Let me tell you what I’ve been doing for the past few months:
Making sure the word AUTISM is clearly, unmistakably, unavoidably plastered across every piece of paperwork related to Cole. Medical records. School forms. Psychological evaluations. If there’s a box for diagnosis, I didn’t just check it, I practically lit it up with fireworks.
Why? Because I was applying for OPWDD – the Office for People With Developmental Disabilities. It’s a system in New York that provides services and supports to people with disabilities and to even get in the door, you need documentation. So. Much Documentation. You have to prove over and over that your child qualifies. That their struggles are real. That they’re “disabled enough.”
So I did the thing. I fought for the diagnosis. I gathered the reports. I made it loud and clear: My son is autistic.
I did this because he needs help. Because he deserves support. Because I’ve spent years watching him struggle in environments that weren’t built for his brain, and OPWDD could open the door to things that would make his life better: housing support, job training, respite services, long-term planning.
But now? I feel sick to my stomach.
Because RFK has proposed an autism registry – a government-run database of autistic people. Supposedly to “help” them. (You know, the way lists identifying and tracking marginalized groups always turn out great.)
And suddenly, all that documentation I worked so hard to get? All that proof I handed over just to try to get the bare minimum of support? Which I haven’t even GOTTEN yet?!
Now it feels like a spotlight. Like I helped build the very list that could someday be used against my son.
And I am terrified.
Cole is not a problem to be filed. He’s not a government data point. He’s a teenager with a high IQ and a soft heart. A boy with a service dog, a messy room, and a deep sensitivity to injustice. A kid who gets overwhelmed in loud rooms and who also wants to save the rainforest and tell you all about world history while eating mac and cheese.
He’s autistic. And I’m proud of him.
But I’ve read the history books. I know what happens when governments start keeping lists. And don’t tell me “it’s just for research”—because I’ve seen too many “justs” turn into real harm.
I don’t want to be afraid of advocating for my kid. I don’t want to regret doing everything I could to get him support.
But here I am. Sick to my stomach. And more determined than ever not to let this slide under the radar.
If you’re angry too, if this feels wrong in your bones, please say something.
Call your representatives. Today.
You can find their contact information at https://www.house.gov/representatives/find-your-representative.
And if you don’t know what to say?
Here’s a script you can use:
Hi, my name is [Your Name], and I’m a constituent from [Your City or Zip Code].
I’m calling to express deep concern about recent proposals from RFK suggesting a national registry of autistic people.
This idea is dangerous, invasive, and sets a terrifying precedent. We’ve seen what happens when governments start tracking marginalized populations—and autistic people, especially children, deserve support, not surveillance.
I urge you to speak out against this proposal and to protect the privacy and dignity of disabled people.
Thank you for your time.
