#AutismAcceptance/#AutismAppreciation doodles ‘n’ scribbles no. 9: why didn’t anyone tell me Girl Guides sweatshirts and white socks were uncool?

An 11-year-old Mama Pineapple: a white girl with chin-length bobbed brown hair, wearing a blue sweatshirt with white Girl Guides logo, floral skirt, white socks and black lace-up shoes. She has her hands behind her back and smiles.

As a kid, I observed what others wore, and mostly aped what I thought was deemed “cool”.

But there’s no instruction manual for operating in pre-teen or teenage polite society, and nobody ever tells you what isn’t cool. Sometimes in my later primary school and early secondary school years, I just liked wearing my Girl Guides sweatshirt – outside of Girl Guides meetings. It was a nice shade of blue, and it was comfortable.

And the white socks. How was I supposed to know these were unacceptable clothing items? I didn’t realise until years later what some other kids had really thought of me for such apparently ill-judged sartorial decisions.


[Image: An 11-year-old Mama Pineapple: a white girl with chin-length bobbed brown hair, wearing a blue sweatshirt with white Girl Guides logo, floral skirt, white socks and black lace-up shoes. She has her hands behind her back and smiles.]

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On meltdowns

The other day, someone on Twitter – an autistic person who doesn’t experience them – asked me what it feels like to have a meltdown. It’s not a subject I especially like talking about – I’ve attempted to write about it several times on this blog, got frustrated, and given up.

This past week, I had one of the most distressing, disorientating, debilitating meltdowns I’ve had for quite some years. Three days after it happened, I’m still exhausted. But the immediacy and severity of this recent experience gave me the language to tweet a thread about how it feels (for me at least), and it appeared to be something others found useful, so I’m expanding that string of tweets here, so it may reach a wider audience.

Bear in mind here, every autistic person’s experience is different. The following words do, however, give an illustration of what a meltdown is like for this particular autistic writer.

I’m an autist who experiences long build-ups to meltdowns, and I’ve discovered that this isn’t true for everyone. Some of my neurosiblings crash without any prior warning – or, at most, an hour or so of feeling like something is imminent. Perhaps it’s my anxiety. Perhaps my senses of introception, introspection, and the fact that I am by nature highly self-reflecting and -analytical. Whatever it is, I can usually tell I’m “due” a meltdown, even if I can’t quite tell exactly when. That uncertainty only adds to my anxiety.

It’s usually preceded by a few days of feeling “fizzy” – like a cola bottle that’s been shaken up but the lid’s still tightly on. Often in these periods, I need to stim a lot. Huge, exaggerated, full-body stims. I’m one of those autistics who pretty much stims 24/7, but these are bigger. I need to sway, rock, spin, vigorously shake my hands, windmill my arms, swing my legs, stamp, pace, clap.

If I can get out and properly exercise, I can sometimes keep the bad stuff at bay; if not, the pressure continues to build.

Usually, when I’m approaching the Actual Meltdown, I feel like everything is amplified. Especially human voices. They feel dramatically louder than normal. It feels as if everyone is shouting DIRECTLY INTO MY EARS. The sound of humans shouting is one of my biggest anxiety triggers anyway. It’s a sound that instantly sets my heart racing, stiffens my shoulders, and puts me in fight-or-flight mode.

But all speech feels like shouting when I’m approaching or mid-meltdown. And I have this sense, also, that everyone is speaking in a different language.

This “foreign”-ness is only one small part of a much bigger, more complex sense of dissociation. I feel like I’m not entirely there, like I’m in a parallel universe, but the one everyone else is in is visible to me. I’m immersed in it, without being in it. And yet, touching or interacting with anything in that universe feels as dangerous as being exposed to Kryptonite.

The build-up keeps happening. Everything gets louder. Bigger.

Closer, and yet at the same time more distant.

And then, something – one final thing – will cause the crash.

The biggest thing is crying. I’ve always been a cryer. I don’t cry at the things other people cry at, but cry at things other people don’t cry at. But my meltdowns pretty much always involve uncontrollable crying. They always have done, from childhood, through my teens, right the way through my adulthood, and that’s still the way things are today.

I feel my face getting hotter, my body starting to tingle, the tears forming. Long before it happens, but still utterly unpreventable.

