#TakeTheMaskOff: authentic vulnerability

Cartoon drawing of Mama Pineapple, a white female-presenting person with chin-length red hair. She is clenching her left fist in order to make her bicep bulge. Tears are streaming down her face.

One of the things I’ve always hated about myself is how easily I burst into tears, and how often I cry.

That’s not to say I’m ashamed of it. It’s my natural reaction to surprise, bad news, overwhelm, discomfort, confusion, and a whole range of other scenarios, situations and feelings. It’s just how I am.

The reason I hate it is not that it shames me, but because it draws others’ attention to me at times when I’m feeling especially vulnerable. And my very dramatic outward displays of emotion make me vulnerable. I am left exposed, demarcated, spotlighted, in a way in which others are not.

I’ve been crying a lot over recent months. I’m cagey about talking too much about the reasons for this on this blog, because while I’m often very candid and open on here, many of those who read my words know me in person, including some people I work with.

Currently I’m contending with huge amounts of change. I’ve lurched from one period of uncertainty to another. This particular dark cloud, while it has evolved and morphed in shape and outline, has been hanging over me for well over eighteen months. Its form has been given greater definition in the past couple of months, but still that form has yet to settle into a state of finality.

I’ve had bad news delivered to me, and many people around me, in very exposing, “public” settings.

I’ve had reassuring structure and routine ripped out from under my feet. I see gaping nothingness in front of me, however much others around me try to reassure me that the unknowns will come to an end at some point.

I’m experiencing a form of bereavement – not over a lost loved one, but over the loss of a particular combination of relationships, things, environments, and a way of being that I’ve loved, and that has made me feel supported, contented and happy for a good few years, even while I’ve contended with many difficulties elsewhere in my life.

Throughout it all, I’ve been told to remain professional, and to “try to use my coping mechanisms” to manage my distress.

But I’ve been unable to prevent myself from crying.

I’ve been unable to prevent myself having meltdowns. At work. At home. In public places.

It’s all too much.

My sense of vulnerability raises my already-pretty-extreme levels of anxiety.

How do others perceive me?

Can I truly be regarded as competent? Professional? Capable? Able? Trustworthy?

***

The truth is, I can be all these things, and vulnerable. Such qualities are not mutually exclusive.

Since my diagnosis, I’ve always been open about my autism.

My reasoning is that I struggle to be quiet about aspects of truth about myself; and that I simply wouldn’t want to be around anyone who looked negatively upon me as a result of knowing that I’m autistic. It’s a part of me, and by rejecting my autism, anyone who does so rejects me.

But my emotional vulnerability is as much a part of my autism as my sensory sensitivities, my pattern-spotting abilities, my attention to detail, and the deep joy I experience when working on things that interest me.

I am not ashamed of that vulnerability, but I now feel I need to go further than such a state of neutrality; of not-negativity.

I have started to embrace it as a fundamental personal truth.

Sometimes, it means – as someone I know recently put it – that I’m “taking one for the team” in more readily displaying those feelings that others around me feel internally, but are unwilling or unable to convey to the outside world. I’m raising awareness.

My vulnerability is authentic.

My vulnerability is real.

My vulnerability is human.

And – perhaps perversely – my ability to allow myself to be vulnerable makes me strong.

Crying is cathartic. The pressure is released. This can sometimes take hours, but it does go. And when my tears have all been shed, and my wailing and sobbing has quietened, I’m exhausted, spent; but the tension is gone.

I know I’m alive, I’m here, and I can carry on.

Right now, I can’t keep up appearances. I can’t pretend I’m fine. I can’t currently wear the mask of acceptable social interaction very much of the time. I’m having to cope with too much.

And while crying can be useful, and I’ve done the Very Helpful Thing of making others aware of how serious things are, no-one should be repeatedly subjected to So Much Stuff that they dissolve in a puddle of tears on an almost daily basis. It’s tiring. It’s not a modus operandi I’m keen on.

Hence time off work, and limited time online. I’m trying to keep my life as quiet as possible at the moment. I need to rest, recover, and recuperate.

But I’m still here.

I’m authentic, I’m vulnerable, and I’m human.

#AutismAcceptance/#AutismAppreciation doodles ‘n’ scribbles, no. 18: Robots

Portrait orientation fineliner pen drawing of 28 brightly coloured robots of various sizes, shapes and types, with a range of facial expressions and poses. This is not a ‘scene’ but a series of individual images - the only background is the page on which they have been drawn.

You’d think, wouldn’t you, by now, that the stereotype of autistic people as emotionless, empathy-devoid, monotonous-voiced beings with no inner life might have been chucked out of the window forever. But it still seems to persist, even as we work to change the narrative.

I am fully human. My brain is simply a different machine from that of a neurotypical person.

