Autism Doesn’t Define You?
It’s My Very Essence
There’s a tired old mantra that’s been used so frequently it might as well be stitched onto a tea towel: “Autism doesn’t define you.” If you’re autistic, you’ve heard it. Repeatedly. Endlessly. As if someone’s flicked on a motivational tape designed by people who think our primary struggle is the weight of a pesky little “label.”
On the surface, it sounds kind. Reassuring, even. The kind of thing a well-meaning relative says while patting your shoulder, the way one might comfort a child who’s lost a school competition. “You’re more than that, love.” But peel back the layers, and the milk of kindness starts to curdle. It’s a paradox wrapped in a pleasantry: a phrase that’s meant to free us from a label but instead reinforces the idea that autism is something we should want to distance ourselves from.
But here’s the thing. Autism does define us, not in the limiting, suffocating way they think, but in the way that all integral parts of identity do. Like gender, sexuality, or culture, it isn’t an accessory we can put down when it’s inconvenient. It shapes how we experience the world, how we process information, how we move, think, and feel. And yet, society insists on treating it like an unfortunate footnote, a shadowy inconvenience rather than a fundamental part of who we are.
When people say, “Autism doesn’t define you,” what they’re really implying is that autism is something unfortunate — something that should sit politely in the background while the “real” you takes centre stage. It suggests that being autistic is separate from being a person, as if we exist in two fractured states — Autistic but also somehow not. Present but erased. Seen but not acknowledged. We are expected to navigate a world that both refuses to accommodate us and demands that we act as if we don’t need accommodating.
But let’s be clear: it’s not autism that isolates us. Society does. The systems we are forced to engage with — education, employment, healthcare — weren’t built for us. They’ve been designed by people who view autism as a collection of deficits, something to be managed rather than understood. The real tragedy isn’t that we are autistic; it’s that the world is so catastrophically bad at dealing with the fact that we exist.
Think about the labyrinth of so-called “support” systems. We’re assessed, labelled, and told we “need help,” only to find that this help comes in the form of well-meaning but misaligned resources that barely scratch the surface of what’s actually needed. Usually designed for us rather than by us. The cycle is predictable: we’re identified, provided with meagre assistance, and then blamed when we still struggle within a framework that was never designed with us in mind. It’s a neat trick, really — gaslighting masquerading as care.
Then there are the organisations — the charities, advocacy groups, and self-proclaimed “experts” — who declare their unwavering support while reinforcing the same tired narratives. They slap inspirational slogans on social media posts and speak in the careful language of tolerance, rather than acceptance. “We live with autism.” “I wouldn’t change my child.” They think they’re helping, but the message is clear: autism is something to be endured, not embraced.
The problem isn’t just the language; it’s the way language shapes reality. When autism is consistently framed as a challenge to overcome, as a burden to manage, it filters into how we see ourselves. We internalise it. We learn to shrink, to apologise, to soften our edges so that we’re easier to digest. But when we shift the language, when we frame autism as an identity rather than a defect, we reclaim the narrative. We assert that we are whole, exactly as we are.
For real progress to happen, the focus needs to shift from “helping us fit in” to creating environments where we don’t have to contort ourselves into shapes that aren’t ours to begin with. Inclusion isn’t about tolerance; it’s about belonging. It’s about making space where autistic people don’t just survive but thrive. And that starts with rejecting the idea that autism is something separate from who we are.
So no, I won’t be swallowing the “autism doesn’t define you” line. Because it does.
Not in the way they fear, but in the way that matters. Autism isn’t a limitation; it’s an identity. It’s how we move through the world, how we connect, how we experience joy, and how we exist. The question is not who we are but who has the right to define that for us. Because the answer is simple: only we do.
Autism defines us because we are autistic. Our identity belongs to us, and it’s a vital, beautiful part of who we are — today, tomorrow, and always. It’s time the world understood that.
