My non-speaking autistic son Stone was denied disability benefits through SSI.
Yes, you read that right.
We filed the application in April 2023. In the months that followed, they requested evaluations – a psychological review, a medical evaluation. We complied with everything. We even visited the local SSI office in person, where we were told his approval was coming soon. They said they were just waiting on one final piece of documentation from Stone’s doctor.
Then in January, we received the denial.
Despite having an official diagnosis of autism, despite living with apraxia and epilepsy, despite having seizures and requiring full-time support – the Social Security Administration has decided he’s not disabled enough.
They claim he can work.
This, from a system that has never met him. That has never tried to understand his reality. That operates on outdated criteria, harmful assumptions, and institutionalized ableism disguised as due diligence.
I had to file an appeal – something that could take months, maybe years. I submitted letters from his neurologist and occupational therapist. I explained, again, what apraxia is. I detailed his seizure activity. I laid out his need for full-time regulation support and how much of his energy is spent just trying to function.
And we still have no idea when, or if, they’ll finally acknowledge what is already so clear: Stone is disabled. And he deserves support.
But this post isn’t just about Stone.
Because here’s the truth: everyone we know has gone through this.
Denied.
Then appeal.
Even in the most obvious cases.
And people shrug. “That’s just the way it is.”
But it’s not just broken—it’s about to get worse.
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🧨 If You Voted for Trump and the GOP – Own This
Let’s be absolutely clear about what’s happening:
🔗 Just this week, House Republicans voted to advance sweeping cuts to Medicaid.
They’re calling it “fiscal responsibility.”
What it really is? A direct attack on people with disabilities.
If you voted Republican, you voted for this.
• You voted to make it even harder for kids like Stone to thrive or even survive.
• You voted for even longer waitlists.
• You voted for even more denials like this one.
• You voted for a dismal future where disabled individuals are pushed further into isolation, poverty, and burnout.
Especially if you’re a parent of an autistic child – and you still support the politicians doing this? You should be ashamed.
Because this isn’t a policy disagreement.
This is personal.
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💔 What This Really Tells Me
This tells me that my son and the millions of others like him doesn’t count.
That his seizures aren’t severe enough.
That his communication – spelled out painstakingly on a letterboard or keyboard – isn’t considered “real.”
It tells me that the labor I do as his full-time co-regulator, communication partner, scheduler, caregiver, and emotional anchor has no value in the eyes of the government.
And yet – we’re still here.
Still fighting.
Still raising our voices.
Because Stone will get what he needs.
And we will keep exposing this system until it breaks wide open.
To every other parent who’s been denied – you’re not alone.
To every lawmaker who’s perpetuating this cruelty – we see you.
And to every advocate who’s working to build something better – thank you.
Let’s keep speaking out.
Even when they try to silence us.
Especially then.
