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.]

Advertisements

#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.]

Why I “can’t possibly be Autistic”, Reason #3: I’m not THAT rigid, right?

Over a decade ago, when I was working as a low-level administrator in a university student support unit, I remember a student who was a regular and frequent visitor to our service. He came in virtually every day. He spoke in a staccato, “mechanical”-sounding voice. He always wore the same choice of clothing: blue outdoor coat; dark tracksuit bottoms; white polo shirt. In all the time he was studying at that university, I never remember him wearing anything different.

I was, and am, nothing like him, right?

My mum used to work with a boy who ate Chicken McNuggets every day for lunch. Always the same number of pieces, heated to the same exact temperature. The local McDonald’s staff knew him well, and understood what he wanted, and needed.

I was, and am, nothing like him, right?

Whatever I watched, heard, or read about autism, I couldn’t relate to. I was nothing like these men and boys.

As a child, I never had visual schedules. I enjoyed back then, as I do now, a wide variety of tastes, textures, and types of food. I didn’t wear the same thing everyday; nor did I want to. My days were not uniform. The same thing didn’t happen every day. Nowadays, I get easily bored of too much of the same.

People like me can’t be autistic, right? We’re not that rigid, right?

…right?

But the reality is far more complicated, more nuanced, than it first appears. 

I remember the time when my secondary school switched to a fortnightly rather than a weekly timetable. The fact that I had to remind myself which week I was on; the fact that I couldn’t neatly draw out my timetable in my planner without having to devise a “system” to neatly display both timetable variations – these things bothered me immensely. I could never quite escape the vague sense of unease about the inelegance of the arrangement.

Then there’s my extreme (internal. I keep it well hidden) perturbation whenever my regular fitness instructor isn’t working and someone else is covering the class. To the point where, at the moment, I’m not doing my favourite weekly Body Max session because I know the instructor is recovering from surgery. I’ll just do my own workouts until I spot her exercising in the gym between classes, and can find out for certain that she’s back in charge. 

And then there’s the fact that (and I’ve quote-unquoted my dad on this before) drawing was “the only time I was ever truly spontaneous”. Everything else in my life had to be rigorously planned. Prepared for. Structured.

That’s still the case today. It’s why I struggle with keeping momentum at work during university vacation time, and why I often experience sudden bouts of acute depression when I have too much time on my hands if I’m on holiday.

The routine isn’t there. There are too many individual, on-the-fly, ad hoc decisions to be made. There’s not enough structure, and so I struggle to keep the chaos of the world around me at bay.

There are countless other examples of my need for rigidity. It’s ingrained.

Right now, I’m going through a horrendously uncertain period at work. Nothing about me personally, but the details of which I’d rather not go into here. Partly because I, and those around me, don’t actually know anything. But it’s preventing us doing properly all the things we should be doing as part of our regular jobs. We’re hamstrung. Stymied. 

Not only is my anxiety heightened because of so much uncertainty, ambiguity and unpredictability; the regular structure of my daily and weekly work has been disturbed.

So I’ve imposed my own structure.

I’ve blocked out every day of every week with repeated, regular chunks of specific types or topics of activity. I’ve thought about what I work best on when, and organised a “timetable” accordingly. What I may be doing in each time-chunk may vary, but knowing, for example, that most Mondays and Fridays I won’t have any meetings, that I deal with anything to do with our Salesforce database on a Wednesday afternoon, and that Tuesday and Thursday mornings are my designated times for dealing with difficult email correspondence, certainly takes a load off my beleaguered mind.

My context-based Google task lists fit neatly with this structure, and I try and plan meetings to fit in too – recognising, of course, that sometimes I will need to switch things around. But even with the understanding that some flexibility is needed, I have, at the very least, a framework. Everything’s not quite so gapingly uncertain.

More recently, I’ve been having a go at bullet journalling. It’s early days, but so far I’m loving it, and this analogue, paper-based system integrates surprisingly well with my digital organisational tools, whilst also thankfully taking me away from so much screen time. I’m sure I’ll write more about it at some point…

A fellow autistic woman at work talked to me about how being organised is not a natural trait but a coping mechanism, and I’m certain this is true of me too. Many of us have to work really, really hard at organising our work, our lives, and our minds, simply to keep our heads above water and not drown in a sea of too-much-information.

But the initial effort of introducing some structure is something worth doing.

Amidst the chaos and uncertainty, a little rigidity can be lifesaving.


[Featured image shows a screenshot of the first result of a Google search for a definition of the word “rigid”]

It’s never all bad.

