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.]

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One year on

It’s a whole month since I last wrote a blog post, which seems an awfully long time. A couple of weeks ago, I celebrated one year since it was formally confirmed to me that I’m autistic. I’d been intending to write about it around the date of my “autiversary”, but I’ve been pretty short on time recently. And now it’s a while after the fact, and whilst I’d like to write some kind of lovely creative piece, the truth is, I need to get myself back into swing of things by doing a bit of self-reflection. This post is probably going to be more for my benefit than for anyone else’s, therefore.

A year since diagnosis seems a far more apt time to reflect than the arbitrary calendar shift that occurs from December to January. An autism diagnosis, for an adult-diagnosed autistic person who’s spent most of her lifetime not knowing such a fundamental fact about herself, is a pretty bloody significant milestone to mark.

A lot has happened to me in recent months, autism-wise. Back in May, I had an article published in the Times Higher Education Magazine about my experiences as an autistic student (albeit undiagnosed at the time), and education developer. It was a re-working of a post on here, and the response to it was pretty overwhelmingly positive. I’m now in touch with a fellow late-diagnosed autistic woman in my institution, and we’re looking into setting up some kind of peer support group for autistic staff. Before that actually happens, I’m just looking forward to having coffee with her, and just “being autistic” with someone else who understands.

Last month, I took part in an awareness event organised by our Medical School, featuring a performance of an original play on autism and being different by Spectrum Theatre Sheffield. I took part in the question-and-answer/panel discussion that followed the performance, alongside members of the cast and a (neurotypical) representative of a local charity (who I won’t exactly say hogged the discussion, but, well, never mind. On the whole, it was all bloody fantastic).

In September, I’m running a workshop with a bipolar colleague on neurodiversity and enterprise education at my field’s biggest annual international conference.

I’m open about being autistic. I’m out there. I’ve added the #ActuallyAutistic hashtag to my work-focused twitter profile. It’s a risky business, but to me it makes complete sense. I can’t be other than who I am – and once you realise who you truly are, after not understanding for so long, how can you ignore it or turn back?

And I’m lucky to say that only very rarely has anyone looked down on me or patronised me (I might write something about this at some stage, but I’m staying upbeat for now). Most people seem to be politely interested. Perhaps that’s simply a reflection of the circles I move within.

I’ve experienced nearly a lifetime (so far) of self-doubt, faltering and dissolving confidence, impostor syndrome, and inferiority complexes. I’ve never been “good enough”. And even though my diagnosis has been liberating, it’s also made me put myself under the microscope once again, scrutinising my past experiences, behaviours and reactions anew. I sometimes find I question my actions in a far more extreme way than ever before, despite my determination just to relax and be myself more than ever before. But this has also been one of the most God-damned life-affirming, validating years I’ve ever had, from a professional and personal perspective (let’s just ignore world events for now, yeah?).

I’ll probably reflect separately on positive work stuff and the cool things I’ve learned recently about how my autistic brain works, but for now, it’s enough to say that I’m not special. No-one is. But for all the challenges I’ve faced, the traumas and indignities I’ve suffered, and the pain I’ve endured, I wouldn’t change who I am. I actually like who I am, right now. It’s taken a long time to get to that point, but I’m here now.

And I can keep moving forward, whilst valuing the world I’m in right now.

[Featured image description: park on a bright sunny day, with blue sky, people playing, sitting, or lying on the grass, colourful flowerbeds and lots of trees.]

The same crap, on top of everything different

[Feature image description: close-up view of the trunk of a Weeping Willow tree, viewed from behind the metal railings of a bridge, diagonally leading away from the bottom left to the top right of the image. The tree is resplendent with masses of bright green leaves hanging downwards. Behind the tree and its branches, a calm river, with a grey stone wall on the opposite bank, is vaguely visible. Photo taken in the grounds of University College Cork.]


A couple of months ago, I was away presenting a session at a conference in the Republic of Ireland. I’m a very infrequent traveller, especially abroad, and so I was pretty pleased with how I got on with getting there. Okay, I allowed far too much time between taxi to the railway station and my train’s departure time, and far longer than necessary at the airport before my flight, because I get anxious. Air travel is an unfamiliar activity for me; I wasn’t sure what to expect, I hadn’t travelled from this particular airport before, and I wanted to allow for any unexpected incidents, occurrences, or disruptions to my itinerary. Getting anywhere “just in time” leaves me stressed, agitated, and liable to meltdown at the smallest trigger.

