Therapy vignettes: was he on to something?

Close-up photograph of household vertical blinds. The lighting emphasises the textures within the blinds, creating an image that seems almost abstract.
Image credit: Ben Hosking

[Trigger warning: death/bereavement.]


October 2006 (12.5 years before autism identification).

It’s a Saturday morning. I’m at the last of a series of counselling appointments provided by work.

The ostensible reason is bereavement; my two remaining grandparents recently died within one week of each other. But actually, we dealt with that in the first week. My maternal grandfather and paternal grandmother had lived long and fruitful lives. Their final months had been full of pain and paralysis, preventing them from living as the people they had been their entire lifetimes. They had been suffering, and they were suffering no longer.

(I’m not incapable of profound grief. I was ten years old when my best friend, a two-year-old black cat named Catkins, was killed by a car. The weeks of disbelief, crying and loneliness that followed were some of the most painful I have ever experienced. And in years to come, I will be devastated by the untimely death of a friend my own age. This will also affect me far more deeply.)

We’ve moved onto something else. Something I alluded to briefly in early sessions, that my counsellor is keen to explore.

***

The counsellor has been sitting opposite me. Although I struggle with eyes, I can’t escape the compulsion to stare at his.

He has some kind of tic (or other neurological quirk?) that makes him flicker his eyes from side to side. I know he can’t help it, but I also can’t help but be intrigued as to its cause, and mechanisms allowing it to happen.

I try to avert my gaze.

***

We’re approaching the session wrap-up. I feel a sense of release, but also depletion. I have expended much today.

“So, as you know, this is your last session with me. But I think we need to look at where to go next. This idea of ‘social impediment’ you’ve been referring to – this seems to be really significant. I feel it’s something that it would be useful to explore in more depth.”

“Okay.”

“So I’m going to give you some details of other providers. You can continue coming to see me. You’d have to pay for future sessions, of course. Then there’s [Service X] – you might find their approach useful. There are a few other options – I’ve written them down for you.”

“Thanks. The thing is…would I have to pay for all of these?”

“Unfortunately yes. Of course you can talk to your GP, but I know the NHS waiting list is really long. You’ll be waiting a long time. And I think you really need some continuity. I don’t want you to have to wait too long – what you’ve been talking about seems really pressing. It would be really useful for you to be able to delve into it properly. We’ve not been able to do this in six sessions.”

“But I really can’t afford it. I don’t earn that much. My husband and I don’t have a lot of spare income.”

“I’m wondering whether you need to think about how much of a priority this is. Your feelings that you are ‘socially impeded’, as you describe it – they seem to be really affecting you. I think you’d benefit from being able to explore it, and get to grips with what it means for you.”

A pause.

“There might be some subsidy available – have a look at [Organisation Y]. There are some criteria, but you might be eligible for some help.”

I look at the piece of paper, and come to the conclusion I probably wouldn’t qualify.

I take a deep breath.

“I’m really sorry. I know this is important. But the thought of having to pay for more sessions stresses me out. I don’t think I can.”

“That’s a real shame. I really feel more sessions might help. But it’s your decision. Anyway, I hope you’ve found this useful for you, and I hope I’ve been able to help you in some ways. Good luck with everything.”

***

Years later, I wonder. Was autism the thing he was getting at? And what would have been my response at that time? At that age?

I’ll never know.


[Image description: Close-up photograph of household vertical blinds. The lighting emphasises the textures within the blinds, creating an image that seems almost abstract.]

Work Vignettes: awful away-day aftermath

Close Up photo of a cup of black coffee, and an Open Notebook With Pen

July 2017 (one year, almost to the day, after autism identification).

Our team is at a Marketing Away Day.

We’re in a hotel in a leafy suburb of the city. But we’re indoors and, aside from refreshment breaks and lunch, confined for the most part to one room.

It wasn’t the best of starts.

No in-advance agenda. No printed schedule available on the day. No timings provided.

