The Slogan Everyone Loves
“Nothing about us without us.”
People throw that phrase around like it’s the moral high ground of autism advocacy. It sounds powerful and inclusive, right?
But here’s the problem…It only works if you’re able to speak for yourself.
Where Does That Leave My Son?
So where does that leave people like my son, Charlie?
Profoundly autistic. Non-speaking. Intellectually disabled.
He’s not going to sit on a panel.
He’s not typing threads on Instagram.
He’s not drafting op-eds about sensory overload or policy reform…
Does that mean conversations about people like him don’t get to happen? That we just… stay silent? Or do we wait around for a level of independence and communication that may never come?
Because that’s what “nothing about us without us” turns into when you apply it to profound autism:
Silence.
A Slogan Built on Privilege
It’s a slogan built on PRIVILEGE. It assumes every autistic person can self-advocate. Many can. And I’m glad they do. Their voices matter.
BUT their experience is not everyone’s experience.
Some autistic people need 24/7 care.
Some will never live alone.
Some will never use “I” statements in a caption about their diagnosis.
And yet they are the ones most at risk of being ignored when we decide only first-person voices are “valid.”
Who Gets To Advocate?
Advocacy can’t only come from autistic people themselves.
Sometimes it looks like a mom in an IEP meeting fighting for a 1:1 aide.
A dad pushing for a safer group home.
A sibling explaining, again, why their brother can’t be left unattended for thirty seconds.
That’s advocacy too.
So when people say parents and caregivers shouldn’t speak “for” their kids, I think of Charlie. If I don’t speak up for him, who will? The people calling me ableist for saying he needs lifelong care? Those who believe GPS trackers for kids who run away should be illegal?
Profound Autism Deserves A Voice
Profound autism deserves representation.
Profound autism deserves resources.
Profound autism deserves to be talked about, even when the person living it can’t sit across from you and spell out consent on AAC device.
If that offends you more than the idea of my son going through life without support, ask yourself why.
Nothing about us without us sounds good on paper.
But “nothing about us without us” excludes a third of the autistic population who are too disabled by their autism to be able to self-advocate.
You don’t get to gatekeep advocacy while the most vulnerable go invisible.
Profound autism is part of “us” too. When your slogan excludes them, it stops being a call for justice and becomes a way to shut people like my son out.
I said what I said. 💅
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