#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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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.]

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.]

The Atypical Introvert?

extreme close-up of green glitter in a lava lamp

[Edit: since writing this post, I have come to the realisation that I was wrong in my assessment of myself as an “extrovert”, having misunderstood the definitions. However, I leave this post here as is – I’m still going through the process of learning about who I am, post-formal diagnosis, and this was me back then.]

I’m something of an all-or-nothing Twitter user. I’ve had a public account since around 2009, predominantly used for whatever line of work I happen to be in. My Twitter activity is sporadic: if there’s a CPD event, awards ceremony, conference or marketing campaign going on, I’m there, tweeting everything, drumming up support, provoking discussion, sharing learning. The rest of the time? The odd tweet about gin, tea, the temperature of the office, equality and diversity, and very little else.

In my recently-embraced autistic guise, I have another, anonymous account (although if you know me, it probably isn’t that hard to identify me). And the one thing I’ve noticed is that, Boy, there’s a high volume of autistic tweetage going on. I find myself metaphorically tripping over the sheer abundance of scattered-yet-interwoven, to-ing and fro-ing, quick-firing autistic exchanges. And fascinating and engaging they most certainly are. And there are some bloody wonderful autistic people involved. People to whom I feel connected.

Recently, a user posted something. I can’t remember the exact wording of the tweet, but it was something along the lines of “extreme introversion = high functioning autism”. A fair few folks, I seem to remember, liked and retweeted this assertion. I, however, had real problems with it. I didn’t say anything at the time, but it did get me back to something I’ve often mused upon. Am I an introvert or an extrovert?

A few years ago, a colleague and friend leant me Quiet, by Susan Cain. What an absolutely fascinating read. There was so much in there that I felt I could relate to. Sensitivity to environmental stimuli? Check. Preferring a Friday night in with a glass of wine and a book or DVD? Check. Exhaustion from social interaction? Check. Needing time on my own? Check.

That’s it, I thought. However much I appear to be otherwise, I am evidently an introvert.

Except I’m not.

I have always been talkative. Itching to put my hand up in class. Never afraid to voice my opinion. Keen to point out the error of others’ ways (my way is logical. Why would they take that approach? Seriously!) – although in more recent times I’ve dropped that particular gem in favour of wincing, cringing, quivering, or making squealy noises, or – on very rare occasions when I’m not too tired – tactfully suggesting that they might want to look at an alternative.

An over-sharer of personal information. Always eager to join (butt?) in with a conversation. Almost incapable of embarrassment (in certain situations, that is. More of that later). Bossy, at times (I hate the word “bossy”. It’s grossly overused in relation to girls and women. But that particular rant is for another day). Always the leader in group work at university. Happy to facilitate a discussion. At times, it’s difficult to shut me up. Interrupt me and I’m occasionally furious.

This all puzzled me. What, then, was I? Was I some kind of ‘atypical introvert’ masquerading as an extrovert? Certainly, many of the things introverts apparently feel were things that I, too, feel. But nope. It didn’t. Quite. Fit.

You see, I had the feeling I was pretending. Putting on an act. And this feeling was well-founded.

I loved drama as a child – I loved performing, putting on voices and accents, assuming another persona. In my recent professional life, I have done a lot of teaching, training delivery, and public speaking. And, if I do say so myself, I’m pretty bloody good at it. The observations I underwent for my teaching qualification got glowing feedback. Presentations I give at conferences and other external events are often tweeted about, and often result in a flurry of interested ‘after show’ questions from other delegates. But I was absolutely bloody awful at all this a few years ago. Stammering, stuttering, uncertain; freezing at the slight hint of an interruption or distraction. I decided to ‘pretend’ – both to myself, and others – that I was confident and knew what I was talking about. Over time, with practice, that pretend aspect of my professional self became real. I became knowledgeable about my material, and I continue to add to this knowledge and experience. I grew confident in my delivery. I experimented with new techniques and realised I could comfortably vary my approach, and making things more interesting. Last year, I co-delivered a workshop to nearly 1,000 undergrad students, and I wasn’t remotely fazed. I genuinely enjoy doing this stuff these days. I’m in my element, because, these days, I’m the expert – these days, I know my stuff, I’m well-prepared; and any questions thrown at me are likely to follow particular patterns that I can deal with without bursting into tears or freezing on the spot.

So I had the feeling I was pretending, and indeed, this really was something I was doing. But my interpretation of the origins, the motivations, and the directions, of that pretence were somewhat off.

Truth was, I’d been doing a lot more pretending than even I realised. I wasn’t merely an introvert pretending to be an extrovert. I realised that, actually, I am an extrovert. Just not a neurotypical one.

I was never completely content with being on my own at all times. Sure, there were times when this was absolutely the right thing. But in general, I liked having friends. I wanted friends. I was weird, and didn’t really feel an affinity with the popular kids, but I wasn’t shy or keen to remain quiet.

As a kid, I preferred the type of social activity that involved doing something. Girl Guides; bell ringing; a brief spell in a Christian youth group before I turned forever atheist. Playing music in groups was perfect, because it allowed for that communality, interaction, and sense of shared purpose, without me having to bother with a whole load of social niceties. Later, however,  I wanted to go out. With people. To pubs, clubs, gigs, festivals, and all the sorts of thing young, gregarious, sociable people like doing lots of. I drank alcohol. A lot. I laughed, shouted, talked nineteen-to-the-dozen, danced, snogged boys, fell over…and at times (many times), I made an enormous, great fucking fool of myself.

But the truth was, I never had the desire to stay on the edge. Socially, however much of an outsider I was, I wanted to be in on the action. Fear of missing out? Oh yes. In spades, my friend. And so I observed what others did. How they dressed. What they said. The things they talked about. And I learned to act like them. And yet I often got it wrong.

I would misinterpret friendliness for flirting, and vice versa. And boys and men would do the same to me. I would cringe at how unsuccessfully I’d played the role of indie-pop vinyl junkie, hardcore punk, or jazz aficionado. I would wonder whether my mask had slipped.  I would come home after a night out desperately wishing I hadn’t revealed my innermost secrets to a handful of recent acquaintances. Dissecting and post-match-analysing those times when I’d droned on, and on, and on, and nobody had stopped me, and yet somehow the conversation had drifted away from me.

And yet, it never put me off going out. I never got any sense of ‘pre-going-out’ social anxiety. Of course, I’d rehearse conversations in my head on the walk into town or the drive over to a friend’s house. I’d run through the logistics and practicalities of the night out. And all the while the social occasion was happening, I’d have that endless, meta-analytical inner voice analysing and commenting upon everything that was panning out in front of me, telling me what was going on,  (sometimes wrongly) categorising the nature of the interaction, instructing me as to how to react or respond. That voice that I still hear today.

Exhaustion from social interaction came along more as I get older. My life got busier, and more intellectually demanding. I had less downtime. In some ways, I guess I grew up (in circumstances, if not in personality). There was simply less room in my life for socialising, and less downtime meant I got tired more easily. And that’s where I’m at today.

But I’m still talkative. I still enjoy social interaction. It has to be planned – I get horribly flustered by unexpected, spontaneous socialising. It interrupts my vision of how I saw my day panning out, however much I like the other person. I resent it. And however much that type of interaction might be enjoyable, pleasant, I’m still trying to get away, to get back on track with my original plans. And I’m far better at talking than I am at listening. Listening was, is, and always will be, something I find difficult. But as long as I have some some control, I love a good chat.

Because I’m not an introvert. I’m an autistic extrovert.