#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.]

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#AutismAcceptance/#AutismAppreciation doodles ‘n’ scribbles no. 3: ‘Many Guises’ quadriptych

Quadriptych cartoon portraits of Mama Pineapple, a white female-presenting person. In each, she wears a dramatically different outfit, and has hairstyles of various lengths and colours.

I’ve played around with my appearance a lot over the years. I’ve had a lot of fun with clothes, makeup, hairstyles and accessories. I used to think my changing appearance was symptomatic of not having a clue who I was, but on reflection I don’t think it was as deep as that. Part of it was the attitude of “well, everyone thinks I’m weird anyway so I might as well play up to it”. Part of it was simply about self-expression and fun. I don’t really follow fashion, but I do find it fascinating.

After a period in my early-to-mid-30s of feeling a bit drab, I’ve ramped up the self-expression once again since my autism diagnosis. Anxiety aside, I’m far happier with myself now than I’ve ever been before.


[Quadriptych featuring cartoon portraits of Mama Pineapple, a white female-presenting person. In each, she wears a different outfit, and has hairstyles of various lengths and colours. Left to right: pink-hair-grip-, plastic necklace- and vintage shirt-wearing short haired 1990s indie pop kid; punk grrrl with white shirt, grey pinafore, spikey pillarbox red hair, full eyeliner, and safety pin through one ear (c2000); somewhat more conventional look from early 2010s, with long dark hair, minimal makeup and a striped polar neck jumper; present day – mid-length red hair pinned to one side, vintage 60s black lace blouse, dramatic winged eyeliner.]

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 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.

Another like me?

This blog isn’t an “autism parent” blog. I use this site as a place for my own catharsis, and for information- and experience-sharing. Nevertheless, I am a parent, and that part of who I am will, at times, feed into what I think and feel, and, thus, what I write about. I am also an autistic parent, and now my family has new knowledge.

Two days ago, my four-year-old daughter received – as I did, two months ago – a formal diagnosis of Autism Spectrum Disorder (deemed synonymous with Asperger Syndrome). Like me, she’s #actuallyautistic.

Unlike many parents of autistic children, I do not feel a hint of “grief” at this news. We had a feeling; we did research (in my case that very intensive, exhaustive, and in-depth research that comes of being someone of my neurotype); she had an assessment; and our feeling was confirmed. This is who she is. She is both wonderful and annoying, just like all four-year-olds. And being autistic is part of her identity, her personhood; it always has been. We’ve not been robbed of anything.

Do I feel an added pressure? I share a similar neurological profile to my girl. Am I then to be her primary mentor? Well, I am her mother.

We are alike in so many ways. So often I see myself in her. And – as it would be for any parent whose child is, to some degree, like them – this is a double-edged sword.

It’s all too easy for us to live vicariously through our children, or try to turn them into “improved” copies of ourselves – foisting our own interests upon them at the first vague hint of curiosity; drilling them to do better at something at which we feel we missed the mark.

She has received her diagnosis, thirty-two years younger than I received mine. Her life, and her knowledge and understanding of herself, will inevitably be different.

But then, of course her life will be different.

Because she’s not me.

Like all children, she is her own unique and beautiful self.

I will have insights into some of the ways she thinks and feels that some in our family do not share. I’ll be able to put myself in her shoes in a way that others in our family cannot do. I might be able to explain things to her in a way she can understand, better than those around us. And I can provide insights to others that might help them to understand both of us a little better.

Because autism is intrinsic to who we both are.

But…

We also have the many layers of identity, circumstance, experience, and personality. No two people are the same, and she – like her brother – will also learn so much from others around her.

It’s wrong of me to think I would ever have all the answers to how to be a parent, just because I share the same neurotype as my child. Just as it’s wrong of any parent to refuse to try to understand a child who is fundamentally different from them.  Whoever we are as parents, whatever our neurotypes or those of our children, we must allow them to learn from us, and we must also learn from them.

I’m just glad she has that chance of self-knowledge, and the opportunity of support and understanding, at an age when these things can, potentially, make a positive difference.

So that she can truly be her own person, and – or so, at least, I hope – not spend a lifetime trying to be someone else.