The event begins with a series of “ice breaker” exercises.

***

One is a sensory game involving blindfolds, jigsaw puzzles and verbal instructions, with everyone assembled divided into smaller competing teams. We’re against the clock and against each other.

My severely deaf colleague is, of course, nominated as the instructions-giver – it makes perfect sense that she shouldn’t be one of the team members having to rely on listening. The other two of us don our blindfolds.

She shouts instructions and we try to assemble puzzle pieces into a coherent whole according to her words.

All I can hear, the entire time, is the shouting and chatter from the other people across the room. One male colleague’s voice, in particular, cuts through all else in sforzando bursts.

I’m wondering when the break is.

I get panicky as I work my way through the game. I can’t hear my colleague well enough. I yelp at her for clarification. The pitch and volume of voice grows as I struggle to remain calm and concentrate.

I’m wondering when the break is.

Then we have a music quiz. Name that tune. More my area of expertise.

But I’m so on edge I get disproportionately embarrassed whenever I get an answer wrong.

And overwhelmingly disappointed when our team doesn’t win because I jumped in too quickly to answer a question, but then lost my ability to speak coherently.

(I think the tune was Gangnam Style, but never mind that.)

I’m wondering when the break is.

***

Coffee break time.

One of the colleagues who organised the ice breakers approaches me.

“I’m so sorry. We should have realised that a sensory activity was a bad idea. I hope you’re okay.”

“It’s alright, I’m fine”, I lie.

***

Most of the day is spent discussing our marketing plans for the forthcoming year.

A lot of talking. A lot of listening. A lot of sidetracking.

Our team works well, and I like most of them, but as a group of people, many of them (myself included) have an endless need to jump in, make ourselves heard, and to say our piece.

crescendo.

accelerando.

affrettando.

I’m getting a headache.

The Fire Exit sign is backlit, and the light is flickering.

There are so many noises in this building.

Pipes clanking.

Footsteps.

Doors opening and shutting.

Old-building creaks.

Nothing is played in unison. There’s no reassuring pattern to the prodding and poking of each sound. I inwardly wince at sounds. And I inwardly wince in anticipation of more sounds.

Would it be okay for me to slip out and take a break unprompted?

I know my manager said this was fine, but I still feel awkward about doing so.

***

Lunchtime. We eat. I feel the compulsion to interact with everyone.

Then I escape into the hotel grounds for some quiet, and some greenery.

I’m a little late back to the training room.

***

Afternoon session. Action planning. Back to the talking. Back to the listening.

presto.

Headache intensifying.

Heart rate rising.

A cacophony.

I can’t focus. Everyone’s talking at once. How can I be expected to contribute anything to this?

“Excuse me! I’m really sorry, but I can’t concentrate because everyone’s talking at the same time. Would you mind trying to slow it down?”

I catch one colleague opposite me giving an exaggerated eye roll.

Shit.

I really to sort this out with her later.

***

The end of the day. Finished. Migraine is in full swing.

I spot the eye-roller.

“Hi! I just wanted to catch you and say sorry for earlier. I was having a really difficult time. I hope things are okay.”

“Um, can we talk about this tomorrow? I really don’t want to discuss it now.”

“Sorry, but it would be great if we could resolve it now. I don’t want to leave it hanging.”

I can’t leave it. I’ll be dwelling on it all night if we don’t sort it out now.

“Look. I think you were really rude earlier. We’ve all had a very difficult day and I don’t like being spoken to like that.”

Was I rude? I don’t think I was that rude. I’m sure I said “excuse me”.

“I know, I’m sorry. But this day’s been incredibly difficult for me to cope with. You know I struggle with all the sensory stuff, with listening and so on.”

“That’s fine, but it was difficult for all of us. You know, I bring a lot of myself to this job, to this team. I don’t appreciate you being rude, and I’d rather not talk about this any more.”

“Okay, bye. Sorry.”

