Sweet abandon

Three silhouette figures, one adult and two children, dancing, surrounded by swirling colours and musical notation.

[Trigger warning: mental illness; self-injurious stimming (as well as the good stims that are hard exercise and dancing).]

The Saturday just gone:

So it’s happened. I’ve finally realised that I am definitely properly depressed at the moment.

I’ve thought I was, then thought I wasn’t; thought I was, thought I wasn’t. For a while now. I kept thinking my quick bouts of misery were a symptom of autistic burnout, or simply an acute pang of painful response to the occasional sudden rise in the immediacy of The Problems I Am Dealing With Right Now; something unexpectedly looming large on the horizon that sees my legs crumpling beneath me as I tumble to the ground.

But actually, these acutely painful moments have been mere spikes in overall negative emotional noise level. The low-level hum of depression, sometimes infrasonic, has been gently oscillating along in a line beneath the crashing noise of all of my day-to-day experiences for a fair while, without me properly registering it. But now I have. The pitch and the volume have risen, and it’s too loud to ignore. Is it a moan, a whine, a whistle, a hiss, or a wail? I’m not quite sure. But it’s sustained, and it’s loud.

Saturday morning. My daughter is watching a film in the living room downstairs. My husband is sleeping in. My son and I are in the big bedroom, playing with Lego. I watch him, I interact with him, and all the while I feel simultaneously both utterly nothing and utter despair.

I’m not quite fully there.

Later, my daughter joins us. The two of them both at work with the Lego; absorbed, building; each doing so in their own age-specific, personality-specific way. I interact with these two beings whom I love more than anything in the world, but I am removed. I am exhausted.

Then the wooden train set comes out.

Somehow, most of it ends up not on the floor of the bedroom, but outside the bedroom door, on the landing. Right where it’s a large, jumbled collection of small wooden trip hazards at the top of a very steep staircase.

I repeatedly ask my children to tidy the pieces up, or at least to carry them through the doorway and into the room, away from the stairs. They can be pretty good at tidying up. Sometimes. And I need them to understand why leaving toys on the stairs isn’t the best of ideas.

But they’re too intent on what they are doing. They don’t even hear me.

My requests get louder and more urgent.

(I still remember to use the word “please”, however.)

Still they are oblivious.

Eventually I lose it.

I scream and shout. I disappear into another room to smack my own head repeatedly for 30 seconds or so, before returning.

Afterwards, my husband finds me sitting at the top of the stairs, glum, despondent, detached. I burst into tears, and struggle to stop.

***

We agree that although I’ve promised our daughter I’d take her to the school Christmas Fayre (and it has to be me who takes her), afterwards I can go off and do my own thing for a few hours. I plan a trip to the gym.

Husband takes our son with him on an extended shopping trip. The girl and I do the Christmas Fayre thing.

She does a few messy crafts, a find-the-word treasure hunt, and eats too much sugary stuff. I try not to get too exasperated with the busyness and loudness of it all, but she loves it. And I love that she loves it. She has fun, and comes home with me, happy.

And I disappear off to the gym. I exercise with sweet abandon.

60 minutes of “Around the World”: a random-generated programme of hard hills and sprint intervals on the stationary bike. I sweat. My heart thumps. I breathe. I focus. And although I never exercise wearing headphones or earbuds, the hi-NRG dance music on the gym stereo this afternoon works well to keep my legs pounding. On the hills, I push down the pedals in time to the beat. During the sprints, I do my best to beat the beat, spinning my legs faster and faster. I lose myself in movement, beats, vocal samples, distance log, timer, calorie counter, and revolutions-per-minute.

Core work, stretches, home. Food on the table.

And then, the thing that I need perhaps even more than the gym.

It’s Saturday night, and my daughter wants to dance.

***

I’m glad that we’ve resurrected our living room discos. When I was pregnant with her brother and got too big, too much in pain, and too uncomfortable, we stopped. And for a long while afterwards we didn’t do it. But over the past few months, we’ve started dancing again.

And tonight, I dance with sweet abandon.

We always start with the same sequence of four tracks: ‘Nice Weather for Ducks’ (Lemon Jelly); ‘Treachery’ (Kirsty McColl); ‘Brimful of Asha’ (Cornershop – Norman Cook Extended Remix); ‘Squance’ (Plaid).

Whatever else we play in the middle (eclectic, but still very much the playlist of a ’90s indie kid), we always slow down and end with ‘Cole’s Corner’ (Richard Hawley). My daughter likes it that way.

For a while this unvarying start and end to our playlist used to grate (and I’m sure it still does with our neighbours). I have so much music. There’s so much of it my children haven’t yet heard. So much more variety than they’re ever willing to hear. I want them to enjoy it all.

But really, I don’t mind the repetition. It’s comforting to my daughter, and after all, I was the one who introduced these songs to her.

Tonight, I’m relieved to hear them, in the specific order we always play them. And whatever else is lurking in my collection, the songs we tend to play are the types of song that make my kids happy.

My “style” is a flailing mix of mangled Street Dance, distorted Twist, skewed Salsa, and a whole lot of jumping, hopping, twirling and swaying.

Sometimes I pogo. Sometimes I waltz. Sometimes I bring in body-weight training moves from the gym. Sometimes my daughter and I join hands. She grins. My little boy weaves between our legs, spins around, stomps his feet, and giggles. During ‘One Step Beyond’ we all run repeatedly around the room in a big circle. My children laugh and smile.