I had the luxury of a day to myself before the conference. Time alone is something I crave, and rarely get. I had a glorious afternoon walking extensively, visiting art galleries, exploring the streets, sampling the food. A lingering bath in my hotel room. Uninterrupted time to read a book. To say that this was refreshing and rejuvenating would be the biggest bloody understatement imaginable.

That evening, there was a pre-conference drinks reception.  Finger foods. Lots to drink. And my God, I networked like a pro. Like a boss, as goes the modern vernacular.

The next day was a full day of workshop sessions. The conference was deliberately “unplugged”, which meant no tech, no PowerPoint, no videos. Delegates had been asked to read papers in advance and be prepared to focus on discussion when in the sessions. The emphasis, therefore, was on listening, and on spoken interaction. I had one session to chair, and another to present. By the end of the day, of course, I was tired. My employers had only paid for me to attend one of the three days, but that in itself was pretty demanding.

Despite the intensity of those two days, I managed well. I enjoyed it. And I had a day off work once I got home to sleep, rest, and recuperate. But throughout it all, there was one thing that bothered me. That angered me.

And it had nothing to do with work, or autism.

It had nothing to do with poor wifi coverage, extra high sensory demands, or fellow presenters not adhering to the strict guidance about the format of the sessions. It had nothing to do with exhaustion, anxiety over social interactions with strangers, or the fact that, upon setting up for my own session, I realised I hadn’t brought some of my kit with me (don’t worry folks; it was nothing essential, and I coped well regardless).

No. It was none of those things.

You see, I have no full-length mirror at home. And so I often move around blissfully ignorant as to how my clothes fit my body, how “thin” or “fat” I happen to be looking on any given occasion, or whether what I’m wearing is flattering or otherwise.

From time to time I do glance at my reflection in shop windows, or the ground-to-ceiling glass panels of modern office blocks (pity any poor person sitting on the other side; but then, they’re probably used to it). And I’m quite particular about clothes and how they look on me.

But a full-length mirror is just one of those things we haven’t ever got round to buying.  The house my husband and I have lived in since late 2006 still resembles a tatty student dwelling. We’ve updated some rooms, but now that we have small children, and a distinct lack of spare funds or precious spare time, much of our home resides in a state of notable dishevelment. Our bedroom doubles as a storeroom, our toddler son is also still in with us a lot of the time, there are other bits of the house we need to work on before we get round to our so-called master bedroom, so buying a pristine new mirror isn’t exactly high on our priority list.

So occasionally I get caught out. Often it’s when I see myself in photos, captured unawares. But that evening, it was a mirror.

Before heading out to the conference drinks reception, I bathed, got dressed, did my hair and makeup, and all the usual “getting ready for an evening out”-type things. I looked in the full-length mirror of my hotel room, to check all was to my satisfaction.

And I looked again, aghast.

I had had no idea how fuzzily undefined my waist appeared in my chosen outfit; how much it merged with my hips; and how much my thighs merged onwards and upwards in the opposite direction. No idea how seemingly vast was the expanse of my (not actually that enormous) belly. No idea just how small and out-of-proportion my bust appeared in relation to everything else.

And to think – oh, silly me – that I’d been pootling about quite happily in this outfit on numerous occasions, enjoying the many textures, patterns and colours of the details on that tunic top, thinking I’d looked okay in it! What must have possessed me? How dare I?

And then I got angry.

Here I was.

A professional woman, here to deliver a workshop based on the highly acclaimed work of my team, its submission accepted on merit after being rigorously assessed by a judging panel. A woman with two university degrees, a postgraduate teaching qualification, and senior fellowship of a national professional body. A wife of a loving husband and mother of two wonderful children. A person with many friends. A writer of words which, on the basis of comments and messages I have received, have resonated with so many. Someone with wayward biomechanics, anatomical oddities and congenital joint abnormalities, and with limited time to exercise because of a full-time job and young children, who has somehow managed still to maintain a fairly decent level of fitness.

And on top of that, I’d achieved everything I had achieved despite years of confusion, torment, anxiety and depression, living in a word that wasn’t build according to my needs; twisting, bending, and contorting my very being to try and fit into a space that was an unnatural fit to me. 

