#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.]

Advertisements

#AutismAcceptance/#AutismAppreciation doodles ‘n’ scribbles, no. 19: Easily Distracted

Black and white felt tip drawing with two panels. PANEL 1 (left-hand side: two female-presenting people, walking along - one is talking to the other (“so anyway, she was all, like...?!”), who is distracted by something(“Oh look, a squirrel,”). PANEL 2 (right hand side): the same distracted person is at her computer, but is looking away from the screen (“Oh look, an idea!”).

The autism:ADHD interface.

I struggle to keep focused sometimes, unless I’m really engaged, interested, and enjoying what it is I’m doing. Sometimes it’s my surroundings that distract me; sometimes it’s my own thoughts. My brain never stops motoring.


[Image description: black and white felt tip comic scrip with two panels.

PANEL 1 (left-hand side: two female-presenting people, walking along – one is talking to the other (speech bubble: “so anyway, she was all, like…?!”), who is distracted by something(speech bubble:”Oh look, a squirrel,”).

PANEL 2 (right hand side): the same distracted person is at her computer, but is looking away from the screen (speech bubble: “Oh look, an idea!”).]

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”]

A passion, stolen

As a kid, most of my spare time was spent drawing. It was my earliest passion.

I was no savant. But I suppose, on reflection, I did have at least some innate “gift”. The people I colourfully produced aged just three, in bright felt tip, were anatomically correct (in as much as having, for example, five fingers on each hand and articulated limbs), and incredibly complex.

Relatives and family friends recall me feverishly creating drawing after drawing, eagerly quick-fire-switching between each colour (but always carefully, but with lightning action, replacing the lid of each pen after use).

When I entered primary school, I had an awareness that I was somewhat advanced compared to my peers, and sensed that this singled me out in a way I couldn’t quite place, but didn’t like. I intuited from early on that I was somehow different, and desperately wanted to fit in. So I copied my classmates’ clumsily executed, anatomically incorrect scrawls, in the hope of escaping attention. I was doing this at age five. But adults questioned me on this practice, and encouraged me to stay true to myself and embrace my abilities. I drew. And drew. And drew.

Never what was in front of me. Always scenes and characters conjured up in my own mind. But always produced with the intention of seeming “realistic”, however fantastical the subject.

I recall, at around six years old, having an argument with a classmate who refused to draw a nose on her depiction of the face of our teacher – we were making “Get well soon” cards as she was ill in hospital, and most of us had decided to draw her recovering in bed. When my friend got up to go to the toilet, I spitefully snatched up her card and drew that nose.

Around seven or eight years old. A documentary about the autistic savant architectural artist Stephen Wiltshire was showing on TV. I was captivated watching him draw and paint intricate architectural wonders from memory. A telling exchange from the time:

Me: “Mummy, what does ‘autistic’ mean?”

My mother: “Oh, it’s when someone is lost in their own world.”

Me: “Oh, I think I must be autistic, then.”

Ironic, huh? I think at the time, I was interpreting the word, and my mum’s explanation, as meaning “artistic”. After all, like Stephen Wiltshire, I loved to draw.


I drew and drew and drew. Never still life or landscapes. Always people – no scenery. Just groups interacting socially, or individuals, their outfits, hairstyles and accessories lovingly and meticulously detailed. And always from my imagination.

I attended the village youth club. As other kids shot pool, played board games, or ran round and round the building outside, I drew.

“Why do you do that here? You can just draw at home, can’t you?”

I wasn’t quite sure. I think I just liked the sense of being around others, but without actually having to interact. I did interact with the adult helpers. Mostly, I talked to them about the Andrew Lloyd Webber musical Cats. Not in any way autistic. Not in the slightest. Oh no.

At school, I was held spellbound by the elaborate creative projects dreamt up by my teachers in those years of freedom prior to the introduction of the English National Curriculum. Entire classrooms converted into rainforests. Imaginary monsters conjured out of paint spatters, with each child creating our own monster’s name, character and back story. Exercises in using grids to “enlarge” the designs of postage stamps or food packaging labels. Collage. Tissue paper. Clay. Papier-mâché.

And whilst other children would play games in their spare time, I would draw. And draw. And draw.

In secondary school, I had access to a wider range of materials. My imagination grew as I, my brain, and my body did. In one class during the early years, our tutor group was asked to make clay studies of people. Deliberately stylised and “cartoonish” – we were encouraged to think about how we might easily represent their essence in exaggerated, simplified form.

My clay man, sitting on the floor with legs outstretched and crossed, was listening to music through a Walkman and headphones. Eyes closed, singing along, with beatific facial expression, seeming to beat his hands on his legs in time to the music. Lost in enjoyment.