There’s an embarrassment-in-anticipation. I know I’m going to be the Crying Adult. And then the waters break on the shores that are the cheeks of my face. And then the waves keep crashing in.

If the final trigger (bear in mind: the trigger of a meltdown is simply the last straw, not the sum total cause) is something a particular person has said or done, I’m likely to swear, berate, and shout at that person. I hate this. I hate being unpleasant to people. So not only must I endure the devastating embarrassment at the meltdown itself, there’s the all-consuming guilt about possibly upsetting someone.

In these times, I feel utterly terrified. Completely and utterly shocked, Every. Time. It. Happens, by my complete and utter loss of control. If anyone tries to interact with me, touch me, or even get anywhere near my personal space, I will shriek, screech, and flail my arms. I’m terrified by the invasion, the intrusion. The interaction itself highlights to me that I’ve drawn attention.

And yet I cannot use verbal language coherently enough to explain.

But I’m tortured because whilst I don’t want to make a scene or have strangers adding to the overload and overwhelm, I’m simultaneously desperate for someone to give me a massive, firm, bear-hug. To hide me, cocoon me, and shield me from the shock waves that travel from their universe into mine.

Whilst I nearly always cry, sometimes I don’t swear, scream or shout. Sometimes I simply need to run. Get out. Get away.

But even when I do this, the inner storm rages on until it blows itself out. The parallel universe that is not my own still exerts its extreme pressure upon me.

But eventually, it subsides. And then I’m spent.

All of this exhausts me. I will always need to lie down. Usually I’ll need a lot of sleep. Quiet. Darkness. And the next day, I’ll usually feel similar to how I feel the day after a migraine. Completely wiped out.

Often, I will actually get a migraine. All of this is neurological, you know.

And yet, I know the meltdown was necessary. The lid had to come off that cola bottle.

Meltdowns are hideous. And they are not the same as temper tantrums.

They’re not behaviour; they’re a neurological reaction.

A reaction to too much.

Too much change.
Too much surprise.
Too much information.
Too much stress.
Too much stimulation.
Too much worrying.
Too much interaction.
Too much time spent making oneself “acceptable”.
Too much time without sleep.
Too much energy expended.

And this is the same for autistic children and autistic adults.

The neurotypical world is hard for us. There’s much that I love about my brain, and being the way I am. But know this: we have to work hard every day to exist in a world that isn’t our own.

And so, if you see an autistic person who is experiencing a meltdown, be gentle with us. Give us space if we need it.

We suffer enough at unintentionally becoming public spectacles. Even if you don’t understand it, be compassionate. So don’t gawp. Don’t point. Don’t stare. Don’t ridicule, berate or attack us.

Don’t punish us.

If you love and care for an autistic person, notice when things seem to be getting too much. Don’t express unreasonable demands or make any but the most necessary of changes. Keep the environment as gentle and calming as possible.

And if they do come crashing down, give them time to rest and recover afterwards. They will be worn out. Emotionally, mentally, and physically. Look after them, but respect them.

And overall, be kind.


[Featured image description: a line-drawing of a white female-presenting person with chin-length hair, wearing a winter coat with fluffy cuffs and collar, holding their hands over their ears, eyes closed, tears running down their cheeks. They are surrounded on all sides by a mess of dark, painted colours, which appear to be closing in on them.]

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.]

Performance

I’ve been something of a performer all my life.

At primary school, it was drama. I never got to be the heroine or the pretty princess, but that didn’t bother me (mostly). Gleeful, gorgeous, grotesque riches were bestowed upon me in the form of ‘character’ parts: witches, ghosts, and anyone requiring an accent. I got to play around with voice, mannerism, posture, stature and facial expressions in ways that I found utterly delicious.

The move up to secondary school ushered in a small fish:big pond tale of bit parts, walk-ons, clumsy full-cast dance scenes and dressing-room boredom. I was never simply “glad just to be involved”; I wanted to act, damn it.

And so music took over. After a brief spell contending with the solitary, arduous torture of beginner piano, I plumped instead for the trumpet. You couldn’t escape it. You could play it in all kinds of genres. And you could play music with other people, in actual bands, before you actually even had to be any good at it.

