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

The annual pilgrimage to Disneyland, a tradition many families cherish, took on a different hue for me last spring break. My then 10-year-old son, who is autistic, had long been fascinated by the magic of Disney, but the prospect of navigating the park’s overwhelming sensory landscape – the throngs of people, the cacophony of sounds, the long queues – had always daunted me. This year, however, armed with the park’s accessibility accommodations, we embarked on the adventure. To my profound relief and immense joy, my son thrived. He reveled in meeting his hero, Lightning McQueen, and rode Mater’s Junkyard Jamboree repeatedly, his laughter echoing with each joyful rendition of the attraction’s songs. His declaration, "the best day ever," was a testament to a day that transcended his unique needs and embraced pure, unadulterated happiness.

Yet, as the day unfolded, a chilling echo from a recent political event cast a shadow over our otherwise jubilant experience. The words of Robert F. Kennedy Jr., spoken at a press conference just days prior, replayed in my mind: "autism destroys families." This juxtaposition of my son’s unbridled joy against the backdrop of public stigmatization and potential governmental overreach created a profound internal conflict.

The Stigma of a Statement: RFK Jr.’s Remarks and Their Aftermath

The press conference in question, held on April 16, 2025, by then-Secretary of Health and Human Services Robert F. Kennedy, Jr., focused on autism. His subsequent remarks, widely reported and met with widespread condemnation, painted a bleak and dehumanizing picture of autistic individuals. Kennedy Jr. asserted 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 his statement to refer to individuals with profound autism, the underlying implication – that a life lived with autism holds less inherent value – ignited a firestorm of outrage among the autistic community, their families, and disability advocates.

For parents like myself, whose children’s autism is an intrinsic part of their identity, these pronouncements were not just offensive; they were deeply damaging. My son’s autism, while presenting unique challenges, also enriches his life and ours. It manifests in his deep affection, his unique sense of humor, and his inquisitive nature. Autism is not a tragedy that defines his entire existence, but rather a facet of his complex and beautiful humanity. The idea that such a fundamental aspect of his being could be framed as destructive is not only inaccurate but also profoundly hurtful.

The fear and anger ignited by Kennedy Jr.’s rhetoric were amplified by subsequent policy proposals. The following week, the National Institutes of Health (NIH) announced plans for a "new disease registry" aimed at tracking individuals diagnosed with autism. This initiative, intended to combine data from various sources including private insurance, pharmacies, and even wearable technology, immediately raised alarm bells among privacy advocates and scientists. Concerns about potential surveillance, data misuse, and the weaponization of personal health information were palpable. While the Department of Health and Human Services (HHS) eventually walked back the proposal under intense pressure, the damage to trust had already been done.

A Timeline of Alarm: From Rhetoric to Policy Concerns

The events of April 2025 marked a significant turning point, initiating a period of heightened anxiety for many families within the autism community.

• April 16, 2025: Secretary of Health and Human Services Robert F. Kennedy, Jr. holds a press conference on autism, making controversial statements that characterized autism as "destroying families" and listing perceived limitations of autistic individuals.
• April 23, 2025: The NIH announces plans for a "new disease registry" to track individuals diagnosed with autism, raising immediate privacy and surveillance concerns.
• Late April 2025: Fierce backlash from autism advocates, scientists, and the public leads HHS to retract the proposed disease registry.
• May 2025 onwards: Ongoing policy decisions and rhetoric from the administration continue to fuel anxieties, particularly concerning the dismantling of public health infrastructure and the propagation of misinformation about autism’s causes.
• June 2026: The article is published, reflecting on the persistent fears and the proactive steps taken by advocates and some governmental bodies in response to the ongoing concerns.

The Real Threats to Autistic Families: Policy Implications and Data Security

The concerns extend far beyond mere rhetoric. The administration’s broader agenda, often characterized by efforts to dismantle public health infrastructure and sow doubt in scientific institutions, has had tangible impacts on the autism community.

Research Funding Cuts: The reduction of tens of millions of dollars allocated to autism research by the Kennedy-led administration poses a significant threat. This funding is critical for advancing evidence-based interventions, diagnostic tools, and support systems for autistic individuals. A decrease in research investment can slow down progress, limit the development of new therapies, and ultimately hinder the quality of life for future generations of autistic children and adults.

