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AS THE PARENTS of a 13-year-old son with profound autism, my wife and I have spent years navigating a world of challenges, uncertainties, and misguided assumptions. One of the most dangerous and persistent myths is the false assertion that vaccines cause autism, a claim that has been debunked by scientists, doctors, and public health experts worldwide.
Research into its origins, conducted by the National Institutes of Health, the Centers for Disease Control and Prevention, Autism Speaks, as well as numerous foundations and universities, has focused on genetics, neurology, environmental factors, and the gut-brain connection.
This isn’t intended to minimize in any way the individual cases of children who have vaccine sensitivities or suffered severe reactions. Yet, with last week’s confirmation of Robert F. Kennedy Jr. as health and human services secretary, we are confronted with the reality of the nation’s highest authority on health care believing in junk theories about our wellbeing.
When policymakers cling to misinformation, it distracts from the urgent needs of families like mine. Autism isn’t a condition to be feared or “blamed” on vaccines—it’s a developmental disability that requires understanding, resources, and support. If Kennedy doesn’t recognize that, he remains unfit to lead, regardless of the more widely accepted and popular beliefs he holds about issues such as ultra-processed foods.
In addition to the daily struggles that come with caring for a child with special needs, my family, and others like ours, are faced with incessant challenges such as filling out endless amounts of paperwork; waiting years for space in after-school programs to become available; and spending countless hours on the phone with insurers to secure therapies and navigate a health care system that often overlooks the needs of autistic individuals or doesn’t understand how certain therapies can be vital to our children’s wellbeing.
Our son was diagnosed with autism at age two after observations made during early intervention, and he’s received applied behavioral analysis (ABA) therapy ever since. ABA uses positive reinforcement to encourage helpful behaviors while reducing behaviors that are harmful and interfere with daily life. His school, Nashoba Learning Group in Bedford, applies the scientifically validated principles of ABA with compassion. Because of this, our son has better attention and focus, is able to follow two-step directions, and can communicate his needs with limited speech more effectively.
In Massachusetts, the waiting list for ABA services can be painfully long, with some families and children waiting up to 12 months just for an evaluation—and then another 12 months for services due to high demand and lack of providers.
With approximately 1 in 36 children in the United States now diagnosed with autism, the next four years are critical to expanding services, building up the human services workforce, and identifying more effective and evidence-based therapies.
Just last week, we were dealt another challenge when our son was diagnosed with a seizure disorder. Studying the link between autism and epilepsy is a prime example of the legitimate research HHS should be funding when it comes to improving the health of our loved ones. This is in addition to ensuring better insurance coverage for therapies and supporting programs that help autistic individuals lead fulfilling lives, instead of promoting ideas lacking scientific backing.
Based on his history, RFK is far from the advocate the autism community needs at this pivotal time; his history of promoting unscientific research and basic lack of knowledge of how Medicaid works are evidence of how his “leadership” will likely shift attention away from what actually helps children like ours.
Researchers believe rising autism spectrum disorder (ASD) diagnoses may be due to a combination of factors: broader definition of the spectrum, increasing parental age, greater awareness, and improved access to diagnostic testing. With more children needing supports than ever before, holding the ground on autism research and how to care for individuals with this condition is not sufficient. We must make progress. Going backwards will mean months and years of missed therapy and, ultimately, unmet potential and a greater burden on our healthcare system.
Sen. Bill Cassidy from Louisiana, a physician turned lawmaker, was one of 14 votes on the Senate Finance Committee to advance Kennedy’s nomination to the full chamber. Cassidy claims he will keep close tabs on RFK and that he will “carefully watch for any effort to wrongfully sow public fear about vaccines between confusing references of coincidence and anecdote.”
That might sound reassuring to some, but the damage Kennedy could do in just a brief period of time is significant. Witness the breakneck speed with which the current administration has tried to freeze critical funding for scientific research and social services. Any future pushback against Secretary Kennedy from the president’s allies in Congress is highly unlikely and, more importantly, too little too late.
Kennedy’s confirmation alone will further erode public trust in essential immunization programs. This puts all children at risk, including those with autism, who may have complex medical needs and who often rely on robust public health policies to ensure access to medical care and community support.
For the 250,000 individuals and their family members in Massachusetts impacted by autism and intellectual disabilities, Kennedy’s ascension to the top health post is a clear call to action. We must remind lawmakers that the supports and services our loved ones depend on are a vital lifeline. So many other issues will take priority if we don’t keep our stories at the forefront.
Instead of peddling myths, our health leaders should focus on real, evidence-backed ways to support children with autism: expanding early intervention programs, improving special education services, and ensuring access to therapies like ABA.
A secretary of HHS should be committed to science, not discredited conspiracy theories. Our son — along with all the country’s sons and daughters — deserves leadership based on facts, not fear.
T.J. Winick is a board member at the Northeast Arc, published author, and principal at Essex Strategies.
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