And here I was, worried about my bloody appearance.

Like so many women, I’d spent a lifetime trying to do the same thing to my physical body that I had been doing for so long to my behaviour, my outward personality, and my responses to the world around me. And after all these years, after all that has happened to me – good or bad – I was still preoccupied with wanting my body to be something other than it was. A body with faults, yes. But a body that is mine, that has done so much, and that has been with me through everything.

Even after coming to terms with the life-changing news that I am who I am, that I’m autistic and that’s okay, I was still dealing with the same crap, on top of everything different.

Many autistic people do not care in the slightest bit about what others think of them. But to say that we are all this way is a gross generalisation. I am not one of these autistic people. This is one area where I cannot relate to so many of my neurosiblings.

Sadly, sometimes, I care all too much, and for all the wrong reasons. And that added layer of “womanly” insecurity on top of it all does no-one any favours – me least of all.

We can never do enough.

I can never do enough.

I can never be a good enough employee.

I can never work hard enough
I can never be organised enough
I can never teach well enough
Never quite convey my points well enough
I’m never creative enough
Never convincing enough
Authentic enough
Inspiring enough

I can never do enough.

I can never be a good enough mother.

I am never there enough
I can never be a good enough role model
I can never empathise enough
Never keep my voice gentle enough
Never hold my tongue enough
I can never stay patient enough
Calm enough
Kind enough

I can never do enough.

I can never be a good enough wife.

I am never there enough
I can never be strong enough
Never trusting enough
I never listen enough
Never laugh enough.
I never just ‘let things go’ enough

I can never do enough.

I can never be a good enough friend.

I am never there enough
I never call enough
I never send or respond to messages enough
I never think about my friends’ needs enough
I never remember them enough

I can never do enough.

I can never be a good enough activist.

I am never there enough
Never active enough
I can never write well enough
Or often enough
Never speak well enough
I never listen enough
Never understand enough

I can never do enough.

I can never look good enough.

I can never walk gracefully, or confidently, enough
Never do my hair carefully enough
Never dress well enough
Never do my makeup neatly enough
Never keep myself groomed enough
Trimmed enough

I can never do enough.

I can never be a good enough thinker.

I can never read widely enough
Or deeply enough
I can never analyse critically enough
Never pay enough attention to the facts
Never consider other points of view enough
Never compare and contrast enough
Never present my arguments well enough

I can never do enough.

Is it any wonder that I am tired?
Is it any wonder that so many of us are tired?

There is not enough of me to be everything I want to be
There is never enough of any of us for us to be everything we want to be.

Or everything we have the potential to be.

We can never often enough
recognise enough
when we are enough.

To an autistic girl

My dear, wonderful girl

You had a feeling you were different. And now you know for sure. Your brain works a little differently from those of many people around you. And at times, you don’t know what to make of that.

Does it change anything, or does it change nothing?

You’ve been given this label. You’re autistic, or you “have autism” (I’m going to use the first of these phrases from now on, but you might have heard it referred to the second way in the past).

Perhaps you’ve known about it for as long as you can remember. Perhaps your family recently told you about it. Or perhaps you’ve just been given your diagnosis firsthand.

But it may not have been the only label you’ve been given.

Childish. Away with the fairies. Lost in her own world. Space cadet. Scatterbrained.

Bookish. Shy. Nerdy. Geeky. Weird. Kooky. Quirky. Eccentric. Odd.

Naughty. Challenging. Difficult. Disruptive. Defiant. Lazy. Stupid.

Exasperating.

Some of these labels you may have given yourself. Some might have been foisted upon you by other people. Some of these labels were upsetting for you to hear. Didn’t they understand? It’s not as if you meant to be way you are. It’s just always seemed harder for you to do what comes naturally to others. Why do they seem to cope so well? How do they make just being look so easy?

I may now be grown-up, but I speak to you as one autistic girl to another. I’m writing to you because I remember, and I understand.

I remember the dread at the start of a new school day. The screaming, roaring noise of the school corridors. The flicker of fluorescent lights. The crowding. The jostling. The shrill, jarring rattle of the school bell. The searing cold of the school playground.

The desire, sometimes, to be completely alone, unbothered and undisturbed, and at other times, to be part of the group and able to talk to others in a way I just couldn’t.