Why do I keep apologising?

I feel my face getting hotter.

The pressure of the world forcing its way down upon me.

All senses smashing together as one. Atoms in a particle accelerator (but what remains after the smash in this case?).

A crescendo of emotions, inner and outer noise.

forte.

fortissimo.

***

I walk out through the main entrance gates, and as I walk, the tears come.

The world simultaneously closes in and zooms out.

Oscillation. Then a sonic boom.

I feel myself walled off from it by an invisible force field.

The tears stream.

I start to wail.

I punch my fists into my thighs.

I start to scream.

fortississimo.

I lean against a wall. I can barely hold myself up.

Another colleague finds me. Hugs me. Takes me to a nearby pub, buys me a drink and listens to me as I rant and rave. My headache remains, but I gradually become calm. My colleague offers kind words and no judgement.

Later, I take the long route home. stentando.


[Image: Close Up on The Coffee and Open Notebook With Pen, by Marco Verch. Creative Commons 2.0 licence.]

What’s in the bag? A look at Mama’s stim kit.

Still life colour photograph, through warm dramatic “vintage” filter, depicting, in foreground: a sequin-coloured oversized pencil case, out of which spills folded “infinity hoops”, a black Tangle, a red-and-yellow stress ball in the shape of a Marvel ‘Iron Man’ helmet, a small three-pointed metallic fidget spinner, a fidget football, pine cone and seashell, a piece of grey foam, and other items partially in view. There is a smaller sparkly bag inside in which can be seen a small bottle of aromatherapy oil and a tin of lip balm. Behind these is a black bullet journal, and a red-zipped pencil case with in a colourful dinosaur print fabric.

As time has gone on since my formal autism identification in 2016, and as I’ve gradually learned more about myself – my autistic self – I’ve got better and better at recognising what makes me tick.

What makes me anxious, overwhelmed, panicked, angry. What makes me calm, happy, blissed out, joyful.

I’m increasingly better at looking after myself. But this ability to look after myself is continually pushed to its limits, and beyond. It seems that the more I learn to cope with and overcome, the more I get another load of difficult stuff shunted my way. By gosh, I still have a lot to learn.

But I’m far more positive in how I address this nowadays.

A couple of months ago, I put together a stim kit. I was sick of having random bits and bobs floating around in my bag, in each of my different coat and jacket pockets, or scattered around the house and on my desk at work. Sick of repeatedly misplacing favourite objects and toys. Things getting rusty, encrusted with grot, scratched or broken.

I don’t always need things to stim with, of course – dancing, pacing, singing, and many other activities don’t require ‘stuff’. But having small items to hand makes things easier in a lot of circumstances.

Different strokes for different folks

I wanted to give myself more options – a stim for every mood and every occasion. I’m always looking for things to add to it, but for now I’m quite happy with what I have at my disposal.

(Although yes, some of us do indeed like having things to stroke, and I’m still searching for a nice scrap of velvet ribbon…)

I personally let other people (both autistic and non-autistic) try out the stuff in the bag from time to time. It’s great to see someone get fresh stim ideas or discover something new that really works for them, and also fascinating to see what does and doesn’t help different people. I also like to de-mystify and normalise stimming as a ‘thing’.

You don’t have to share your stim stuff with other people, of course. It’s entirely your choice whether you do so or not. I like to, but we all have different preferences.

Very recently, I put something similar together for my daughter (six years old at the time of writing). Hers has some of the same items, but some variation – there’s more squishy and chewy stuff, which suits her.

I’d recommend that all autistics, and parents of younger autistic kids, consider assembling something like this – it’s great to have positive options for redirecting negative/self-injurious stim urges, calming oneself, promoting focus, as well as for sheer enjoyment.

So what’s in the bag?

These are just things that suit me. Everyone has different preferences, and it can take some time to work out what you might want in a kit, and what simply isn’t worth bothering with.