Compromised Advisory Boards: The purging of scientists from the Interagency Autism Coordinating Committee (IACC) and the appointment of individuals with known vaccine skepticism or who promote unproven therapies is another grave concern. This shift undermines the scientific integrity of advisory bodies and risks exposing autistic individuals to ineffective or potentially dangerous treatments. It also erodes public trust in established medical and scientific institutions.

Medicaid Cuts and Service Disruptions: The proposed $1 trillion in Medicaid cuts presents a dire threat to essential home- and community-based services that are crucial for autistic individuals and their families. These services include respite care, employment support, and assistance with independent living. The potential loss of this funding could lead to widespread disruption, forcing families to bear immense burdens and potentially limiting the autonomy and well-being of autistic adults. For instance, in March 2026, Idaho’s governor proposed eliminating home-care services for people with disabilities, a move directly linked to anticipated federal funding cuts, illustrating the immediate real-world consequences.

Relocation of Special Education Services: The administration’s plan to move the Office of Special Education and Rehabilitative Services (OSERS) from the Department of Education to HHS carries significant implications. While framed as a potential integration of services, critics fear it could weaken federal enforcement of the Individuals with Disabilities Education Act (IDEA). By reframing disability primarily as a medical issue rather than an educational and civil rights concern, this move could further marginalize disabled students and hinder efforts toward their inclusion.

Persistent Data Collection Efforts: Despite walking back the "autism registry" proposal, the administration has continued to pursue data collection initiatives. The "Real World Data Platform," which consolidates data on autistic individuals from NIH and CMS, has faced criticism for inadequate privacy protections. Furthermore, reports from May 2025 indicated HHS was seeking access to additional state health information repositories. The stated goal, according to critics, is to bolster Kennedy Jr.’s long-held, scientifically debunked theories linking vaccines to autism. This persistent pursuit of identifiable patient data, especially when layered with public stigmatization and the erosion of support systems, raises profound ethical and security concerns.

Historical Context: The Perils of Stigmatization and Misinformation

The current climate of fear and stigmatization surrounding autism is not without historical precedent. The disability rights movement has fought against centuries of discrimination, including forced sterilization, institutionalization, and the denial of basic rights. Even seemingly innocuous terms, like "Asperger’s Syndrome," have roots in problematic historical associations, including the cooperation of its namesake with the Nazi regime’s eugenics programs. The history of disability rights underscores a critical lesson: promoting fear and misinformation about marginalized groups, especially when coupled with attacks on civil rights and essential public services, can have devastating and far-reaching consequences.

Choosing Courage: Advocacy and Resilience in the Face of Adversity

Despite the mounting challenges, the autism community and its allies are not succumbing to fear. Instead, a powerful wave of advocacy and resilience is emerging.

The Independent Autism Coordinating Committee (IACC): In response to the administration’s actions, 18 leading scientists and autism advocates, many of whom were removed from the official IACC by Kennedy Jr., formed the Independent Autism Coordinating Committee. This initiative aims to ensure that vital autism research and policy planning remain science-based and evidence-driven.

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 Kennedy Jr. for creating a "crisis of public trust."

Legislative Action: In a significant move in April 2026, Pennsylvania Governor Josh Shapiro signed an executive order barring the state from sharing disability data with the federal government. This action was a direct response to the administration’s data platform and serves as a crucial safeguard for the privacy of autistic individuals in Pennsylvania. Similarly, Rep. Suzanne Bonamici introduced articles of impeachment against Education Secretary Linda McMahon, citing her role in the controversial relocation of OSERS.

The author’s personal experience at Disneyland serves as a poignant metaphor for the broader struggle. Witnessing her son’s courage in embracing new experiences, despite his innate caution, mirrors the spirit of the autism community. In an era marked by fear and uncertainty, the ability to move forward, not in the absence of fear but with the determination to persevere, is a testament to their resilience. By banding together, fostering community, and actively advocating for their rights and well-being, autistic individuals and their families are demonstrating that courage, not fear, is the path forward, paving the way for a future where joy and inclusion can flourish.