[Author’s note: I’m publishing this post almost simultaneously with a previous one because I had both stored up as drafts in my paper notebook, but hadn’t had sufficient “get-up-and-go” to publish them until now. This is the more recent of the two.. However, I felt that the other post was sufficiently time-specific to need publishing pretty sharpish; hence, a buy-one-get-one-free, one time only offer.

Trigger warning: mental illness.]


It’s only dawned on me over the past few days that I have recently become horribly depressed.

In recent years, I’ve grown so accustomed to anxiety being my particular mental illness du jour that this particular “episode” has caught me unawares. The gloomy weather front had been advancing, but I’d continued to try to play in fading sun, in denial of the specks of mental drizzle and the occasional gust of despair – forcing myself to soldier on, like an anorak-clad British holidaymaker building sandcastles on a rainy, windswept beach.

But the feeling that I’m “not good enough” is unmistakeable. The veering between floods of tears and experiencing a desperate need to cry without being physically able to do so. Even all the beautiful detail around me seeming, on occasion… somewhat flat.

I’ve been here before.

I’ve been ground down. One too many instructions to “just try and keep your reactions under control” in the face of the near-constant sensory onslaught, extreme distractibility and utter breakdown of executive function that come with being an autistic parent off work for three weeks of the summer holidays and contending with the looking-after of a five-year-old and a toddler in the throes (though he’s not reached the official age for it) of the “terrible twos”.

An awareness of A-level results being received, and the recent discussions about “giftedness” have caused me to mentally reframe much of my lifetime thus far of academic experience. And the anger has been building and building and building over all the things I didn’t achieve. All the times I felt I “wasn’t good enough” when I wasn’t playing on a level field. And I didn’t even realise I wasn’t.

I’m self-aware enough these days to recognise that the “not good enough” feelings are untrue, inaccurate, unfounded. But that doesn’t stop the anger and sadness.

And yet, it’s never all bad.

I’ve spent a day on my own. My husband and I agreed that I needed at least a couple of days entirely to myself during this final week of the holidays,

And as always, as I go about my day, I continually experience reminders of times gone by: scenes; sounds; images; smells; snatches of speech. Triggers of past memories. And though my current prevailing mood shares its similarities with those of dark times past, I can’t help but experience some pangs of nostalgia for those times. Fondness, even.

Right now, so many of the clothes I see in shops, and worn in particular by young people, are in styles that last saw the light of day when I was a teenager. I see young people in their teens and early 20s, kitted out in uncannily familiar garb and hairstyles, and my heart goes out to them. I feel compassion, admiration, wry amusement, wistfulness. But also hope. They have so much of their lives ahead of them, and I desperately want to believe that none of them are experiencing the pain I felt at their age.

And yet to say it was constant pain does my entire life a disservice. For all the years I was depressed, I still experienced joy, laughter, companionship. Long deep conversations, or just ridiculously amusing ones. The excitement of gigs and festivals. Band rehearsal camaraderie. Bright, golden sunlit days. Starry skies. Euphoria. Dancing. And oh, so much love.

During my formative years, I struggled with my sense of true self. I still do. Womanhood and femininity still come awkwardly and unnaturally to me. And yet, I have always been me, deep down, Any sense of self I did have back then was distorted by lack of self-knowledge and yet…those years were still formative.

And despite any pain, I still had so much fun. Sincerely.

It’s never all bad.

Any spike of fun a person has during an extended bout of depression does not negate the experience of that depression. It’s not a flatline. But that doesn’t mean it isn’t still hard to bear.

I had a great day. A lengthy morning gym session. Towards the end of that, yes, I did feel the pricks of tears that wouldn’t come. It took a long time to get myself showered, dressed, and home.

But then I was out again. Gin and tonic and tapas for lunch, and an unexpected kindness from a long-not-seen friend. The necessary evil of a bit of shopping, and then a lone trip to the cinema. I revelled in the darkness of the theatre. The film, Detroit, was masterful. Harrowing. Shocking at times. Tears welled in my eyes as the ending approached. But one doesn’t always need levity and glee to be taken out of oneself. I was immersed in something other than my own gloom for over two and a half hours.

And I returned home to my family. I cuddled them, made them tea, and played makebelieve with my daughter. We visited a haunted house.

I’m still, in the grander scheme of things, depressed. But it’s never all bad. Today was good for me. 


[Featured image: bright green, somewhat “architectural” foliage – stiff, long leaves with sharp pointed tips and veins that firm concertina folds along the entire lengths of each frond.]