An Open Letter to the Secretary of Health and Human Services

Dear Secretary Robert F. Kennedy Jr.,

As a neurodivergent adult, disability advocate, and proud member of The Arc of Northern Virginia community, I am writing in response to your April 16th press conference and the remarks you made about the current landscape of Autism Spectrum Disorder (ASD) as reported by the Centers for Disease Control and Prevention (CDC).

While I appreciate your commitment to bringing national attention to the needs of individuals with developmental disabilities, I feel compelled to speak directly to some of the language and assumptions shared—language that, for many of us, echoed decades of misunderstanding, stigma, and exclusion.

You spoke of children who “regressed into autism” and claimed that many would “never pay taxes, never hold a job, never write a poem, never go out on a date.” These statements reflect a harmful, deficit-based narrative that continues to marginalize neurodivergent people by defining our worth based on outdated metrics of productivity and conformity.

I am here to offer a different story. One rooted in truth, lived experience, and the unwavering belief that every person has value, no matter how they communicate, move through the world, or make sense of it.

As a neurodivergent person, I have spent much of my life confronting systems that were not designed for minds like mine. Throughout my education, I encountered barriers not because I was incapable but because the material was delivered in a way that failed to meet diverse learners. I was told I didn’t “fit the model” or that I “wasn’t what they were looking for”—in school, in the workplace, and in systems of care.

All the while, I’ve also known what it’s like to be seen as a statistic, reduced to a number or stereotype based on diagnosis or disability. Yet, there have been people along the way who chose to look deeper. People who sat with me, listened to me, and saw me for whom I truly am. Those moments, when someone took the time to understand me as a whole person, deepened my connection to humanity. They reminded me that while stigma is real, compassion is powerful. Not every interaction comes with judgment. Some come with empathy, and that matters.

But I have worked, paid my taxes, filed my documentation, and fulfilled every obligation asked of me—and then some. I’ve done this while also advocating for others, mentoring peers, and building coalitions to expand access to services. And despite the difficulties, my neurodivergence did not break my family; it strengthened our bonds. It taught us how to love and communicate differently—and with greater compassion.

What is often framed as “regression” is more accurately a lack of appropriate support, or the manifestation of stress and trauma in a world that too often demands neurotypical performance at the cost of authenticity and well-being. This country’s rising autism prevalence is not a public health crisis—it is evidence that we are finally recognizing people who were always here, but long misunderstood or ignored.

This moment also revealed how far we still have to go. The language used in the press conference unintentionally reinforced damaging assumptions that date as far back as the 1930s—ideas that have historically led to exclusion, institutionalization, and erasure. But times have changed. Today, the increase in diagnosis is not evidence of a crisis—it’s evidence of better tools, growing awareness, and a more inclusive society. Many people now have the language and support to recognize the signs of neurodivergence—not because something is wrong, but because we are learning how to support different ways of being.

We don’t need pity. We need partnership.

That is why I’m calling on your office to take real, meaningful action—actions that align with The Arc’s mission to ensure the full inclusion and participation of people with intellectual and developmental disabilities in all aspects of society. I respectfully offer these recommendations:

Recommendations for a More Inclusive and Equitable Path Forward

1. Hold Providers Accountable for Denials of Care

Implement clear oversight and consequences for healthcare providers and insurers who deny services critical to people with developmental disabilities, especially in underserved communities.

2. Expand Access to Early Intervention and Lifespan Supports

Fund and ensure equitable access to early childhood services, transition supports, and programs that assist individuals with IDD throughout their lives—from education to employment to independent living.

3. Center Neurodivergent Voices in Public Messaging

Collaborate with self-advocates and organizations like The Arc to ensure that public communications reflect dignity, possibility, and the strengths of neurodivergent individuals.

4. Reform Educational Systems for True Inclusion

Promote universal design for learning, differentiated instruction, and inclusive classrooms that support students across the spectrum of learning needs.

5. Invest in Mental Health and Community-Based Services

Address the intersection of disability and mental health by expanding culturally competent, trauma-informed, and community-based supports that meet individuals where they are.

Secretary Kennedy Jr., I write this letter not to criticize but to contribute. The path to better policy is paved with lived experience. And people like me—and so many others across the country—have the knowledge, the passion, and the courage to help lead the way.

Let’s move beyond outdated narratives and toward a future where all people with developmental disabilities are valued, supported, and fully included in every aspect of life.

We are not just data points in a report. We are people with stories, relationships, and the capacity to contribute in ways that can’t be measured by outdated assumptions.

Thank you for your time and for your willingness to listen.

With respect,

Ian Allan

Disability Self-Advocate

The Arc of Northern Virginia