‘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! ☺️

#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.]

Modern lighting is rubbish.

Nothing makes me a more committed proponent of the Social Model of Disability than modern lighting.

I am far more disabled, as an autistic person, than I once was. I’m far less tolerant of sensory triggers than I once was. Noise and bright lights are the things that get me more than anything, and more than they ever used to.

And yes, some of this is down to tiredness, lack of downtime or time and space to myself, and the fact that I have a lot more going on in my life than I did in my childhood, teens and 20s. But the truth is, I’m also better able to cope with a shit-tonne more stuff these days than I was able to in my childhood, teens and 20s. I’ve learned strategies. Approaches. Methods. I exercise. I eat healthily (most of the time). I do activities that nourish and fulfil me. I share and unburden myself in a variety of ways. I manage.

And yet, here I am, far less able to deal with noise and bright lights the ever before.

It can’t just be me, can it?

And no. It isn’t.

Modern lighting is rubbish.

Social media discussions abound with autistics agreeing on how the menace of twenty-first century lighting affects their lives. Some folks no longer drive at night. Some, like me, have never driven, but find ourselves in the absurd position of having to wear sunglasses more often at night than we do in the daytime.

I’ve talked several times on this blog about my need to get out of the house for a walk – sometimes quite late at night. And there always used to be something soothing about the way older streetlamps bathed the path, the entire view in front of me, in a warm orange glow. Although I love nature, and the colour green, I use an awful lot of orange in my art. It’s a colour I’m drawn to. Perhaps it’s to do with melatonin, and needing to find ways to wind down and draw myself closer towards a place of restfulness. After all, apps abound that allow us to adjust our mobile phone screen settings to warmer, redder tones at night-time to aid sleep. Plus, everything being bathed in an orange glow means the overall contrast is reduced. The view in front of me is less jolting, stern, and abrupt.

But nowadays, my soothing night-time walks are increasingly ruined by modern lighting. All over my city, the outdated orange lamps have been replaced by new generation LED street lighting, in gleaming, glaring cold-white.

And I know. It’s more energy-efficient. The fact its beams are more “directional” means there’s less light pollution (although I’m not sure how much the local wildlife appreciates something akin to daylight beaming down on nests, burrows and other habitats). The fact it’s closer to daylight means it’s easier to catch assailants on CCTV.

But it’s ruining night-time for me. Truly and utterly. And not just night-time.

There is an ever-increasing prevalence of this particularly cold, stark white “daylight-spectrum” lighting not only along the pavements I walk, but everywhere. Car headlights. Bicycle lamps. The ceiling panels of shops, classrooms, meeting rooms and buildings where public health services are provided. Nowhere can I escape from its obnoxious, searing glare.

I recently had to cease giving blood, something I’ve always been proud and happy to do. I am truly gutted that I can no longer do so, but the truth is, the environment of my local donor centre is no longer accessible to me, since it was refurbished with bright panel lighting. After my last donation, I was in bed with a two-day migraine from the overwhelm of the situation. The centre already had televisions to keep the plasma donors entertained, and a radio blaring to mask confidential conversations. That was already a lot to cope with, on top of the mild discomfort of the donation process itself, and the unnecessary chitchat from centre staff well-meaningly aimed at calming and reassuring donors, but no good for an autistic donor like me. They installed the new lighting to allow greater visibility to the staff setting up the blood collections. Fair enough.

It just means I can’t do it any more. It sends my anxiety levels through the roof. Were I not employed full time and the parent of young children, I might have sufficient downtime to recover from the sensory demands and overwhelm of donating. But that isn’t the case.

Neurotypical friends have queried my sensitivity to LED lighting in particular. They’ve argued that – if installed properly – it shouldn’t flicker (the issue many people perceive to be my problem, here). They can’t see why it’s such a problem.

But no. Whilst flickering is a huge problem for me, for the most part because anything that moves quickly, repeats, or rapidly changes is very distracting, that’s not what I’m talking about.

Beyond the fact that modern lighting is brighter, and if it’s LED lighting I can see All The Dotty Patterns Of Every Single LED, and that if the methods of diffusion/power supply/wiring/whatever are crap or cheap (or both) then it doesn’t work properly.