Here’s a rundown of what I have in mine.

Obviously, the main bag itself is a stim item. It’s an extra-large pencil case covered in gorgeous double-sided “mermaid scale” sequins. They’re fun to look at. Tactile and interactive too. As for what’s inside…

First, the things I’ve purchased with actual money:

  • Infinity hoops/kinetic flow rings: Oh. My. Gosh. These look and feel sooooo good.
  • Fidget spinners: I have two in this bag. One is yer classic plastic dooberry (a bit like this one) which I may or may not abandon, as frankly it’s not very good (it was very cheap); the other a “deluxe” metal spinner by Nomad that spins for aaaaaaages.
  • Fidget football polyhedron spinner: this particular metallic thingummy doesn’t spin for very long and is a bit flimsy (another thing that was super-cheap). But it kind of looks cool, and the individual coloured circles make a cool “pwoingy” noise when you wiggle them about.
  • ‘Iron Man’ helmet stress ball: squeezy proprioceptive anger release. Also good for maintaining strength and mobility in hands – something I struggle with because of some anatomical oddities. Plus…Marvel (I also have a Hulk fist on my desk at work).
  • Miniature slinky spring: fun to stretch, run fingers over and hold. The repeating coils are also soothing to look at. This one was from a multipack similar to this one, left over after we’d finished filling a load of party bags for my daughter’s last birthday party.
  • Tangle: one of the first “official” stim toys I bought. An old favourite, but these days gets less outing than some of the other more novel items. One thing that irritates me slightly, given my auditory sensitivity, is the clicky noises it makes when I’m fiddling with it – fine in a busy place, but not so great somewhere quiet.
  • ‘Unicorn poo’ glitter slime: comes in a pot, to keep it safe from glooping up the rest of the bag. Feels lovely and cool on the hands but leaves no mess. Squishy and squidgy. Sparkly.

Next, some free stuff (be creative. Look around your environment and see what you can find):

  • Pine cones: Fibonacci spirals! Patterns! Knobbly textured loveliness! Beautiful.
  • Larch cones: similar to above. But they’re also kind of delicate and pretty in a way that pine cones aren’t. More a visual thing than a tactile thing.
  • Seashell: more natural mathematical beauty. Knobbles, spirals, smooth bits, shiny bits, ridged bits. Lots and lots of tactile soothing loveliness. Calming colours.
  • Piece of packing foam: softer and squishier than a stress ball, this nevertheless provides a teensy bit of propriceptive stimulus, but is also fun to fold and unfold, wiggle around, or simply to run one’s fingers over.

As well as all of the above, there’s a sparkly “bag within a bag” (another visual stim in itself). This is for items that either:

  1. Smell and/or are balms/liquid, and would thus otherwise taint the rest of the stim kit;
  2. Are easily breakable (e.g. glass bottles);
  3. Are small and thus likely to be difficult to find in the midst of the main bag;
  4. Might get tangled up with other contents; or
  5. Need to be kept clean.

In here is where I keep:

  • Lip balm: nice to smell (I have a chocolate-y one), and good for keeping lips smooth and avoiding the scratchy feel of dry skin
  • Aromatherapy oils: good for a more intense (albeit only occasionally needed) fragrance hit – especially when there’s a need to block out more noxious nose-irritants. I have a couple of bottles of oil blends: ‘Less Stress’ (clary sage, lemon, lavender); and ‘Energise’ (peppermint, frankincense, lemon).
  • Handkerchief: the holdable soft fabric receptacle for the above-mentioned oils (sniffing straight from the bottle looks weird, makes my nose tingle, and means the cap is left off too long, which has the potential to cause deterioration to the active components in the oils.
  • Foam ear plugs (in a small plastic case): for when I need to dampen down noise, but noise-cancelling headphones just aren’t appropriate for whatever reason.
  • Communication necklace, from SpaceRobot Studio: to indicate to other people – usually when in autistic space – my level of willingness/ability to communicate verbally with others.