He was covered in clear glaze. The shape and form spoke for themselves and needed no further adornment or colour.

Later, when several of our pieces were on display in a case along the Art and Design (A&D) department corridor, someone asked one of my teachers if they could buy my piece. My teachers asked me, but I refused. I was too proud of it to let it go, and it sits on my parents’ living room bookshelf to this day.

As I continued through secondary school, I continued to find solace in drawing as life got more and more difficult. I’d graduated from bright, multicoloured felt tip to pure, grayscale pencil. But I still drew nothing but people. I drew. And drew. And drew.


Of course, when it came time to choose our GCSE options, there was no question that I’d be taking Art. At every parents’ evening, my teachers had told my mum and dad that they were certain I was destined for art school. No doubt about it. I was a polymath in everything but PE, but art was my one true passion.

And so came the beginning of the end.

The class I was put in was allocated to a wayward, alcoholic teacher who was approaching retirement. A man with his eyes off the road. Off the ball.

We drew. We created. But I had no idea where we were going. There was no inkling of what syllabus we were meant to be following. I knew from friends in the other classes that there were certain things – topics, tools, and techniques – that we were meant to be covering as part of the GCSE Art curriculum. Only our class wasn’t covering them. The uncertainty was alarming.

And then, strange things started to happen. At one point India, and Hindu mythology, were given to us as sources of inspiration. My teacher was starting to construct large sculptures of bamboo and tissue paper. One, in particular, with a likeness to the elephant god Ganesh, seemed to have a vague connection to some of the 2D work I was producing on paper.

And so it came to parents’ evening, towards the end of that first GCSE year.

When my parents arrived home, they were spellbound. In awe.

“Wow, sweetheart. We’ve seen your sculpture! It’s amazing! Wow, you’re so talented, we had no idea!”

(Or words to that effect.)

“But…I haven’t made any sculpture.”


And from there, it all unravelled.

In a state of panic, my incompetent, booze-addled but nonetheless artistically adept teacher had somehow recognised he was doing his star pupil a disservice; letting her down; putting her at risk of never achieving the dizzy artistic attainment levels she was so easily capable of reaching. And in some misplaced attempt to help me along, he’d constructed a work no 15-year-old would ever have been able to produce, and passed it off as mine.

Of course, I couldn’t accept the dishonesty. The deceit. How could he lie, on my behalf? How could me make me complicit, force me to lie? Regardless of how I progressed through GCSE Art, I wanted all the work to be my own.

I was devastated. Traumatised. And, if I’m honest, utterly weirded out by the whole thing. It was bewildering, and disturbing.

I sat in the headmaster’s office with my dad, tearfully recounting my side of the story, all the while wondering what the hell was going to happen to my class, my GCSE grade, and my future.


The following academic year, my teacher was no longer at the school. I have no idea whether he was dismissed entirely as a result of what occurred with me, or whether this was merely the tipping point. The other members of the A&D department mucked in, clubbed together, and worked to help our class get through our second and final year of GCSE Art.

I made my portfolio, documenting the supposed journey in the development of each piece of artwork. I made it after the fact.

Like someone with innate abilities in mathematics, I couldn’t show my workings. It all just “came out” when I put pen to paper. So, I just made it all up, fabricating the connections for the sake of meeting the requirements of a curriculum not set up for people who thought about, or enacted, the producing of art in the way I did. The portfolio made logical enough sense. I was good at being creative, in making up a decent story. The school kept the portfolio, with my permission, after our GCSEs were complete, to be shown to future students as an exemplar. I got an A.

By my love affair with art was over. A lifelong passion, sullied. I couldn’t bear to study it beyond that point.


My parents never forgave the school. Art had been, according to my dad, “the only time I was ever truly spontaneous”.

A few years passed, and I started to dabble in drawing cartoons, primarily of favourite bands. A few were published in fanzines. I’d moved from grey pencil to black pen-and-ink.

But I’d missed out on those years of formal training that I’d always anticipated being my natural, written-in-the-stars trajectory. It still pains me that I am far less “skilled” in formal drawing techniques than others who have studied art to a higher level than I.

And instead of following my childhood dream, my birthright, I spent another 15 years or so trying to find a new niche. There was so much I was good at, but very little that ever lit my inner fires quite like drawing.

I was the victim of theft, the stolen goods my earliest, most cherished passion.

And whilst I try so hard not to regret, it is something I will never truly get over.