Beyond the fact that the contrast between it and the surrounding darkness is so stark that it’s an additional source of overstimulation (bear in mind, here, that I’m someone who even wears sunglasses on overcast days to avoid having to scrunch my eyes up whenever I’m outdoors). Beyond the fact that the latest car headlights dazzle and dizzy me to such a degree that I’m perpetually at risk of a migraine.

The biggest problem I have with lighting that mimics daylight is that I can’t ever get away from the intricacy and complexity of my visual environment. I can’t switch my brain off, and I can’t switch off the stuff it notices all the time. And with modern lighting, All The Bloody Details are even more blindingly, bastardly illuminated than they ever were before.

As I have described on so many occasions, my brain notices way more of what I see than the brain of an average neurotypical person. And this is why, despite needing glasses or contact lenses to correct my shortsightedness and astigmatism, it feels like seeing in ultra-HD all the time.

Noticing all the details that others don’t see can be super-cool – joyous, joyful, life-affirming – when I’m happy, healthy, alert, well-rested, and not in anyway stressed. It can be a lot of fun. But when I’m not feeling great, I’d like to switch it all off, or at least adjust my mental screen resolution down a few notches.

I never get the chance to have things nicely toned down. Sometimes, I would like the things I see to be a little more warm and fuzzy. And now even the pavements I walk at night are spiked with cold white.

I pretend I don’t care about wearing sunglasses so often. I affect the kind of nonchalance that says I’m merely (neuro)queering my own sense of identity, femininity, disability, autistic-ness; I’m camping it up and revelling in it. And it’s often true that I am doing these things. And I really do like sunglasses. I like the way they look on my face. They’re a favourite fashion accessory, whether or not they’re also a disability aid.

But there are times when I feel deeply depressed that this is increasingly my reality. That the world at large has deemed that this is the way lighting should be, and the way our environment should be illuminated, the way it needs to appear, and that I am the one that must make adjustments. I am becoming The Person Who Always Wears Sunglasses. This is a new part of my identity, and I have no choice in the matter.

I find myself more and more frustrated that everything’s so much brighter and visually busier than it used to be. I’m no different. I’m no more or less autistic than I used to be. It’s my environment that has changed.

I just want to turn it all down. And I want my old night-times back.


[Featured image description: a grainy black-and-white photograph of a street at night, with parked cars to the right of the picture on the same side of the road as the photographer. On the opposite side of the road is a brick wall, with bushes and trees growing over the top. The scene is illuminated by the white blobs of street lighting, and the headlights of an approaching car.]

Connecting

We’re nearly at the mid-point in January 2018, and I’m only just now writing my first post of the year. I didn’t even do an end-of-year retrospective to see out 2017.

Initially, I was reluctant to do so because the final few months felt so negative. My anxiety and stress levels during Autumn and early Winter of 2017, brought on by matters entirely outside of my control that are still yet to be resolved, had put an unpleasant slant on the entire year. Besides, a lot of people I know had a rough time that year. 2017 wasn’t something I wanted to celebrate.

And then curiosity got the better of me, and I watched the video Facebook had “made” for me to summarise my year. And what did it feature? My beautiful, happy children. Plus a handful of very positive posts about things I’d done to increase autism understanding and acceptance over the course of the year. My Times Higher Education article.  Professionally, I kicked ass.  In other ways, I merely got by, but that in itself was something to celebrate.

Of course, we often self-police our own social media profiles, personae and presence, airbrushing, sugar-coating and self-censoring to project the image we want the world to see. But still, I reflected back, and realised that, on a personal level, a lot of good stuff happened to me in 2017.

I still didn’t have time to do my big retrospective, and anyway, I’m often scornful of such things. They seem so contrived, and the point at which our calendar flips over is so arbitrarily set. But one of the biggest highlights for me about last year, and something I want to truly build upon and expand in this, was connecting.

Connecting with other people like me.

