‘Unpost’* one: solace in a spider web

Have you ever watched a spider spin its web? I mean, not just watching a speeded-up playback of a time lapse recording on the telly, but actually sat or stood in front of a real spider spinning its web in real time before your eyes?

This afternoon for the first time I did exactly this.

In recent weeks, I’ve been coming to the increasingly clear conclusion that I have, for a long time, been suffering from a certain degree of complex post-traumatic stress disorder (C-PTSD). This isn’t something I’ve randomly decided, and it’s not something I’m plucking out of the air. There have been discussions going on in the adult autistic online world, and much of this resonates with me.

I’ve struggled for some time to write any new posts for this blog. I seem to be in a constant state of exhaustion. I haven’t had the energy, time, or emotional wherewithal to write much in the way of new content – whether whimsical, creative, exploratory musings, or intelligently- and expertly-crafted essays.

I haven’t had the battery power for advocacy, politics, or any form of campaigning on behalf of myself or of any other autistics through my writing. I’m barely keeping my head above water sufficiently to do my job, or be an effective parent.

But my recent “vignettes“ posts seem to be coming out of nowhere. Painful memories have been coming to the fore as a result of chance conversations and certain word combinations I have read or heard online, or they’ve revealed themselves as the landscape and landmarks surrounding some of the stops, halts, or termini on the journey taken by my train of thought.

They’re flashbacks.

They’re vivid.

And while I can’t get rid of them entirely, by capturing them in writing, I’m taming them, before releasing them into the wider world in a controlled fashion, their custody no longer solely my responsibility.

I know there will be plenty more of them.

I’m increasingly realising that I have been traumatised. Not by a sudden, catastrophic event. My trauma is cumulative. It is the trauma of countless small painful experiences. Emotional pain. Intellectual pain. Social pain. Sensory pain. Some of that pain has been of a primarily physical nature; sometimes, the effects upon me of other forms of pain have themselves been physical.

Some of that pain has been inflicted upon me by other people – both prior to and since my autism diagnosis. Some of those who inflicted that pain were fully aware I was autistic, many weren’t. A lot of pain has been (and still is) self-inflicted – I’ve learnt to expect negative interactions with others, or problematic interpretations of my behaviour, actions, and modes of communication. I’ve learnt to assume that I’m the one in the wrong even when I know that, objectively speaking, that isn’t the case. And I beat myself up about it.

Today was a team away day. It was a far more positive experience for me than the event which formed the subject matter of a recent work vignette. The afternoon discussions were practical, and produced some tangible results that might actually help to shape the services we deliver and give us some concrete objectives.

From an accessibility point of you, everything had been handled pretty well. The venue wasn’t sensorily objectionable. I, and a fellow autistic working in our section, had received plenty of advance information about the structure of the event, and details on the format of specific activities. I didn’t feel remotely uncomfortable about ducking out of conversations during the breaks and sitting in a corner with my headphones on, or taking myself outside for a breather.

But the first exercise of the day felt problematic for me – we were each asked to pick a shape that we felt most closely represented who we were as individuals. Having looked at the material beforehand, I had already made up my mind that I was a “squiggle“. There were a fair few of us squiggles, including a not-insignificant number of neurodivergent folks in the room.

I associated the squiggly line with dynamism, energy, creativity, exploration, lateral thinking, and a busy, active mind. Boxes are too rigid; circles have some appeal to me, with their lack of endpoint, their sense of unity, continuity, inclusiveness, and something of the holistic. I don’t see myself as a pointy triangle or a rectangle.

We were asked, in individuals then groups, to note down words associated with each of the shapes – the ones we most strongly identified with, our second choices, and those with which we identified the least strongly.

Whilst it was meant to be a harmless, lighthearted, not particularly scientific activity to provoke discussion about team dynamics, and help us think about the characteristics of some of the people we work with, I couldn’t help feeling triggered by some of the more negative words and phrases that a few “non-squiggle” colleagues associated with my shape.

Flaky

Out of control.

Messy.

Doesn’t plan anything – or struggles to stick to plans.

Unpredictable.

There was hostility towards some of the other shapes as well – the “box/square” came in for a fair bit of criticism.

