As a social worker and the mother of a 23-year-old autistic daughter with complex medical needs, I see what happens when rhetoric collides with reality — and how families like mine are left to carry the consequences. So when President Donald Trump and Health and Human Services Secretary Robert F. Kennedy Jr. promised to soon reveal the “cause of autism,” it only underscored a contradiction that has become increasingly clear since their time in office. Their headline-grabbing pledges and proclamations come even as their administration has overseen sharp cuts to autism research and weakened the vital supports families rely on.
A few months earlier, Kennedy called autism “an individual tragedy” that “destroys families.” Some welcomed that comment as overdue recognition of autism’s challenges. But many of us found it reductive and harmful, overshadowing the strengths and contributions of our loved ones. I have felt heartbreak watching my daughter suffer through painful setbacks. Yet that is not the whole story. What troubles me most is that this rhetoric comes as long-standing commitments to disability rights and autism supports are eroding. These are realities my family and millions of others live with every day.
My daughter Danielle is autistic, minimally verbal and lives with severe Crohn’s disease. Her ability to speak shifts depending on her health and sensory environment, from full sentences on some days to silence on others. When she feels well, she types witty, insightful messages and paints vivid portraits that reveal her brilliance. She fills our home with humor and warmth.
The countless moments of creativity and connection are rewarding, but they don’t change the fact that she requires intensive supports. Danielle’s safety depends on round-the-clock supervision, a level of vigilance that underscores how fragile life can become without reliable care. Many of her challenges come from managing Crohn’s and autism, but just as many arise from navigating fragmented, underfunded services millions rely on. These are the same systems any of us could suddenly need through illness, aging or injury.
The paradox is plain: Promises of breakthroughs come alongside cuts to the very resources that could make them possible. Earlier this year, National Institutes of Health autism research funding dropped by $31 million, and a Reuters analysis found a 26% decline in the first four months of the year. Meanwhile, researchers told the health news outlet STAT that the administration’s shifting priorities have put the future of long-term, evidence-based research in jeopardy.
The disconnect extends beyond research. Even as leaders claim to champion families, Congress passed a budget cutting roughly $1 trillion from Medicaid over the next decade. Those reductions threaten the hospitals, nursing facilities and community supports that Danielle and families across the socioeconomic spectrum in Maryland and beyond depend on. Medicaid isn’t just for people with low incomes. According to the Kaiser Family Foundation, it is the primary payer of long-term services and supports, including home- and community-based care. The American Hospital Association reports that it covers about 60% of nursing home residents, underscoring its central role in financing long-term care. When underfunded, hospitals lose staff, waitlists grow and families are left managing overwhelming care demands no amount of private money can fix.
It is a misconception that this administration is the first to take autism seriously simply because their pronouncements are louder. The truth is that leadership from both parties has advanced research and disability rights for decades. The Individuals with Disabilities Education Act and the Americans with Disabilities Act enshrined civil rights protections. The Autism CARES Act, first passed in 2006 and reauthorized in 2024, has directed millions toward research and supports. These laws represent long-term bipartisan commitments essential to families nationwide and show what is at risk when attention shifts to soundbites over substance.
For families like mine in Maryland and across the country, these decisions aren’t abstract. We don’t need empty promises of imminent discoveries — we need sustained commitments to evidence-based research and the supports that make daily life possible.
Danielle has taught me more than any policy debate ever could: that connection exists even in silence, and resilience is built through both joy and challenges. But love is not a care plan, and my husband and I will not be here forever. Strong systems matter.
Linda Orleans is a social worker and disability advocate. She is the mother of a 23-year-old autistic daughter with complex medical needs. She lives in Maryland with her husband and daughter.
