Neurodivergent Burnout and Masking: A Late Diagnosis Story

Photo by Wilhelm Gunkel on Unsplash

I've been trying to write this post for a while now, and every time I sit down to start it I find myself circling round several different memories that all seem connected even though on paper they look like they belong to completely different parts of my life.

The earliest one goes back to childhood, and it's less a single memory than a general feeling that ran through most of the rooms I was in as a kid, which is the sense of being an outsider even in spaces where I was supposedly one of the group, tucked into the corner of the room while everyone else seemed to know how to fold themselves into the conversation, watching more than joining in, an observer of my own childhood more than a participant in it.

The sheet of glass

I still don't have a better way to describe what a lot of everyday interaction feels like than the image of a sheet of glass, and I know that sounds strange written down, but it's the closest thing I've found to the truth of it.

Even now, walking down the street and saying hello to someone, there's a pane between us, and I'm speaking to people through it. Every now and again I catch my own reflection in that glass, and suddenly I'm not talking to the person in front of me any more, I'm watching myself talk to them, wondering how what I'm saying is landing, wondering how I look while I'm saying it, and the moment I notice that reflection the whole exchange stops being simple.

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The fear before the diagnosis

Somewhere in amongst all of this sits the question of diagnosis, and I want to be honest that this is one of the harder threads to write about because it hasn't resolved into anything neat. There have been points where I've come close to starting that process and then found reasons to stop: told myself the waiting list was too long, told myself I didn't want a label, told myself that by now I'd built enough workarounds that a diagnosis wouldn't change very much day to day.

I think some of that was true. And I think some of it was fear, plain and simple, fear of what it would mean to have something confirmed in writing that I'd suspected about myself for years, and fear of the process itself too, of sitting across from someone whose job it is to ask questions about the parts of yourself you've spent a lifetime learning to hide well enough that even you sometimes forget they're there. Rightly or wrongly, I think that fear is more common among late-diagnosed adults than most of us let on.

The mask slipping

The experience that changed how I think about all of this happened at a previous job, and for a long time I filed it away as one bad day, an embarrassing lapse in professionalism I told myself I needed to make sure never happened again.

I had been masking well in that role for a long time, doing the thing so many neurodivergent people learn to do without ever being taught it directly, which is to build a version of yourself that photographs well in a meeting, and I kept that version running for years before it started to slip.

When it finally did slip, it didn't happen gently. I was already burnt out, though I wouldn't have used that word for it at the time, and then I was handed another difficult situation on top of everything else, and something in me that had been keeping the whole structure upright simply gave out.

I lost the ability to regulate what I was feeling in the moment, and what came out instead was distress: visible, unmistakable distress.

I remember a colleague's face doing that thing where concern and judgement arrive at almost exactly the same time, right before they said something like, "I think you need to take a minute and compose yourself," which is a very polite way of telling someone that what they're watching isn't professional.

What was actually happening

Looking back at it now, years into working in this space, I don't think what that colleague was watching was a lapse in professionalism at all. I think they were watching a nervous system that had been under enormous, invisible weight for a very long time finally run out of what it needed to keep functioning.

If any of us had been taught to recognise dysregulation for what it is, that whole exchange might have gone completely differently.

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Questions I'm still sitting with

I still don't have a tidy answer for what this should mean for how workplaces respond to distress, and I'm not sure I'm looking for one, but a few questions keep coming back to me.

• What would it take for a manager to read dysregulation as a signal worth paying attention to, before it turns into a different conversation?
• What would it take for someone to start a diagnosis process without a small measure of dread already attached to it?
• What would it take for a childhood spent watching from the corner of the room to be recognised early enough that nobody has to wait until their thirties, or forties, or later, to understand why they always felt just slightly outside of everyone else?

I think these are questions worth sitting with, even when they're uncomfortable.