But whilst it was not intended that we read too much into this, I was reminded of all the times when people have levelled criticism at me without fully understanding me. I’ve been told I was out of control, that I can’t multitask, that I’m disruptive. I’ve called myself “stupid” and “lazy” because I procrastinate, have difficulty planning and organising, and difficulty seeing things through – often because too many other ideas are crowding my consciousness, vying for my attention, but also, frequently, because I simply can’t make my brain “do the thing”.

I’ve been criticised, and often criticised myself, simply for being the way I am in a world in which my way of being isn’t the majority modus operandi.

When all the time, I’m having to negotiate far more just than the explicit task at hand. I am, in fact, multitasking by default, because – as a disabled person and an autistic person – I am simultaneously performing so many extra “jobs“ on top of the one that I’m paid to do. I don’t always have the energy to perform that job well as well as I’d like, because my energy is being expended elsewhere in a way that those who do not share my neurotype couldn’t possibly imagine.

And as a perfectionist, that sucks. I like doing things well.

So recently, I’ve been going through a bit of an “I hate my brain“ period. I’ve been resentful of the fact that I’m a polymath, with a constant explosion of ideas taking place in my brain, but little ability to focus on one project, activity, or idea to execute well, and little time or energy to devote to these passions.

It’s not really the right time to chase my dreams – my children are still very young, both are neurodivergent and need a lot of input. I’m still getting to grips with new job and a new work environment. Various members of my family, and I myself, are experiencing a fair few health challenges.

Which means I find myself resenting the ideas that come to me. I can’t actually do anything with them, but I don’t have the patience to leave them be, or make a note of them to pursue at a future time when I’m more sufficiently resourced to do so.

After the away day, I was tired. So much listening. So much processing. So little rest. But as the working day finished earlier than usual, I decided not to go on a long wild walk, but instead to take my usual route home through several of the local parks but do so more slowly, more mindfully.

Rather than feeling the compulsion to experience the expansive, the large-scale, the landscape at macro-level (as is often the case when I chose to take myself outdoors to shake off my overwhelm), I was compelled to examine the outdoors in miniature.

I stood watching bees pollinating flowering bushes and shrubs. I was fascinated to note that certain types of bee preferred certain plants. I appreciated, for perhaps the first time, the what-should-be-damned-obvious fact that bumblebees (being insects) have bodies (like all other insects) that are articulated into three distinct sections rather than being a somewhat indistinct ball of fuzz with a head, legs and wings.

Closer to home I spotted a ladybird perched atop a valerian stem. I noticed its mouthparts, antennae, the articulation of its six limbs, its individual pattern of spots, and the smaller segmentation of its thorax, visible briefly on the underside of its body as it clambered over a leaf stem, beneath the modified wings that were its scarlet, polka dotted shell.

And then I saw the spider.

A garden spider, minutely patterned in greys, beiges and taupes. A particularly tiny example of the species.

It had just begun to construct a web between several valerian stems. The radial threads were already in place, and at the point I started to observe the tiny creature, it was in the process of strengthening the centre. As I watched, it finished this stage, before constructing a few non-sticky spiral threads to allow it to scamper to the outer reaches of the structure, before spiralling inwards with the final, sticky silk that would form the completed web.

The threads were so fine they were barely visible without holding my head at a tilt.

I had never before appreciated the meticulous complexity, or the beauty, of the web-spinning process itself.

In watching the story of the web’s construction unfolding before my eyes, I slowed down. I relaxed. I smiled. I took solace in nature doing its thing. Solace in the spider’s web.

And I appreciated my brain again. Appreciated my love of detail. My love of close-up examination that is just as strong as my love of patterns, connections and the bigger picture. My ability to enjoy such things without having to quantify them, or question whether or not I should be spending my time enjoying them.

I felt restored.


*I have Anna Nicholson of Transponderings to thank for the idea of ‘unposts’ – it’s useful sometimes to be able to post a set of uncategorised, stream-of-consciousness musings. I’ve recognised the need to be able to write without necessarily putting pressure on myself to come up with something polished.

Anna – I hope you don’t mind me pilfering this approach! ☺️

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.]

#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.]

#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.]

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.]