#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.]

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.]

A line has been crossed.

As I wrote in another post a while back, sometimes it hits me.  And this morning it really, really hit me.

And I did something I’ve never done before.

Since my official diagnosis, exactly two months ago today, I’ve been – as usual – in numerous situations at work where I’ve been required to ‘network’. Communicate fluidly, fluently, and with facility. Be my best interacting self.

Two weeks ago, I was away at a conference for three days. I networked furiously, contributed to discussions, tweeted insightful nuggets of wisdom against the official conference hashtag from my professional Twitter account, drank wine, danced my ass off at the gala dinner, and successfully co-presented a workshop session (I have no qualms about teaching, presentations, public speaking or the like. I very rarely even get nervous. I’m usually well-prepared, and I’m usually the expert).  It wasn’t until the train journey home that I mentioned to anyone that I was autistic.

(That ushered in a fascinating in-depth exchange, lasting the entire journey, with the fellow delegate I was travelling with. But that’s an aside.)

My department colleagues all know. They’re supportive. They were making ‘reasonable adjustments’ for my needs before I’d even got a diagnosis; before my ‘problem’ even had a name. When I did announce my label, it was all cool.

But today,  I entered new territory.

A three-hour-long planning workshop. People from four different departments. A small room for the size of the group. Hot, stifling, crowded, and cramped. A packed schedule of group discussions, with activities planned to keep us busy even throughout the coffee break. Fluorescent lights. Construction noise outside. Some machine or other outside that occasionally issued an irritating high pitched “beep!”. Occasional moments where I was put in the spot to answer questions about services delivered by colleagues in my team about which I had limited knowledge.

And all of this when I was tired from being a parent of small children, from limited sleep, and from the fact that this time of year is kinda busy for me at work. My brain already works overtime, every day. And right now there’s overtime on top of the overtime.

For most of the morning, I managed. But gradually, my anxiety levels built up. I knew I had only a short window to do another piece of work before I’d be in another meeting all afternoon. I was frantically trying to interact with these colleagues whom I hardly knew, worried about how I might be coming across, whether my mannerisms were odd, whether I was being too controlling, or too awkward.

And all the time, getting hotter and hotter, more and more uncomfortable, more and more overwhelmed. I could feel the tears starting to build up; not quite yet breaking through.

And half an hour before the end of the workshop, I said it. To the people on my table. Colleagues, but ones whom I hardly knew.

“I’m really sorry. I’m autistic, and I’m starting to get overloaded. I think I’m going to have to leave now.”

There. The first time I’d been up front to people beyond my immediate team, and in the immediate context of a particular work situation.

I wish I hadn’t felt the need to utter the word “sorry”. I still couldn’t help being embarrassed. I hope that’s something that I eventually learn to get over. But I felt I had to be honest. Why make up a lie – or a euphemistic, veiled reason for leaving? Better this than bursting into tears.

I’m not sure what they’ll have made of it. One of the people came out with me, sat with me for a while, and helped calm me down (she had relatives who are looking into whether they might be “on the spectrum”).

The others on my table might have found it odd. Awkward. Uncomfortable. But maybe, later on, they might think back and wonder. Possibly do some finding out. Or maybe not. Who knows?

But I have been honest.

A line has been crossed.