The blog you’ve been asking for. The one about labels.
So. You’ve been asking. For a while now. The question of “are you ND?” and “how do you do this work without a diagnosis?”. So I finally decided to answer.
Here we are.
Not the “I might be a little bit autistic” confession piece. Not the “I’m just a humble ally please don’t yell at me” apology. Just a proper sit down about what it’s like to do this work from where I’m actually standing (or in my case 99% of the time…..sitting). Which is, full disclosure, the messy middle.
“You must be somewhere on the spectrum”
I get this one a hell of a lot.
Sometimes it’s a DM. Sometimes it’s a comment. Sometimes it’s a client saying it warmly, like a recognition. Sometimes it’s a stranger saying it like a diagnosis they’re trying to hand me at the supermarket.
The thing is, I don’t know. Genuinely. Some days the way my brain works feels deeply familiar to the way my clients describe theirs. Some days it doesn’t. I am the world’s least settled question mark on this.
What I do know is the comment lands differently depending on who’s saying it. Said with affection, by someone in the community, it feels like being handed a soft “we see you” that I don’t quite know what to do with. Said as a deflection, by someone trying to undermine the work, it feels like a poke with a stick.
I receive both. I am a question mark with thank you cards and bruises.
Why I haven’t chased a label
People ask why I haven’t just gone and got a diagnosis.
Few reasons. None of them tidy.
Part of it is that I haven’t needed the label to understand myself, and I haven’t needed it to do the work I do. Part of it is that going through the system to be told who you are sounds bloody exhausting. NHS waiting lists are what they are. Private assessment costs what it costs.
The most honest part is this. I’m not sure I need to find out in a clinic. If I am, I am. If I’m not, I’m not. Either way, my brain is going to keep being my brain on Monday morning.
That’s me. That’s not a position on whether you should pursue diagnosis. People I love have, and the label cracked something open for them they desperately needed. Others have chosen not to, and that’s also right. Both are valid. Neither is the gold standard for the rest of us.
What it’s like to work here without the badge
Strange, mostly. Sometimes brilliant. Sometimes uncomfortable. Always a thing I’m thinking about.
I work in ND support because I understand burnout from the inside. Because my own brain has its quirks. Because I’ve spent a working life sat next to people who were drowning in environments that weren’t built for them, and I’ve watched what proper support actually does.
What I’m not in this for: to be a spokesperson. To tell anyone what their experience is. To take up a chair that wasn’t built for me.
The line I try to walk is this. I don’t speak for. I work with. I support, I listen, I show up, I keep the calendar running and the inbox calm. I let my clients be the experts on themselves. I don’t try to be the expert on them.
The imposter syndrome bit
Caring deeply about a community you’re not technically part of comes with a particular flavour of self doubt.
Am I allowed? Am I helping? Am I helping enough? Am I just helping enough to make myself feel like a good person? Am I getting it right? Am I getting it wrong in a way nobody’s told me yet?
I hold all of those questions on a loop. I think anyone doing this work for real does. 💖
What I’ve landed on, for now: the questioning is the point. The day I stop asking those questions is the day I should worry. The people who do this work badly are the ones who never wondered if they were doing it badly.
So I’ll keep wondering. Out loud. Where you can see. 🦄
Diagnosis culture, the careful version
There’s pressure in some online spaces to have a label before you’re allowed to speak.
I get the instinct. It comes from decades of outsiders parroting words that aren’t theirs and getting it horribly wrong. That instinct exists for good reason and I respect it.
But here’s the bit I want to say carefully.
Nobody mentions, in the “no label, no opinion” arguments, what diagnosis actually costs. It costs money. It costs time. It costs the energy of explaining yourself to a stranger with a notepad and a discerning look. For women, for people of colour, for working class people, for people who learned to mask very young, the system was never set up to recognise them on the first try. Or the second. Or sometimes at all.
If we make formal diagnosis the only ticket into the conversation, we shut out a lot of the people the conversation is supposed to be for. 🌈
That doesn’t mean labels don’t matter. They matter enormously. They unlock support, they validate experience, they hand people language for things they’ve felt their whole lives. Labels are precious. Labels are hard won.
It just means that, to me, “no label, no opinion” is a rule that ends up hurting the very people it’s meant to protect.
So where does that leave me?
In the messy middle. Where most of us actually live.
I don’t claim a label I haven’t been given. I don’t pretend I don’t have my own brain to navigate. I don’t speak for anyone. I do show up. I do the work. I keep learning. I get told when I get it wrong. I update. I keep going.
And I love this community fiercely. Whether anyone hands me a badge for it or not.
If you’ve been on the receiving end of “you must be on the spectrum” comments and you don’t know what to do with them either, we see you. If you’re undiagnosed and unsure and tired of being asked, we see you. If you’ve got a diagnosis and you’ve fought hard for it and you’re protective of it, we see you too.
We’re all just doing our best with the brains we’ve got.🦄
