What my autistic son taught me about being brave in an age of fear
Unsplash / Ardiss Hutaff
When so many autistic people and their families are being threatened, he reminds me how to move forward.
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Last year, over spring break, I took my then 10-year-old son to Disneyland. For years, I had been reluctant to visit the park, unsure of how my son, who is autistic, would handle the large crowds, long lines, and sensory overload.
I needn’t have worried.
With accommodations that helped him avoid long waits and offered quiet, low-stimulation areas to reset, my son was able to fully enjoy the day. A Cars superfan, he beamed while posing for photos with Lightning McQueen and rode Mater’s Junkyard Jamboree so many times that he could recite all of the jokes and songs by heart. By the time we left that evening, he declared it “the best day ever.”
But what should have been a purely joyful day carried a dark shadow.
As I watched my son light up on each ride—growing more confident and adventurous as the day went on—one of Kennedy’s lines kept replaying in my head: “autism destroys families.”
When joy meets stigma
The day before our visit, Secretary of Health and Human Services (HHS) Robert F. Kennedy, Jr. held a news conference on autism. As I watched my son light up on each ride—growing more confident and adventurous as the day went on—one of Kennedy’s lines kept replaying in my head: “autism destroys families.”
Kennedy’s speech sparked widespread outrage. Like many autistic people and parents of autistic children, I found Kennedy’s depiction of autism ableist and dehumanizing. He claimed 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.” Kennedy later said he was referring to people with profound autism. Even so, the implication—that a child’s life is somehow less valuable because of autism—filled me with rage.
My son’s autism is intrinsic to who he is. It makes some things more challenging for him, particularly at school and in certain social situations. But his autism is also reflected in his sweetness and humor—the way he seeks out snuggles and tickles; the falsetto-voiced conversations we have with our dog, Ruby. Autism is not a tragedy that eclipses his humanity. It is a part of what makes him the kind, loving, inquisitive, multi-dimensional child I have the privilege of raising.
When we returned home, my rage morphed into fear.
The following week, National Institutes of Health (NIH) Director Dr. Jay Bhattacharya announced plans for a “new disease registry” to track Americans diagnosed with autism, combining data from sources including private insurance claims, pharmacies, and even smartwatches. After fierce pushback from advocates and scientists raising alarm about privacy and surveillance concerns, HHS walked back the proposal.
But the damage had already been done.
Why families are alarmed
Many people sprung into panic mode. I saw posts from moms in online forums inquiring whether they should delay having their children assessed or start filling prescriptions through Canadian pharmacies. These were loving parents who wanted their children to access the care and services that would best support them. But coming on the heels of Kennedy’s derogatory comments, we were all left to wonder: What might this administration do with identifying information about our children?
For many autistic people and parents of autistic children, those fears have only intensified in the months since.
As Kennedy has worked to advance his MAHA agenda—dismantling public health infrastructure and sowing public doubt in vaccines—autistic people have remained some of his most public scapegoats.
As Kennedy has worked to advance his MAHA agenda—dismantling public health infrastructure and sowing public doubt in vaccines—autistic people have remained some of his most public scapegoats. He has used demeaning and flattening portrayals of autistic individuals, alongside discredited theories about autism’s causes and prevalence, to stoke fear, fuel public distrust, and undermine critical scientific and health institutions.
But autism is not the mysterious “epidemic” or “preventable disease” that Kennedy portrays it to be. Researchers understand autism to arise from a complex interplay of genetic and environmental factors, not from vaccines, circumcision, or Tylenol use during pregnancy—despite Kennedy’s repeated false claims to the contrary. And the rise in diagnoses over the past generation is widely understood to reflect greater awareness, broader diagnostic criteria, and more comprehensive screening.
The real threats facing autistic families
As a parent of an autistic child, I worry daily about the impact of Kennedy’s policy decisions—and those of the broader Trump administration—on families like mine.
The tens of millions of dollars Kennedy slashed from autism research could dramatically reduce the development of evidence-based supports and interventions for future generations of autistic children. His purge of scientists from the Interagency Autism Coordinating Committee (IACC), along with his appointment of vaccine skeptics and proponents of unproven therapies, risks exposing autistic people to ineffective—or potentially dangerous—treatments while sending vulnerable parents down expensive, fruitless rabbit holes.