What else helps me?

In addition to these items, I always have handy:

  • noise cancelling Bluetooth headphones (plus something to play the music on, of course). Mine are Lindy BNX-60s, at just over £80 – my budget wouldn’t stretch beyond this, but they do the job well enough for my purposes.
  • sunglasses

They’re generally big-enough, frequently-worn-enough items for me not to lose them (thus far, at least…).

The other things that go everywhere with me are my bullet journal (learn more at the official bujo website), and my dinosaur pencil case, full of lovely coloured pens, pencils and fine liners. Doodling is a stim, but bullet journaling is another absolute life-saver in helping me organise my life, stay mindful, and keep as sane as possible.

When at home…

Over the summer, I also had made for me a weighted blanket and lap pad. These have been a revelation. If you want the low-down on why these are so helpful, Princess Aspien’s video on the subject is a good insight. They don’t come cheap (I couldn’t afford one for a very long time), and I recognise I owe my possession of these wonderful items to a certain degree of material privilege.

***

I hope this post is of some practical use to people.

I recognise that some items are more affordable than others, and this means that for some, it can be a struggle to meet your own sensory needs. If this is you, then I wish you all the best with finding something affordable that works, and I hope your circumstances get easier. In the meantime, look around your home. Look outdoors. Pebbles, seed cases, pieces of packaging (cleaned), bubble wrap, pine cones. Wherever you are, keep a lookout for something small and portable to stim with.

For everyone: I wish you well in finding the stims that truly work for you.


[Featured image description: Still life colour photograph, through warm dramatic “vintage” filter, depicting, in foreground: a sequin-coloured oversized pencil case, out of which spills folded “infinity hoops”, a black Tangle, a red-and-yellow stress ball in the shape of a Marvel ‘Iron Man’ helmet, a small three-pointed metallic fidget spinner, a fidget football, pine cone and seashell, a piece of grey foam, and other items partially in view. There is a smaller sparkly bag inside in which can be seen a small bottle of aromatherapy oil and a tin of lip balm. Behind these is a black bullet journal, and a red-zipped pencil case with in a colourful dinosaur print fabric.]

#AutismAcceptance/#AutismAppreciation doodles ‘n’ scribbles, no. 30: April is nearly over, and I need to take a break (for a short while, at least).

Part of a lilac-painted living room with deep purple floor and white skirting boards. Mama Pineapple, a white femme-presenting person with red hair, wearing purple socks, blue leggings and a red, floral patterned tunic top, reclines on a brown leather sofa, one hand held over her forehead partially obscuring her face in a gesture of weariness. There are patterned cushions around her. Her other hand dangles down towards a white mug full of steaming coffee on the floor just in front of the sofa.A thought bubble above her reads “THANK F**K THAT’S OVER!”.

[Trigger warning: mention of suicide, murder, child abuse, sexism, cissexism, heterosexism, racism, gaslighting, social media abuse, “cure” therapies, ABA, ableism, neglect, mental illness.]


We’ve reached the end of April. The end of Autism “Awareness” Month. The end of Autism Acceptance Month.

And it’s been a hard one. I’ve kept my interaction with social media somewhat limited, but have still managed to encounter much that has upset me.

The thing is, “awareness” doesn’t stop after April.

All year round, every single day:

