#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. 18: Robots

Portrait orientation fineliner pen drawing of 28 brightly coloured robots of various sizes, shapes and types, with a range of facial expressions and poses. This is not a ‘scene’ but a series of individual images - the only background is the page on which they have been drawn.

You’d think, wouldn’t you, by now, that the stereotype of autistic people as emotionless, empathy-devoid, monotonous-voiced beings with no inner life might have been chucked out of the window forever. But it still seems to persist, even as we work to change the narrative.

I am fully human. My brain is simply a different machine from that of a neurotypical person.

I do quite like robots, though.


[Image description: Portrait orientation fineliner pen drawing of 28 brightly coloured robots of various sizes, shapes and types, with a range of facial expressions and poses. This is not a ‘scene’ but a series of individual images – the only background is the page on which they have been drawn.]

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.]

Why I “can’t possibly be Autistic”, Reason #3: I’m not THAT rigid, right?

Over a decade ago, when I was working as a low-level administrator in a university student support unit, I remember a student who was a regular and frequent visitor to our service. He came in virtually every day. He spoke in a staccato, “mechanical”-sounding voice. He always wore the same choice of clothing: blue outdoor coat; dark tracksuit bottoms; white polo shirt. In all the time he was studying at that university, I never remember him wearing anything different.

I was, and am, nothing like him, right?

My mum used to work with a boy who ate Chicken McNuggets every day for lunch. Always the same number of pieces, heated to the same exact temperature. The local McDonald’s staff knew him well, and understood what he wanted, and needed.

I was, and am, nothing like him, right?

Whatever I watched, heard, or read about autism, I couldn’t relate to. I was nothing like these men and boys.

As a child, I never had visual schedules. I enjoyed back then, as I do now, a wide variety of tastes, textures, and types of food. I didn’t wear the same thing everyday; nor did I want to. My days were not uniform. The same thing didn’t happen every day. Nowadays, I get easily bored of too much of the same.

People like me can’t be autistic, right? We’re not that rigid, right?

…right?

But the reality is far more complicated, more nuanced, than it first appears. 

I remember the time when my secondary school switched to a fortnightly rather than a weekly timetable. The fact that I had to remind myself which week I was on; the fact that I couldn’t neatly draw out my timetable in my planner without having to devise a “system” to neatly display both timetable variations – these things bothered me immensely. I could never quite escape the vague sense of unease about the inelegance of the arrangement.

Then there’s my extreme (internal. I keep it well hidden) perturbation whenever my regular fitness instructor isn’t working and someone else is covering the class. To the point where, at the moment, I’m not doing my favourite weekly Body Max session because I know the instructor is recovering from surgery. I’ll just do my own workouts until I spot her exercising in the gym between classes, and can find out for certain that she’s back in charge. 

And then there’s the fact that (and I’ve quote-unquoted my dad on this before) drawing was “the only time I was ever truly spontaneous”. Everything else in my life had to be rigorously planned. Prepared for. Structured.

That’s still the case today. It’s why I struggle with keeping momentum at work during university vacation time, and why I often experience sudden bouts of acute depression when I have too much time on my hands if I’m on holiday.

The routine isn’t there. There are too many individual, on-the-fly, ad hoc decisions to be made. There’s not enough structure, and so I struggle to keep the chaos of the world around me at bay.

There are countless other examples of my need for rigidity. It’s ingrained.

Right now, I’m going through a horrendously uncertain period at work. Nothing about me personally, but the details of which I’d rather not go into here. Partly because I, and those around me, don’t actually know anything. But it’s preventing us doing properly all the things we should be doing as part of our regular jobs. We’re hamstrung. Stymied. 

Not only is my anxiety heightened because of so much uncertainty, ambiguity and unpredictability; the regular structure of my daily and weekly work has been disturbed.

So I’ve imposed my own structure.

I’ve blocked out every day of every week with repeated, regular chunks of specific types or topics of activity. I’ve thought about what I work best on when, and organised a “timetable” accordingly. What I may be doing in each time-chunk may vary, but knowing, for example, that most Mondays and Fridays I won’t have any meetings, that I deal with anything to do with our Salesforce database on a Wednesday afternoon, and that Tuesday and Thursday mornings are my designated times for dealing with difficult email correspondence, certainly takes a load off my beleaguered mind.

My context-based Google task lists fit neatly with this structure, and I try and plan meetings to fit in too – recognising, of course, that sometimes I will need to switch things around. But even with the understanding that some flexibility is needed, I have, at the very least, a framework. Everything’s not quite so gapingly uncertain.

More recently, I’ve been having a go at bullet journalling. It’s early days, but so far I’m loving it, and this analogue, paper-based system integrates surprisingly well with my digital organisational tools, whilst also thankfully taking me away from so much screen time. I’m sure I’ll write more about it at some point…

A fellow autistic woman at work talked to me about how being organised is not a natural trait but a coping mechanism, and I’m certain this is true of me too. Many of us have to work really, really hard at organising our work, our lives, and our minds, simply to keep our heads above water and not drown in a sea of too-much-information.

But the initial effort of introducing some structure is something worth doing.

Amidst the chaos and uncertainty, a little rigidity can be lifesaving.


[Featured image shows a screenshot of the first result of a Google search for a definition of the word “rigid”]

I’m not “gifted”.