The looming $1 trillion in Medicaid cuts is likely to devastate autistic individuals’ and their families’ access to critical home- and community-based services, including respite care, employment support, and independent living assistance. In anticipation of this loss of federal funding, the governor of Idaho recently proposed eliminating home-care services for people with disabilities altogether, threatening their ability to live autonomous, independent lives.
The administration’s recently announced plans to move the Office of Special Education and Rehabilitative Services (OSERS) from the Department of Education to HHS could significantly weaken federal enforcement of the Individuals with Disabilities Education Act (IDEA), the landmark law that guarantees disabled children access to a free and appropriate public education. By recasting disability primarily as a medical issue, rather than an educational and civil rights one, the move could further marginalize disabled students and undermine efforts to promote their inclusion in schools and communities.
And even though Kennedy and other administration officials have stopped using the words “autism registry,” the administration has continued pursuing many of the same objectives through other means. Their Real World Data Platform, which combines data on autistic people from the NIH and the Center for Medicare and Medicaid Services (CMS), has been criticized for its lack of privacy protections and ethical safeguards. Nor are they stopping there. Just this month, it was reported that HHS was seeking access to additional repositories of identifiable patient data through state health-information in pursuit of Kennedy’s longstanding effort to validate the debunked claim that vaccines cause autism.
For many of us, the potential abuse of such data is too dark and terrifying to contemplate. But it would be dangerously naive to ignore what can happen when privacy risks are layered on top of public stigmatization and the systematic dismantling of social, educational, medical, and health systems.
The United States has a shameful history when it comes to disability rights. Forced sterilization, mass institutionalization, and the denial of public education to disabled students are not distant relics of another era; they are policies that continued through the 1970s, 1980s, and beyond. Even the term “Asperger’s Syndrome,” which still lingers in our popular lexicon despite no longer being an official diagnosis, is rooted in eugenics. Austrian physician Hans Asperger cooperated with the Nazi regime’s clandestine “child euthenasia program” by helping identify which disabled children were considered “promising” enough to live and which were systematically murdered.
History makes clear that promoting fear and spreading misinformation about disabled people is never harmless—especially when paired with attacks on civil rights and the public institutions and services that enable people to lead dignified lives.
History makes clear that promoting fear and spreading misinformation about disabled people is never harmless—especially when paired with attacks on civil rights and the public institutions and services that enable people to lead dignified lives. So while my rage and fear remain ever-present, I am choosing something else: bravery.
Choosing courage
Fortunately, I am not alone.
Earlier this year, 18 leading scientists and autism advocates—including several dismissed from the IACC by Kennedy—formed the Independent Autism Coordinating Committee, a science-based alternative intended to preserve serious, evidence-driven autism research and policy planning. The Autism Self-Advocacy Network and the American Association of People with Disabilities recently called on Congress to conduct oversight hearings—and possibly impeach—Kennedy over the “crisis of public trust” that his rhetoric and actions have unleashed. On the heels of the announcement that the Office of Special Education would be relocated to HHS, Rep. Suzanne Bonamici introduced articles of impeachment against Education Secretary Linda McMahon, alleging that she had violated her oath of office, misled Congress, and failed to comply with federal law. And on April 16, exactly one year after Kennedy’s infamous autism news conference, Pennsylvania Governor Josh Shapiro signed an executive order barring the state from sharing disability data with the federal government—a direct response to the administration’s autism data platform. In Pennsylvania, at least, autistic people’s private health data cannot be weaponized against them.
As I watched these advocates, scientists, and public officials take strong public stands, I thought back to that day at Disneyland and the way my son, cautious by nature, kept challenging himself to try bigger, faster, more thrill-seeking rides. Each time he climbed into a new one, I could see him deciding, in real time, whether or not he should give into his fear or move through it.
In this moment, when so many autistic people and their families are being asked to live under a cloud of uncertainty and threat, his behavior feels like the clearest model for how best to move forward: not in the absence of fear, but with the determination to keep going anyway.
Perhaps by banding together and building community, we, too, can experience joy along the way.
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