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. 💅
2 Comments
Frank Sterle Jr.
2026-05-19 at 9:37 AMMy autism spectrum disorder is an obvious condition with which I greatly struggle(d) while unaware until I was a half-century old that its component dysfunctions had formal names. Then again, had I been aware back in the 1970s and ’80s I likely would’ve kept it a secret nonetheless, especially at school, lest the A-word [autism] gets immediately followed by the F-word [freak].
From my recollection and understanding: while children with ‘low-functioning’ autism spectrum disorder seem to be more recognizable thus treated in school systems, high-er (as opposed to high) functioning ASD students — who tend to not exhibit the more overt, debilitating symptoms of autism — are more likely to basically be left to fend for themselves, except if their parents can finance specialized education.
If it is feasible, parents should seriously consider not enrolling their high-er functioning ASD child in regular, ‘neurotypical’ grade school. The combination of my CPTSD and undiagnosed autism spectrum disorder was often mistaken for ADHD during grade school, for which I was shamed and scolded.
As a boy with an undiagnosed ASD, my public-school Grade 2 teacher was the first and most formidably abusive authority figure with whom I was terrifyingly trapped. Though there were other terrible teachers, for me she was uniquely traumatizing, especially when she wore her large, dark sunglasses when dealing with me.
Rather than tell anyone about my ordeal with her and consciously feel victimized, I instead felt some misplaced shame: I was a ‘difficult’ boy, therefore she likely perceived me as somehow ‘deserving it’. But not being mentally, let alone physically, abused within or by an educational system is definitely a moral right; I was simply unable to see this.
Perhaps schoolteachers should receive training in high-er functioning ASD, especially if the rate of autism diagnoses is increasing. There could also be an inclusion in standard high school curriculum of child-development science that would also teach students about the often-debilitating condition.
Neurodiversity lessons, while not overly complicated or extensive, might help reduce the incidence of chronic bullying against such vulnerable students. It would explain to students how, among other aspects of the condition, people with high-er functioning ASD are often deemed willfully ‘difficult’ and socially incongruent, when in fact such behavior is really not a ‘choice’.
It would also elucidate how “camouflaging” or “masking,” terms used to describe higher-functioning ASD people pretending to naturally fit into a socially ‘normal’ environment, causes their already high anxiety and depression levels to further increase. And that this exacerbation is reflected in the disproportionately elevated rate of suicide among them.
As a moral rule, a mentally as well as a physically sound future should be EVERY child’s foremost fundamental right — along with air, water, food, and shelter — especially considering the very troubled world into which they never asked to enter.
Frank Sterle Jr.
2026-05-19 at 9:39 AMMy own autism spectrum disorder is an obvious condition with which I greatly struggle(d) while unaware until I was a half-century old that its component dysfunctions had formal names. Then again, had I been aware back in the 1970s and ’80s I likely would’ve kept it a secret nonetheless, especially at school, lest the A-word [autism] gets immediately followed by the F-word [freak].
.
From my recollection and understanding: while children with ‘low-functioning’ autism spectrum disorder seem to be more recognizable thus treated in school systems, high-er (as opposed to high) functioning ASD students — who tend to not exhibit the more overt, debilitating symptoms of autism — are more likely to basically be left to fend for themselves, except if their parents can finance specialized education.
.
If it is feasible, parents should seriously consider not enrolling their high-er functioning ASD child in regular, ‘neurotypical’ grade school. The combination of my CPTSD and undiagnosed autism spectrum disorder was often mistaken for ADHD during grade school, for which I was shamed and scolded.
.
As a boy with an undiagnosed ASD, my public-school Grade 2 teacher was the first and most formidably abusive authority figure with whom I was terrifyingly trapped. Though there were other terrible teachers, for me she was uniquely traumatizing, especially when she wore her large, dark sunglasses when dealing with me.
.
Rather than tell anyone about my ordeal with her and consciously feel victimized, I instead felt some misplaced shame: I was a ‘difficult’ boy, therefore she likely perceived me as somehow ‘deserving it’. But not being mentally, let alone physically, abused within or by an educational system is definitely a moral right; I was simply unable to see this.
.
Perhaps schoolteachers should receive training in high-er functioning ASD, especially if the rate of autism diagnoses is increasing. There could also be an inclusion in standard high school curriculum of child-development science that would also teach students about the often-debilitating condition.
.
Neurodiversity lessons, while not overly complicated or extensive, might help reduce the incidence of chronic bullying against such vulnerable students. It would explain to students how, among other aspects of the condition, people with high-er functioning ASD are often deemed willfully ‘difficult’ and socially incongruent, when in fact such behavior is really not a ‘choice’.
.
It would also elucidate how “camouflaging” or “masking,” terms used to describe higher-functioning ASD people pretending to naturally fit into a socially ‘normal’ environment, causes their already high anxiety and depression levels to further increase. And that this exacerbation is reflected in the disproportionately elevated rate of suicide among them.
.
As a moral rule, a mentally as well as a physically sound future should be EVERY child’s foremost fundamental right — along with air, water, food, and shelter — especially considering the very troubled world into which they never asked to enter.