I remember my utter, unbounded fascination at some subjects, and my complete lack of interest in others. I remember my feverish interest in a new idea. I remember my thirst for knowledge and desire to learn that were so much at odds with my desire simply to “fit in”.

I remember the sudden floods of tears. The all-consuming frustration when I felt clever enough to do my homework, but somehow just couldn’t get started. The embarrassment of misunderstandings, of getting something wrong, or reacting to something in a way I “shouldn’t”.

I remember going home every single school day feeling exhausted.

The thing is, back then, I didn’t have the knowledge that you now have. I didn’t realise that I was autistic. It would have explained so much.

It can be shocking to find out that there’s a “medical” reason for why you think and feel so differently from the people around you. But it can also be a useful thing to know. It’s powerful to truly understand why you are the way you are, and why “the way you are” is actually okay.

It’s okay to be different.

Perhaps you don’t agree with me about that right now, but I hope that one day, hopefully soon, you will.

And as one now-grown-up autistic girl to you, an autistic girl with so much life ahead of her, I’d like to share a few things with you.

There’s no one “right” way to be a girl.

Maybe you’re into princesses, ponies, or fairy wings. Maybe dinosaurs, reptiles, or bugs are your thing. Maybe you love sport. Or dancing. Books. Music. Coding. Painting. Writing. Lego. Construction vehicles, trains, or spaceships. Or any combination of any of these things, and much more besides.

Perhaps you love makeup and hair accessories. Sparkly things. Pretty dresses. Perhaps you like baggy trousers and hoodies. Doc Martin boots or trainers. Perhaps you love fashion. Perhaps you aim to dress as alternatively as you possibly can. Or perhaps you just need to be comfortable.

Maybe you like boys. Maybe you like girls. Maybe both. Or neither.

Whoever you are, and whatever you’re into, your version of “being a girl” is just as valid and meaningful as any other girl’s.

There’s no one “right” way to be autistic.

All of us who are autistic have some things in common. But just like any other human beings, we’re all different. We don’t all share the exact same traits, or the exact same strengths and weaknesses. The spectrum isn’t linear; it’s three-dimensional. Autistic is part of who we are, and it’s a big part of who we are. But it’s one part of who we are.

You may not be good at the things autistic people are “supposed” to be good at. You may have powers or skills that defy the stereotypes. You may have some enormous strengths and some enormous struggles. You may find everyday living immensely difficult. Or you may, quite simply, be kind of average and seemingly unremarkable.

But there will always be some good things about you. That is inevitable.

You are here, you are valid, and you are you.

Own your label.

It’s yours. Be proud of it. Be proud of who you are. At times, you way want to shrug it off, deny it, or keep it from others. That’s up to you, and only you.

Don’t think of it as an excuse. It’s an explanation. Some of us autistics are very disabled by the way our autism manifests itself. Some of us feel that our very real disabilities come mainly from living in a world that wasn’t built for us. Others do not think of themselves as disabled at all. But we can still use our label to explain.

That autistic label is still yours. Many of us, myself included, are far happier for seizing hold of that label and really, truly making it ours. I hope you will too.

Life may not always be easy.

You’re living in a world that wasn’t designed for people like you. Maybe school has already been tough, or maybe you’ve been well supported and protected so far. But there will be misunderstandings, confusion, overwhelm, sensory overload, and meltdowns, no matter how much you try to avoid them. There will be people who don’t understand you. People who don’t believe you.

Maybe you’re disabled in other ways besides your autism.

The colour of your skin, your religion (or lack of one), your name, the country you live in, the school you went to, the place you grew up… all these parts of who you are might mean that things are even harder – or even easier – for you.

But stay true to you. It’s easier to be happier if you do.

And know that there are others like you.

Maybe you’ll meet them at school. Maybe in the park. Maybe at a youth group, or maybe at a family gathering, a band rehearsal, a community event or the sports field. Maybe you’ll meet them online.

It might take a while.

But there are others like you. And they’ll welcome you. They’ll understand you, support you, and celebrate the fact that you are you.

When I discovered who I was, and found others like me, I was welcomed too.

And I welcome you.

From the bottom of my heart.


[Featured image credit: “heart bokeh2” by sure2talk. Featured image shows a large number of small, monochrome, love hearts of various hues of grey, on a black background.]