The loudness was the point. I loved the fact I couldn’t hide; or rather, that I could hide myself behind that brazen, brash brass instrument. I could be the centre of attention, without the audience’s attention being solely centred on me.

Performance did, however, extend way beyond theatre and music.

Every day was, and is, a performance.

I’ve rejected any early-in-my-identification-as-autistic notions that I ever “masked” my autistic traits. I wouldn’t have had a clue what on earth I was trying to mask, for starters. It was pretty apparent to a lot of people that I was a bit (well, a lot) weird.

Still, perhaps stage makeup is a mask, of sorts. I performed the role of a girl. A proper girl, like all the others. I wasn’t trying deliberately to cover up aspects of my own self; I was simply playing the same role I’d always believed others also had to consciously “act out”.

I didn’t do it with uniform, or universal, success, of course. There was so much I simply didn’t get about being a proper girl. And yet. The tone of voice. The mannerisms. The (only partially feigned) interest in beauty and fashion. The purchasing of teen girls’ magazines. Shopping. The fancying (at least romantically) of boys at school. All that I could sort of manage.

But it still felt bewildering. And never quite real.

I was far more comfortable with the mixed-gender groups of friends I knew outside of school. My gaggle of gig-going buddies. The fellow musicians in the district orchestra and concert band. People with whom I could bond over genuine shared interests, irrespective of each others’ gender.

I was never a boy. I never felt like one, nor ever wanted to be one. I was never even a tomboy.

But still I struggled to perform the role of the normal girl.

And yet, as an adult, as people wanted to call me a woman, so I wanted to continue being referred to as a girl. “Woman” felt like someone else. I disliked “Miss” but rejected “Mrs”, or my husband’s surname, when I married – again, “Mrs” didn’t sound like me. It sounded too…grown up. Old, even. It still does.

(I go by “Ms”. Part of me occasionally gets half-tempted to switch to “Mx”, in part to annoy the people who don’t even like “Ms”. But my life is complicated enough already, what with me being openly autistic and everything. I just wish people would always use first names and nothing else, really.)

I don’t have problems with being a mum, or being called one. That one fits.

But I still feel like I’m always performing a role. Playing a part. The competent adult. The consummate professional. The confident parent. I even struggle to understand how to properly be an adult child to my parents. That script can be particularly hard to read.

I don’t feel as if I “perform” the role of friend. I care too much about friends, and friendships, to be anything other than as genuine as I know how.

Everybody performs. We all switch personae according to context, situation, environment. And most of all, who we’re with.

But we autistics so rarely get to take off the costume and be fully ourselves.

So often, the very way in which I’m openly autistic is in itself a piece of performance art. I could easily dull the sensory impact of bright lights with a very discreet pair of shallow-framed tinted glasses. But no; I walk into conference plenary sessions wearing oversized vintage-look shades. I revel in doing so. I could subtly stim in work meetings by playing surreptitiously with my engagement and wedding rings, or the cuff of my sleeve. But no; the Tangle is in my hand, and my hand is on the desk. So often must I write, rehearse and memorise the scripts for my many upcoming performances in the role of the pseudoneurotypical woman, that I grab any chance I can get to “be autistic”.

And when I’m out and about, I confess it: I play up to the camera.

I flick, fidget, sing, hum or nod my head to the music on my mental jukebox more obviously in public these days in part because I don’t give a bloody hoot about who objects to my doing so, but also because, deep down, I hope another autistic person is nearby, noticing.

I’m an actually autistic impersonator of an actually autistic person, performing an exaggerated version of my true identity for dramatic effect. It’s freeing. Liberating. Fun.

But it’s merely signals and signifiers. Camping up a stereotype. It’s real, but it’s not the full story.

I’m at my most autistic, under normal circumstances, when I’m at home – either because I’m tired, stressed and meltdowny, or because I’m being a kid, with my kids, and able to play. And when my daughter and I go on makebelieve adventures, we are always ourselves, wherever we travel to.

But I’m only ever able to be truly autistic, without the added dramatic effect, or even affect, when I’m with other people like me. And that’s rare.

Performance can be enjoyable. Joyous, even. But sometimes I need to remove the layers of panstick, and just be me.


[Featured image by Arch’educ. Image features a wooden theatre stage. A deep red curtain hangs closed over the stage, touching the stage floor.]