[Author’s note: I’m kind of less happy with this article the more I reflect upon its subject matter. I fully acknowledge it’s not entirely credible from an ‘academic’ standpoint – I kind of didn’t get what “gifted” meant in technical/clinical terms. I’ve had a few conversations with folks more tapped into the research behind, and personal experience of, “giftedness”/asynchronous development/twice-exceptionality and so on, and I realise things aren’t as clearcut as I thought (and actually, there are ways in which I, myself, DO fit this profile). Still, this piece is mostly about emotional response. And in that respect, most of it still stands.]

[Trigger warning: discussion of ableism, and mention of applied behavioural analysis (ABA). Also a hefty dollop of snark, because, well, this topic brings that sort of thing out in me.]


A few weeks ago, a friend shared on Twitter a very annoying graphic she’d come across in a parenting group, featuring an acrostic using each letter of the word “Aspergers”. Now, I could write a whole series of posts about all the separate problems I have with this image, but my fellow autistic Tweeps have those things pretty well-covered, so I’ll just focus on one.

Gifted.

I’m not gifted. I’m bloody clever, certainly. I’ve always managed to succeed academically – for many years with comparably little effort, until it got harder in secondary school as I got older and life made things a little too complicated for me to easily focus and apply myself.

I’m not gifted. I am, however, bloody good at some stuff. Some of it is natural ability – I was drawing far more accurate depictions of human beings at the age of three than pretty much any other preschoolers I, my parents, or anyone in their extended familial and friendship network knew of. Even so, with anything I’m good at that I was naturally able at, I’ve worked hard to shape, hone, and nurture through conscious effort. Hard graft, if you will.

(Not always willingly. I had some natural talent at playing the trumpet but only got properly good at it through playing very regularly and frequently in orchestras and bands. Intentions to diligently practice at home fell victim to my procrastination demons. And as for the visual arts, well, my lifelong – until the age of sixteen – intention to pursue a career in such a field got thoroughly shat upon by a terrible GCSE Art experience that forever tainted that particular special interest of mine. You never forget a good teacher. Or a bad one.)

I’m not gifted. And neither am I a superhero.

I don’t actually mind using the notion of super powers to encourage autistic and other disabled or otherwise neurodivergent children to value, own, and be proud of the strengths that might come with their particular way of being. But for me, it’s not logical to call those strengths “super powers”.

Yes, I have awe-inspiring pattern-finding abilities, super-acute visual and auditory processing capabilities, and sensitivity to even the slightest touch. I can detect many things that others around me cannot see. My capacities for imagination and longterm memory are vivid, multisensory, and three-dimensional. These things feed into my attention to detail and research abilities, my capacity for creativity and ideas generation, and – when I’m not tired – make my view of the world an utterly beautiful one.

My reality would seem, to someone who isn’t autistic, an augmented reality.

But none of these things are super powers. They are just a simple fact that comes of having a brain with vastly more synaptic connections in some key areas, at the expense of “underdevelopment” in others. They just…are.

So when, on the very rare occasion that someone, in a condescending tone, tells me I’m “brave”, “inspiring”, or, indeed (and yes, it has actually happened), a “superhero”, I get pretty riled.

But back to giftedness.

This usually just means “being really good at something”. And one beef I have with the word “gifted” is that it implies that any strengths or abilities that we have are simply freakish aberrations; artifacts in a stream of codified disorder, deficit and deficiency. They can never simply be thought of as things we got good at through hard work, dedicated learning and application, or just natural strengths associated with our particular character, personality, or neurotype. Oh no. They’re “gifts”.

But another problem I have with the word, especially as it appears to be used on the image shared on Twitter but also more generally, is that it implies that unless an autistic person is “gifted” – blessed with some extraordinary “super powers” – they aren’t valid, and there’s no real point in their existing. (See also savant abilities.)

This is dangerous. Autistic people, in descriptions, are often reduced to a list of “symptoms” (I’ve bemoaned this before), and the narrative leads towards an implication that that’s all there is to us. Let’s not forget that Ivar Lovaas, the founder of that aversion-therapy-for-autistics that is applied behavioural analysis (ABA), considered autistic children not even to be fully-formed people. They had to be moulded into such.

But yeah, it’s okay for Aspies, because they’re “gifted”.

Neurotypicals get away with being ordinary or unremarkable. They are the default. And whilst there’s increasing pressure on so many people in post-industrial societies to strive for the best, and continually excel (a paradox if ever there was one), it’s still a darn sight easier to be average if you’re of the predominant neurotype.

But what if we framed it the other way round? Dr Luke Beardon does this very neatly. Neurotypicals have their impairments too, you know.

And just like we amazing, inspiring, courageous autistic and neurodivergent superheroes, neurotypicals have their very own “super powers”.

Look at you, with your ability to read and respond to a social situation within conscious effort! Aren’t you amazing! Your ability to cope with interruptions is so inspiring! I’m totally in awe of how you continue to be so unerringly polite in the face of awkward or even infuriating interactions with others! Your ability to multitask, and also to sit still, are utterly astounding!

You’re my hero!

The truth is, we all have strengths and weaknesses. It’s just that some combinations of these tend to be pathologised; others do not.

And another truth is that someone of any neurotype can be unremarkable. Ordinary. Average. And that really is okay.

None of us should need to be “gifted” to be permitted to be ourselves…or even to exist.


[Featured image description: a bright green Moleskine notebook with elasticated strap, and ribbon bookmark just visible, laid flat against a black background. A pair of glasses is folded and laid on top of the book.]