I wish I were a better writer, able to fully capture the deep sorrow and dismay I feel over the current administration and the recent remarks of RFK, Jr. regarding the creation of an autism registry. For decades, I have worked tirelessly, advocating for greater access to diagnosticians in Washington State to ensure early and accurate diagnosis for children. To now be faced with the threat of an autism registry fills my heart with fear and a heavy sense of foreboding.
This proposal echoes a dark chapter of history — a chilling parallel to what happened to children with disabilities in Nazi Germany. German officials mandated the registration of all newborn babies and children under three years old who displayed signs of severe mental or physical disabilities. Midwives were enlisted and incentivized, paid a small sum for each infant they reported. Parents were pressured to surrender their children to state-run residential clinics, under the guise of medical care. In truth, many of these children were secretly murdered through starvation or lethal injection.
As the German economy shifted toward supporting the war effort, people with disabilities came to be seen not only as a genetic burden but as a financial one. Are we now, in 2025, witnessing the early steps down this same terrifying path? Is the proposed registry a prelude to framing children with autism as a drain on the Educational and Medicaid systems, something to be “remedied” rather than embraced?
Raising a child with autism to adulthood is no easy task, but it offers immense personal and societal value. It fosters resilience in both the individual and the family. It promotes a deeper, richer understanding of neurodiversity, strengthens communities, and teaches lessons of compassion, patience, and humanity. This journey is not simply about survival — it is about thriving, contributing, and transforming the world around us.
Over the past 25 years, I have witnessed a powerful movement gaining momentum — a shift towards recognizing and celebrating neurodiversity. If I could give this movement a name, it would be Embracing Neurodiversity. Its goal is to uplift the strengths and unique perspectives of individuals on the autism spectrum and those with intellectual and developmental disabilities (IDD). It is about advocacy, inclusion, and the dismantling of outdated stereotypes. Through awareness and understanding, we can create a more inclusive society — one where individuals with autism and IDD are valued, not marginalized.
My foundation for this belief is deeply rooted in my faith. As a Roman Catholic educated in Catholic schools through high school, I was taught that every human life has inherent dignity. Disabilities are not a flaw to be fixed but a natural and beautiful part of the human experience. Every individual is made in God’s image, deserving of respect, love, and full participation in society.
My personal journey began 41 years ago with the birth of my son, Michael. I still remember the excitement of bringing him home, greeted joyfully by his big sister Mollie, who eagerly exclaimed, “I holdy baby?” From the start, Mollie adored Michael — playing with him, helping me care for him, showing a love that knew no limits.
Yet as time went on, I began noticing differences in Michael’s development. While his sister hit milestones on time, Michael lagged behind. I won’t recount every detail, but each passing day brought new worries. My life became a revolving door of doctors’ appointments, clinics, assessments, special education preschools, individualized education programs (IEPs), and later, adult services and guardianship planning. I have been a legislative advocate for twenty years, helping to create residential support options like the “Companion Home” model for adults with autism — a model that has proven successful, with many individuals, including Michael, still happily with their original providers after 25 years.
Fast forward to today, and my concern for Michael’s health and future is greater than ever. All of Michael’s services and supports — his very quality of life — hinge on Medicaid. These essential services are now under threat from policymakers who see cutting Medicaid as an easy way to balance budgets. The Trump Administration’s continued targeting of Medicaid terrifies me, knowing that with a stroke of a pen, so much of what we fought for could be erased.
It has become a grim ritual: every legislative session brings new battles to protect what has been hard-won. The fear that looms now is not just the usual anxiety over budget cuts — it’s the chilling realization that all that we fought for could be stripped away by a single executive action. The anguish, stress, and fear have been constant companions during these past 100 days of this administration.
I tell myself to avoid the news — to protect my heart — but the morbid curiosity pulls me back, needing to know what fresh challenges or threats may be unfolding.
Despite it all, I continue to fight. For Michael. For every individual and family walking this journey. For a future where dignity, inclusion, and love guide our policies — not fear, ignorance, or cruelty.
We must continue to Embrace Neurodiversity and recognize the infinite worth of every human being. Our collective humanity depends on it.
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