  • Somebody, somewhere, is working on a “cure” for something that isn’t even a disease or a problem.
  • An autistic adult is being told that their views are not valid because they’re “not autistic enough”, or “not like my child”.
  • Elsewhere, a non-verbal autistic person’s needs and views are being ignored because those around them presume them incapable of intelligent thought.
  • An autistic child is getting the feeling that they’re “broken” and not the child their parents wanted.
  • An autistic child is receiving stressful, traumatic conversion therapy to make them “normal” and remove their autistic “symptoms”.
  • An autistic child is becoming seriously ill through being forced to drink bleach or overdose on vitamin C to purge them of “toxins”.
  • Someone is talking, in all seriousness, about “vaccine damage”, and about autism being an “adverse effect” of vaccines.
  • A parent or caregiver is contemplating murder.
  • Somebody, somewhere is telling an autistic woman that they have no business calling themselves autistic because they, and others like them, have caused the diagnosis to be “dumbed down”.
  • Female autistics, autistics of colour, and queer, trans and/or non-binary autistics are being told to “stop making it all about them” as everybody needs support.
  • Somewhere, a media outlet is mocking autistic people and enforcing dangerous stereotypes.
  • A harmful meme is being spread on social media, and autistics are being told to “lighten up” and “get over it” as it’s just a harmless joke.
  • A healthcare professional is delivering an autism diagnosis to the parents of a child, and warning them of all the things that child will never do and explaining all the ways in which they are broken.
  • An advertising campaign is doing exactly the same in a series of commercials, flyers, and posters.
  • An “autism warrior mom” is lamenting her plight and desperately wishing that her child wasn’t such a burden.
  • Another parent is battling educators, healthcare providers, insurers and local authorities to get the support their child so desperately needs, but that is so difficult to come by.
  • An autistic teenager is contemplating suicide because they can’t stand the bullying any longer.
  • An autistic adult is staring at another job application form, wondering whether to disclose or not, how they’ll manage an interview and wondering whether this time they might finally get lucky after so much rejection.
  • Another autistic adult is trying to fend off the overwhelm and overload of working in an environment that’s uncomfortable, painful and overly-demanding of their senses and cognitive function.
  • Yet another is wondering how on Earth they’re going to get the financial support they need to enable them to live.
  • An ill-advised person in a position of power and influence is bemoaning the “autism epidemic” and wondering how on Earth it can be stopped; how autism can be put to an end.

And so much more. All over the world. Every day.

The scourge of “Awareness” never stops.

And so the work to promote Autism Acceptance must never stop. There is so much work to do.

Meanwhile, autistic people are living, loving, laughing, thinking, creating, caring, acting, performing, helping, supporting, advising, campaigning, sharing, uplifting, amplifying, celebrating, commiserating, learning, working, teaching, making, saving, rescuing, mentoring, encouraging, inventing, designing, innovating, suffering, shouting, crying.

Speaking.

And all the other things that humans do.

We’re here. It’s time to accept us, and appreciate us as a part of the world we, and you, all live in together.

Thank fuck April’s nearly over.

But the struggle never stops.

***

As for me, I’m going to have a bit of time off. My emotions, and my hyper empathy, have been, well, hyper, this month. I’ve been up, I’ve been down. And I’m pleased I’ve managed to post an entire month’s worth of images, every day, to do my bit to promote Autism Acceptance and Appreciation. But it’s cost me, as has seeing all I’ve seen (and I haven’t seen the half of it, believe me).

So next month, I’m not going to be around much. I might post the odd thing; but I might not. I’ll see how I feel.

May will be a month of self-care. God knows I need it. And my family need me. My loving husband and my beautiful children will be my focus this coming month. Plus work, and a couple of long-overdue projects that really need my attention.

I’m going to have a rest from blogging, just for a short while.

Ta-ra for now, chums!


[Image description: Part of a lilac-painted living room with deep purple floor and white skirting boards. Mama Pineapple, a white femme-presenting person with red hair, wearing purple socks, blue leggings and a red, floral patterned tunic top, reclines on a brown leather sofa, one hand held over her forehead partially obscuring her face in a gesture of weariness. There are patterned cushions around her. Her other hand dangles down towards a white mug full of steaming coffee on the floor just in front of the sofa.A thought bubble above her reads “THANK F**K THAT’S OVER!”.

I’m very sweary, and would normally quite happily not star out the swear words, but I’m hoping doing in the featured image so might help the circulation of this a bit.]

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.]