I do quite like robots, though.


[Image description: Portrait orientation fineliner pen drawing of 28 brightly coloured robots of various sizes, shapes and types, with a range of facial expressions and poses. This is not a ‘scene’ but a series of individual images – the only background is the page on which they have been drawn.]

#AutismAcceptance/#AutismAppreciation doodles ‘n’ scribbles no. 3: ‘Many Guises’ quadriptych

Quadriptych cartoon portraits of Mama Pineapple, a white female-presenting person. In each, she wears a dramatically different outfit, and has hairstyles of various lengths and colours.

I’ve played around with my appearance a lot over the years. I’ve had a lot of fun with clothes, makeup, hairstyles and accessories. I used to think my changing appearance was symptomatic of not having a clue who I was, but on reflection I don’t think it was as deep as that. Part of it was the attitude of “well, everyone thinks I’m weird anyway so I might as well play up to it”. Part of it was simply about self-expression and fun. I don’t really follow fashion, but I do find it fascinating.

After a period in my early-to-mid-30s of feeling a bit drab, I’ve ramped up the self-expression once again since my autism diagnosis. Anxiety aside, I’m far happier with myself now than I’ve ever been before.


[Quadriptych featuring cartoon portraits of Mama Pineapple, a white female-presenting person. In each, she wears a different outfit, and has hairstyles of various lengths and colours. Left to right: pink-hair-grip-, plastic necklace- and vintage shirt-wearing short haired 1990s indie pop kid; punk grrrl with white shirt, grey pinafore, spikey pillarbox red hair, full eyeliner, and safety pin through one ear (c2000); somewhat more conventional look from early 2010s, with long dark hair, minimal makeup and a striped polar neck jumper; present day – mid-length red hair pinned to one side, vintage 60s black lace blouse, dramatic winged eyeliner.]

Give in to the stim.

I’ve had a lifelong relationship with stimming. And for so much of my life, I’ve tried to stop.

Why did I do that to myself?

I’m such a stimmy autistic. I’m more noticeably stimmy than many autistics I know – to the extent that other autistics comment on just how stimmy I am. I think now about how much I stim, and how obviously I stim, and I wonder at the fact I went undiagnosed for so long.

For quite literally as long as I can remember, I’ve used my teeth and jaws as a drum kit. At various points in my life, it would occur to me that this was something others didn’t do, and that, thus, it was not “normal”. But it was a discreet enough stim that did no harm to either myself or others, and so it continued.

As a preschooler, I had an old, ragged velvet curtain that lived on my bed, the hem of which was delicious, soothing, soft delight to rub against my upper lip.

As an older child, I enjoyed “crash-landing” at bedtime. I’d take a run-up, jump forward, and sharply twist round to land with a crash, on my back, on my bed. There was a glorious release in doing so. Rather than working me up into a frenzy, the combination of twirling, twisting vestibularity and proprioceptive sinking contact of body-with-bed seemed to relieve me, ground me and relax me, albeit only for a few minutes or so.

I’ve never truly been able to lie still in bed. I find it something close to torture to lie still. One of my favourite in-bed stims is to repeatedly flex one of my feet at the ankle, rubbing the foot against the sheet beneath me. Sometimes I have both feet going, and I concoct rhythmic combinations, one foot accompanying the other but each rubbing out its own distinct motif; at other times a simple back-and-forth motion will suffice.

My sensory sensitivity means that in moving my feet when they’re covered by bedlinen, I’m hyper-aware of sweat, snags, abrasions, contours and anomalies. They agitate and irritate and prevent me from powering down. I must always keep my toenails neatly trimmed. My feet must always be freshly washed before I slip under the covers.

Sometimes in bed, I rock or wiggle my hips, or contract and release my quadriceps, feeling my knee joints tense and relax as I do so. But mostly it’s the feet.

For so many years I thought something was wrong with me. I seemed unable to relax in bed without moving my feet. From so many sleep-overs, residential school trips, Girl Guide camps, and holidays with cousins, I’d observed that most other people didn’t need constantly to move their feet as they lay in bed at night. I had a strong sense that this wasn’t “normal”.

(There was also, of course, that whole thing of everyone else around me going to sleep way before I did. On some sleepovers, I literally lay awake all night. But that’s an aside.)

I tried to stop, but couldn’t.

I carried on moving my feet at night all through my teens and 20s. And I kept on trying to stop. Because it wasn’t “normal”. But trying not to move my feet in bed was torture.

It wasn’t just bedtime. I needed to stim every waking minute of the day. In classrooms, I’d swing my legs under the desk. I’d compulsively tap my foot or drum my fingers while waiting for a bus. Once I’d started learning to play the trumpet, I’d emulate the fingering in mid-air, tapping the middle three fingers of my right hand against my thumb in mimic of the notes played on the real instrument, evoking the tunes I could hear in my mind.