I spend so much of my time trying to “spot the autistic”. And I often forget that most people I’m surrounded by are not autistic. I still often assume, because it is my reality, that everyone experiences the world the way I do. It’s only recently that I realised just how different my reality is from that of the majority, and I’m still coming to terms with this. Maybe I never will come to terms with it entirely.

I never really forget that I’m autistic – why would I want to? It’s who I am – but in those moments when I’m jolted from a reverie and suddenly remember how much of a minority we are, I feel momentarily crestfallen. How can it be that there are so few people like me? How can I have spent so much of my life alone?

Not literally alone. The “atypical” autistic socialises, networks, interacts. She has close friends and family. She has social circles. She gets things wrong a lot, intellectualises every interaction, and internally she may struggle profoundly, but still she has many connections, and many of them are meaningful.

And it isn’t that I don’t still love my non-autistic friends and family. There is more than one way to find connections with others; more than one thing I can potentially have in common with another individual or group.

There is a lot of love in my world.

But we still need to connect with people who see the world as we do. I need this, at least.

From way before my formal identification (I’m moving away from “diagnosis” as a preferred term, folks), I was connecting with other autistics online. This was valuable. Insightful. And hugely helpful.

In 2017, I began to connect physically with other autistic people.

Not all autistics like actual physical contact – I mean, in this case, touch. I’m one of those who sometimes does in some circumstances at least, but I’m selective, and also responsive. With autists far more than the rest of the population, I can usually gauge pretty quickly whether a hug is going to work or not. Sometimes, the urge to hug is instantaneous, generous, and entirely mutual. And this is a wonderful thing. That deep pressure, that warmth. It’s beautiful.

But it isn’t necessary for meaningful connection.

The best thing about physically being around other autistics, is feeling able to be myself. Feeling able to be…autistic.

Imagine a world in which you are almost never allowed to sit, stand or move in a way that is natural to you. A world in which you are forever monitoring, checking, analysing and editing your behaviour in real-time. Forever conscious that the way you naturally want to behave – need to behave – in order to feel comfortable and well in your own mind and body, may not be acceptable to others, and thus may need modifying.

And this is all on top of potential difficulties with the processing of verbal and non-verbal language, and the need to cope with potential environmental distractions, information overload, or sensory overwhelm. It’s exhausting. This is the world of the “mildly” autistic.

When I’m with other autistic people, it isn’t like that. We understand each other, we accept each other, and we accommodate each other. I revel in being able to move, speak, and emote like an autistic person, and in seeing others do likewise, unchecked.

In the past year, I’ve met autistic people. In “real life”. I’ve met up with individuals. I went to a local PARC event in November 2017. And with another late-diagnosed female Aspie colleague, I’m in the process of setting up an informal peer support group for autistic staff at work – we’re currently a very small, select group and have met just once so far, but in time I hope this will grow.

In the meantime, the two of us who are organising the group also meet separately. We have coffee, or lunch, and we talk as friends.

It isn’t just autistic people, of course. There are other people with whom I can be myself, and these are predominantly other disabled people, and other people whose brains are wired somewhat differently from the default. My network of disabled and neurodivergent friends is growing, and whilst our challenges may vary, there is a mutual appreciation of the difficulties we each face, and recognition of each other’s intrinsic worth as people.

Somebody I know who is bipolar, and with whom I delivered a well-received conference workshop on neurodiversity back in September 2017, is one of very few people I’m comfortable having lengthy telephone conversations with.  We’re very different in the way we each see the world, but he accepts my weirdnesses, and I accept his. We celebrate these things. We check in with each other and support each other.

Alongside that gorgeous, proprioceptive loveliness, firm physical hugs release oxytocin. The “love hormone”. The deep pressure of physical contact, and this surge of love, is what made me love carrying my babies in slings, and makes me dread the time when my younger child is too big to sleep cuddled up on my chest.

But the surge of love and emotional well-being can come from many forms of connection.

Here’s to much more of it in 2018.


[Featured image: two people hugging, with one person facing towards the viewer. This person is light skinned with red hair and a purple top – their arms are around the shoulders of the person turned away from view, who is blonde haired, wearing a green top. The two people are surrounded by rainbow colours, radiating outwards.]

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.]