The physicality is all. My very being craves it.

I was already sweaty from my gym exertions. And now I sweat again. I don’t stop. There’s no point, until all of us are ready for it to stop.

Sometimes, I let my body fall from side to side, catching myself by engaging my core or gripping a piece of furniture before I land. Everything moves. Everything must move.

My body loses itself in sweet abandon to the music.

Even as my children slow and tire, I carry on (for a while, at least – I’m not so divorced from their needs that I can’t tell when it’s time to bring things to an end).

My little boy watches, content but approaching sleepiness. My girl intently examines the Pete Fowler designs on some Super Furry Animals CD single cases, still listening to what’s on the stereo, still requesting more songs.

And eventually, it is time to stop. We slow things down. ‘Cole’s Corner’ has its spin, and I, the sweating, panting, dishevelled beast that I am, cuddle my children close. They smile again – at each other, at me, to themselves.

It’s story time. And soon it’ll be bedtime. I’ll cuddle them close again before they go to sleep. Later, I’ll shower and crawl into bed myself.

And no matter how desperately sad I was that morning, when I finally lay my own head down later that same night, I go to sleep replenished, nourished, and filled with love.


Last Saturday’s playlist

  1. Lemon Jelly, ‘Nice Weather for Ducks’
  2. Kirsty McColl, ‘Treachery’
  3. Cornershop, ‘Brimful of Asha’ (Norman Cook extended remix)
  4. Plaid, ‘Squance’
  5. The Bees, ‘Chicken Payback’
  6. Beck, ‘The New Pollution’
  7. Belle and Sebastian, ‘I’m a Cuckoo’
  8. Bassment Jaxx, ‘Good Luck’
  9. Madness, ‘One Step Beyond’
  10. Madness, ‘Baggy Trousers’
  11. Super Furry Animals, ‘Golden Retriever’
  12. Super Furry Animals, ‘Northern Lites’
  13. Eels, ‘Last Stop: This Town’
  14. Richard Hawley, ‘Cole’s Corner’

[Featured image description: Three silhouette figures, one adult and two children, dancing, surrounded by swirling colours and musical notation.]

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Are we REALLY that inflexible?

Less than a fortnight ago, I wrote about being “rigid”.

I explained about my need for schedules, plans, and organisational strategies. My need to prepare, and my alarm and anxiety in the face of uncertainty and ambiguity.

It’s there in my pre-assessment mapping to the DSM-V guidelines, under my response to Criterion B2, exemplified by:

“Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal/non-verbal behavious (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns[…])”

But as always, things are never that simple.

I mean, yes, of course, I need to organise and structure my life in the face of chaos.

Yes, of course, I struggle with change.

Yes, of course, I find “decision fatigue” harder to deal with than your average neurotypical person, because I am overwhelmed when faced with choice.

But the fact is, by the time I come to make decisions of a personal nature, I’ve already had to make thousands and thousands of micro-decisions simply to negotiate life in a non-autistic world.

By the time I come to realise I’m going to have to employ a few time-management tools and get a little help with planning, prioritising, and bending my schedule to a shape that I can work with, I’m already bent out of shape myself.

I’m always bent out of shape.

This is the nature of being disabled. And it’s not my disability – my autism – that bends me out of shape. Autistic is my natural shape.

No. It’s this world that forces me to flex, bend, fold, and contort myself.

I have to flex, bend, fold, and contort my brain, my personality, my personhood, my humanity – my very being – to suit the world in which I find myself.

We talk of “reasonable adjustments” – those supports, changes and accommodations made to improve access and enable disabled people to live, study, and work in an abled environment.

And these help. They certainly do for me.

What we rarely talk about is how many adjustments disabled people have to make every single day, to make themselves acceptable to their abled family, friends, fellow students, teachers, colleagues and employers.

We’re continually making adjustments. Maybe even continuously so…

We talk of autistic people – women and girls in particular, but I think the same can be said of anyone who has an atypical autistic profile – as “social chameleons“.

I think it goes further. We’re social contortionists.

It isn’t simply that we wear a mask or assume a role. It isn’t simply that we continually swap and switch between many masks or roles.

We’re constantly bending ourselves out of our natural autistic shape. Flexing, bending, folding, contorting, and re-configuring ourselves the better to occupy a space that doesn’t accommodate our natural form.

We have to do it consciously.

And at times, it’s painful.

And by the time we’ve done all this, on top of everything else that our brains process every minute of every day, it’s no wonder we want to retreat to structure, control, routine, rigidity.

We simply haven’t any energy left to contend with any further bending of our reality.

As so often, in describing our thinking and our behaviour as “rigid”, autism is viewed through a neurotypical lens. We are compared to those around us, and found lacking.

We are not the default, and so, consideration is not given to all that we are contending with internally, simply in order to operate pseudo-successfully in the world in which we find ourselves.

I’m tired of being a contortionist.

I’m tired of being bent out of shape.

And I long for a world in which I can always feel free to assume my natural form.


[Featured image: Circus Contortionist, by ‘Kobra’. Used under Creative Commons Attribution 2.0 Generic (CC BY 2.0) licence. Image shows a person wearing black-and-white skintight clothing with their spine flexed backwards to such a degree that their head is touching their buttocks, and their hands are grasping their calves from behind.]

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”]