Around the age of 10, I discovered split ends in my hair. This ushered in two decades of calloused finger tips and tension headaches as I squinted at the hair in front of me, closely inspecting the ends, and then picking, peeling and snapping, thumbnail digging into index or middle finger as I pulled the ends of my hair to shreds.

Split-end-picking was one of my distinguishing traits as a teenager. Another bit of ammunition the other kids could use to taunt me. But focusing on the ends of my hair helped block out the rest of the world.

But it didn’t feel healthy. And neither did picking at the skin on my arms and legs, or clawing at my scalp. Neither did smacking myself in the head. And yet I did all these things.

I wanted to stop doing these things. But I just couldn’t.

Why was it that I felt such a desperate need to move all the time? Why did my body cry out, scream out, for this input?

During my teens and university years, I moshed at gigs, bounced around at indie discos, and gyrated at clubs. I flailed and jerked about on stage in bands. In my mid to late 20s, I exercised to extremes; hours and hours of running, spin classes and free weights every week. At these times, my body got the feedback it needed in vast quantities, and I didn’t feel quite so twitchy as I do now, and as I did as a child. I still stimmed, or course, but with less frenzy, fever or freneticism.

But at times when I was less able to be active, and times of anxiety, anger or sadness, the really damaging stims returned. And nothing could ever soothe my body or soul to my own satisfaction.

I picked my skin. Peeled the ends of my fingernails. Pulled at split ends. Scratched at my scalp. In meetings at work, I worried about what others thought of me as I did so. But I couldn’t stop.

In all those years, I never realised there was a name for what I’d been doing.

When my mum first suggested to my husband and me that our daughter was autistic, I started to read. At that time I was seeing things from the “parent-of-autistic-child” perspective. I started to learn about the need to self-soothe. I gradually learned about fidget toys. And gradually, as I began to discover the writings and videos of autistic adults, I realised that a lot of this applied not just to my daughter, but to me. I realised what it was that I had been doing all my life.

There was a name. And these things I’d been doing all my life, that had this name, were a recognised part of a culture. A culture that I increasingly found myself gravitating towards, associating with.

For a time, pre- and post-diagnosis, I kept my stims discreet. Tangles or worry stones in my pocket. Tactile jewellery subtly fiddled with. I realised there were things I could do, things I could use, which were far less damaging than split end picking or scalp clawing.

And when I was with my children, I could move as they did. I could dance, sway, and spin. I still do.

But there were – and still are – times when this wasn’t enough. As I walked to work, I yearned to windmill my arms, skip, hop and twirl. I wished that dancing could be my default method of commute. I longed to clap my hands, and sing at the top of my lungs. But I was a grownup. A professional. What if someone saw me?

But my body needs movement, and I’m so damned tired of not giving it what it needs.

I need to stim as much as I need to breathe.

It’s part of my neuroqueering to stim more obviously these days. I do make dance-like movements with my arms when I walk sometimes. I do sing, and whistle, and clap. I do clamber onto walls, balancing for a time before leaping off. I reserve most of these activities for quieter, less busy spaces – attracting attention to oneself is risky. But I’ll still let my hands be a little freer with their movements, even in public.

At work, I worry less now about what others are thinking as I wiggle my fingers next to my face as an aid to the thinking process. I sway, twirl and dance by the photocopier as I wait for my documents to print. I tap my hands on my legs as I walk along. I flap them as I wait for the kettle to boil. It’s not a flap of frustration, but a relieving movement that in that moment is necessary.

Of course there are times when I tone it down. We’re not in a world where autism is that well accepted that I can freely be myself at all times. And at times, I suffer for this. Any autistic who’s in employment would do.

But outside of meetings, teaching sessions and polite conversations, I let my guard down more often than I once did. I stim more obviously these days in part because I’m now better attuned to what stims really help me. But in another part because I actually want it to be noticed. I’m still a competent, capable human being; I just happen to be one who needs to stim.

I wish stimming were more normalised. After all, everyone does it. It’s part of emotional regulation – why else does an otherwise calm person pace a hospital corridor waiting for news of a sick loved one? Why else does a student click their pen or bite their nails as they agonise over a tricky maths problem or essay question? Why else does a parent drum their fingers on the table-top as they anxiously wait on hold to have a difficult phone conversation with the headteacher?

It’s just that many of us autistics do more of it. We do it bigger. We need to because of the ways we experience our environment, and our emotions.

I wish I’d understood that when I was younger, instead of torturing myself by trying to stop.


[Featured image: ‘Wave’, by Rob Witcher. Image description: black and white photograph of a hand waving in front of a stroboscope, against a black background.]