed cuts to Medicaid, a critical funding source for home and community-based services, posed a significant threat. For many autistic individuals, these services are vital for independent living, employment support, and respite care for families. The potential loss of federal funding prompted states to consider drastic measures, such as eliminating home-care services altogether, jeopardizing the autonomy and well-being of people with disabilities.
• Weakening Educational Protections: The proposed relocation of the Office of Special Education and Rehabilitative Services (OSERS) from the Department of Education to HHS was a cause for considerable concern. This move risked diluting federal enforcement of the Individuals with Disabilities Education Act (IDEA), a landmark law guaranteeing access to free and appropriate public education for children with disabilities. By reframing disability primarily as a medical issue rather than an educational and civil rights matter, the administration could marginalize disabled students and undermine efforts toward their inclusion.
• Data Privacy and Surveillance Concerns: Despite the shelving of the "autism registry" proposal, the administration continued to pursue data aggregation initiatives, such as the "Real World Data Platform." This platform combined data from the NIH and CMS, drawing criticism for its inadequate privacy protections. Furthermore, reports indicated HHS was seeking access to additional patient data repositories to investigate debunked theories about vaccine-autism links. The potential for misuse of this identifiable data, especially when layered with public stigmatization, presented a chilling prospect, echoing historical instances of discrimination against vulnerable populations.

A Look Back at Historical Parallels

The anxieties surrounding data collection and the stigmatization of disabled individuals are not without historical precedent. The United States has a deeply troubling history of disability rights abuses, including forced sterilization, mass institutionalization, and the denial of basic educational rights. Even seemingly innocuous terms, like "Asperger’s Syndrome," carry historical baggage, rooted in the work of Hans Asperger, who collaborated with the Nazi regime’s eugenics programs. This history serves as a stark reminder that the promotion of fear and misinformation about disabled people, particularly when coupled with attacks on civil rights and public institutions, can have devastating and enduring consequences.

The Fight for Courage and Community

In the face of these challenges, a spirit of resistance and resilience has emerged. The autistic community and their allies have actively pushed back against the harmful rhetoric and policies.

• Independent Advocacy: Leading scientists and autism advocates, some of whom were removed from official committees by Kennedy Jr., formed the Independent Autism Coordinating Committee (IACC). This independent body aims to preserve evidence-driven autism research and policy planning.
• Calls for Accountability: Organizations like the Autism Self-Advocacy Network and the American Association of People with Disabilities have called for congressional oversight hearings and even impeachment proceedings against Secretary Kennedy Jr., citing a "crisis of public trust."
• Legal and Political Action: Legislators have introduced articles of impeachment against education officials for alleged violations of oath and federal law. In a significant move, Pennsylvania Governor Josh Shapiro signed an executive order barring the state from sharing disability data with the federal government, directly responding to the administration’s data platform and ensuring that private health data could not be weaponized.

Witnessing these collective efforts, the author of the original article reflected on her son’s experience at Disneyland. His willingness to confront his fears and embrace new experiences, despite his innate caution, offered a powerful metaphor for navigating the current climate of uncertainty. This personal anecdote underscores the central theme: the importance of courage, not as the absence of fear, but as the determination to move forward despite it.

The author concludes by emphasizing the strength found in unity and community. By banding together, advocates, families, and individuals can not only counter the harmful narratives but also foster an environment where autistic individuals can thrive, experiencing joy and fulfillment without the constant shadow of stigma and fear. The journey ahead requires vigilance, advocacy, and a steadfast commitment to truth and compassion, drawing inspiration from the inherent bravery of those who continue to navigate the world with courage and resilience.