I’m a writer, a podcaster, and a mother of three—Milly, my 10-year-old daughter with severe non-speaking autism; Mack, my 7-year-old son, also non-speaking and autistic; and my oldest, a neurotypical tween currently testing every known boundary. I write from the war zone of the mind—where vigilance is constant, where communication is not a given, and where even the simplest connection can be hard-won.
This is a life shaped by oral and motor planning disorders—where the ability to speak is not the same as the ability to understand, and where every expressive moment is an act of profound effort.
This is survival, storytelling, and soul work—live and unfiltered.
I created Inchstones because I couldn’t find a space that told the truth about this kind of life—and still wanted to grow. Why “Inchstones”? Because milestones aren’t the only thing that matters. Sometimes the smallest shifts—the quiet, hard-won wins—mean the most.
Lately, I’ve found myself at the intersection of science, tribalism, and silence—and I won’t lie, it’s brutal here.
Recently, RFK Jr.’s comments about “curing” autism sparked widespread backlash. As a mother to two children with severe, non-speaking autism, I understand why so many were hurt by his words. They were crude, reductionist, and painfully out of touch. And yet—I’m not here to kill the messenger. He should have clarified what he meant. Because when you speak about autism without acknowledging its full range, especially the realities of severe disability, you risk dehumanizing the very people you claim to want to help.
In the uproar following RFK Jr.’s comments, I was reminded that curiosity itself has become dangerous. Not because of what it reveals, but because of who dares to ask.
Let me be clear:
I am pro-vaccine.
I believe in science.
I vaccinate my children.
I trust data and I reject conspiracies.
And still—I refuse to accept a culture that punishes families like mine for wanting better answers.
RFK’s words were messy, imperfect, and deeply flawed. But where he failed most wasn’t in asking hard questions—it was in failing to name what kind of autism he was referencing. Severe, non-speaking autism with profound sensory, motor, and safety challenges is not the same thing as quirky coding brilliance. And conflating the two helps no one.
Where many of us draw the line is when the conversation becomes politicized or framed as “fixing” our children—when the language of “cure” erases the humanity they already embody. My children are not broken. But the systems around them—the silence, the inaccessibility, the lack of curiosity—are.
I am absolutely open to exploring biomedical, genetic, and environmental research. I want to understand methylation, mitochondria, motor planning, and neurological development. I want evidence, not ideology. But I also know this: my children don’t need to be “less autistic” to be more accepted.
What we’re asking for is nuance. We want scientific rigor and honest exploration—without silencing or dismissing the lived authority of families like mine.
Because here’s the truth:
The people quickest to condemn these conversations often have no skin in the game.
They are professionals, influencers, or activists more loyal to ideology than lived reality.
They defend orthodoxy over observation.
And when you punish people for asking “Why isn’t this getting better?”—you’re not doing science. You’re doing religion.
I’m not here to defend RFK. I’m here to defend the right to dissent—especially from within a political tribe that increasingly demands silence from its members.
Silence won’t get my children the therapies they need.
Silence won’t reduce the waitlists.
Silence won’t unlock their voices.
Silence won’t keep them safe.
Influencers who speak broadly about neurodiversity without acknowledging severe disability don’t represent me. That’s why I raise my voice. My children are not abstractions. They are my whole world—and I will never stop advocating for both the science and the love they deserve.
Milly, my almost ten-year-old, is joy personified. Every night, we lie cheek to cheek singing Beatles songs, Raffi, Disney melodies, and the Music Together classics. It’s not therapy. It’s not behavioral training. It’s belonging. It’s sacred.
Milly is sharp, hilarious, and playful. Through her AAC device, she once labeled her face with color combinations like “purple mouth” and “blue eyebrows”—giggling about it for months. She doesn’t just communicate. She invents.
Mack, my seven-year-old, brings a different kind of poetry. He babbles in musical patterns while flipping through his Daniel Tiger storybook—his own form of immersive language. He feels deeply. When Daniel’s friend gets hurt, Mack’s lip trembles. His tears are real. His empathy isn’t muted—it’s magnified.
But it’s not always safe. Mack is a runner. He’s eloped before. I’ve called 911. We’ve chased after elopements. We’ve sat in IEP meetings and ER waiting rooms. We’ve lived the kind of fear that tattoos itself onto your nervous system. I’ve sprinted across unfamiliar terrain, my body fueled by a mother’s panic—because my son vanished without knowing he was in danger. That fear lives in my nervous system. And it always will.
This isn’t dramatization. This is daily life.
My kids feel everything.
They are everything.
Our life is not a soundbite.
It is not sanitized.
It is sacred—and it deserves to be told in full.
So if you’re angry, good. If you’re uncomfortable, sit with it. But if you’re ready to fight for clarity over comfort—you’re in the right place.
Because curiosity is not the enemy.
Silence is.
Sarah Kernion is a New Jersey-based writer, podcaster, and the founder of Inchstones by Saturday’s Story, a storytelling platform that gives voice to the unfiltered realities of parenting children with severe, non-speaking autism. She is a mother of three and an advocate for nuance, science, and truth in autism discourse. She is the host of Inchstones by Saturday’s Story Podcast and can be found on Instagram @saturdaysstory. You can also follow her work at saturdaysstory.com and Inchst
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