The agency of knowing

Thoughts on autistic being, nine years on

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It was my 47th birthday on Wednesday. This year - and I’m not sure why - I keep looping back to my 38th birthday, when I set out on one the first of the South West Coast Path walks I charted in The Electricity of Every Living Thing. In my mind’s eye, I am setting off in warm sun from Foreland Point in North Devon. The sea is turquoise-blue, speckled with the shadows of clouds. Autumn is in the air, and there are blackberries in the hedgerows. All's right with the world. 

Illustration by Paper Trident

Why do I keep thinking about that day? Perhaps I’m craving a long walk again, although I’m not sure my arthritic hip could take it. But I think it’s more about what that day represents to me, as a moment on the cusp of change. A couple of months later, I’d experience the sudden and startling revelation that I’m autistic, and my whole life, my whole self-perception, would shift on its axis. That birthday walk is the last clear and placeable memory I have before that time. 

Those first few years were so fragile, so uncertain. When I wrote Electricity, there were few sources to draw on, particularly about full-grown autistic women. I cobbled so much together from sources on the internet that no longer exist, and everything felt improvised, unsteady, unreliable. Now, not so long after, a lot has changed, but a lot has also stayed the same. Many more adults are realising they’re autistic, but there’s still little to catch them once they know. We are still groping our way to understand what we actually are. 

The cycle that began shortly after that birthday walk (or perhaps before it  - after all, why was I walking in the first place?) has now come to a close, and a new one is opening up for me. My needs then are not the same as my needs now, and the constant process of adjustment has surprised me. I thought, at that moment of identification, that I would choose a set of adaptations once and for all, and stick to them. But as time goes on, I realise that I need to be able to grow within this identity. That’s what proves that it’s the right one for me: it’s elastic; it doesn’t fall apart when the next crisis comes along. It carries on making sense of my humanity.

When I set out on that walk, I was still doing far too many things in general, and many of those things left me feeling upset and overwhelmed. I was constantly exhausted, but also deeply delusional. I would come home from each noisy social event sincerely believing that it was that specific noisy social event that had upset me. I never saw that link between all the noisy social events I was dragging myself through. Once I did, I started turning them down. 

I cut a lot of other things out of my life too: social hugging, phone calls, dinners in restaurants with loud music, nights out with big groups of people I don’t know. I used to have to drink heavily to get through those times, and that became a useful cue. If I couldn’t do it sober, I took that as a sign that I probably shouldn’t do it at all. I now find that not drinking at borderline events means that I leave early, before it all gets too much. It’s far, far better than trying to numb my senses with cheap wine, and wondering afterwards if I embarrassed myself. 

So much has changed about the way I run my life since then. I’ve stopped fantasising that I might one day be the perfect full-time employee, and learned to feel satisfied working for myself. I now book decompression gaps into my calendar, and keep two clear days a week when I can just be quiet. I no longer force myself to wear uncomfortable clothes because I like how they look, or to push through tiredness because everyone else seems to be able to cope with it. If I find myself in a noisy environment, I move, or do something to defend against it. I take breaks throughout my day, and make sure I get time outdoors, where I’m soothed by the fresh air and natural soundscape. I don’t skip these things. I don’t talk myself out of knowing their importance. I keep doing them, even though they often feel small, fussy, and pointless, because I know they work. 

That’s what nine years of experience brings: a certain, simple faith in what you know. I now see that I entered my forties in a state of sensory trauma, derived from years of overriding my body’s distress signals. I used to think that this was trivial, but I now realise how fundamental it has been to my lived experience. I grew up believing that my body was lying, that I couldn’t possibly be feeling what I was feeling, because everyone told me it was ridiculous. I learned to shut down my senses because I had to believe that they were not true guides. 

That harmed me. I’ve been trying to undo that harm, to teach my body that it can trust me again to make wise, kind decisions on its behalf. It’s been a slow process. I still struggle to notice my own discomfort, or pain, or distress. They only come at me later, when I’m alone, and I can finally perceive what I have pushed through. At least this is progress. At least I no longer plaster another layer of delusion on top of that, and tell myself that I actually enjoyed it in the first place. 

I’m learning to inhabit my body again, and that is painstaking work. I inch back into it, heartbeat by heartbeat, nerve by nerve. I am teaching myself what it feels like not to startle, not to harden. I am learning to be a soft, trusting creature, the creature I deserve to be.

To get here - to be this work in progress - I first had to shut everything down, to fall quiet, to disappear. Yet now, after nearly a decade, I am wanting some things that I never expected to want. I’ve started to talk to strangers, to pick up the phone instead of starting long email chains. I’ve started to hug my friends. I am wondering if, one day, I might go out dancing again, because I feel sure that I could manage it now, if I made enough space around it. 

That’s what I’ve been doing: making space, creating a cushion of air around myself, cutting out the noise so I can think straight. I feel safe, maybe for the first time in my life. I feel like I understand. It’s allowed me to feel desire again, to know where my joy resides and to reach towards it. Finally, there is space for play. 

My entire nervous system was on high alert, and now it is calmed - or rather, I want to say that I have calmed it, because it has been long, devoted work. I used to try to control my body, to force it into shapes that made it scream. Now I have the agency of knowing, the sense that I can make choices, that I can reach towards the parts of life that feel good. That, in turn, has changed what I want to say about being autistic, and what it means.  I used to want to only pass on the permission to stop and draw back; but now, a few years on, I want to say that there is a time after that too, a time of regrowth, of resurgence. That is the full cycle of healing we deserve.

Nine years, and counting. I wonder what the next decade will bring.