[Featured image: plain black background imprinted, in stark grey upper case, sans serif letters, with the words “A PASSION, STOLEN”.]

In praise of the brick

A row of brightly coloured, plastic Lego minifigures, in a range of poses and mismatched costumes, carrying a wide variety of props.
In between bouts of abject misery, whilst I’ve been off work over the summer holidays I’ve been immersed in a nice little obsession that has gripped every single member of our four-person household.

My husband was always a huge Lego fan as a child, and was always eager, from her birth, for our girl to reach an age where she might, just might, develop an interest in it. And although she showed little interest in the larger Duplo blocks as a toddler, that interest did come as she approached three, and for the past couple of years, building increasingly off-the-wall creations with those little coloured plastic bricks, plates and “elements” has been one of dad and daughter’s chief ways of bonding.

It’s hard to get her to put down the hardback Lego Ideas books she stays awake at night poring over. It’s an outlet for her feverish, ever-active, ever-inspired imagination. And it’s a compulsive habit for all of us.

As a child, Lego was simply one of the many things I played with. My younger brother had space and police sets. I gravitated towards the classic, multicoloured stuff and mainly built houses. Or house layouts. Single-storey roofless semi-open plan buildings with every room, and every appliance accounted for. All fairly basic. I enjoyed the creativity inherent in trying to replicate the look and feel of everyday items using materials constrained in their shape or colour. But the primary outlet for my wilder imaginings as a child was drawing. 

Now, however, it’s a different story. We have masses of the stuff. My husband takes great enjoyment in building pre-designed sets straight from the box. Daughter initially watched him build, enthralled, but these days takes a far more active role. And later, when the purchased, assembled sets are dismantled (and I have to disregard the inner wince I experience as the strict inventory of bricks from one set is mingled in with the rest of our stash of plastic), my daughter starts inventing. She also loves collecting minifigures, but is always happy, once again, to dismantle their intended forms and create her own monster minifigure mashups.

Our toddler is captivated by it all. Of course, his involvement has mainly, until now, consisted of dismantling his sister’s creations (and yet never smashing. He’s always take them apart bit by bit, examining the pieces) or running off with much-needed elements. Now he’s sorting the bits into type, assessing and grouping sizes and shapes, building towers of bricks of one particular type or another, and showing a level of dexterity and manual strength I’m pretty amazed at for a not-quite-two-year-old.

(And yes, I know he’s not old enough for it. He should stick to his Duplo. But he doesn’t put the bits in his mouth. He plays with them. Properly. He puts them together logically, and takes them apart. We supervise him. And we’re all happy.)
Front view of a small two-storey model house constructed primarily of beige, grey and brown Lego bricks, with double doors, white framed windows and navy blue roof tiles. In the front doorway stands a blank faced minifigure wearing a tricorn hat. On a balcony on the right of the picture stands a simple two-eyed 'ghost' constructed of white bricks.
And although it’s always been my husband’s domain (as the stay-at-home parent, he’s always had more available time), over the holidays I’ve really got in on the act.

Lego is just so phenomenally pleasing. It’s tactile. Stimmy. And despite the fact I’m hugely, and often adversely, sensitive to noise, I find myself enjoying the sound of the bricks as they crash and rattle through my hands as I run them through the box, searching for the right element. It’s akin to white noise, I suppose.

The design of each individual element can be utterly exquisite. And the beauty of the sets you can buy suggests that those who designed them had a hell of a lot of fun in putting those ideas together. Some are beguiling in their apparent simplicity; others dazzlingly, deliciously complex. Others still, especially those builds on a micro scale, make my heart sing with the way the very essence of an animal, person or object is conveyed by such a limited combination of component parts. 

Of course, there’s so much more scope now than there was when I was a child. The range of available elements is astonishing. And sometimes this raises expectations too high. You have a seemingly ridiculous range of materials from which to build from, and yet not quite enough of certain items to build your envisaged design to absolute perfection. Perhaps tighter constraints are, sometimes, liberating. But variety can also be hugely fun, and hugely exciting.

The interior of a small two-story house made of Lego bricks. On the left is a brown staircase with a 'Mr Hyde' type figures standing in it. A small 'ghost' peers out of a first floor door, and a larger one stands on the ground floor, to the right of the picture. Dimly visible in the background is a minifigure wearing a tricorn hat.This week, I built a haunted house for my daughter, at her request. It was an addictive process. I’ve struggled to tear myself away from the build, and once again, I’ve found myself utterly immersed, compelled. Always keen to improve on the structure and appearance of the thing.

At night, I’ve seen bricks in my mind’s eye. And even while ‘Picture This’ was playing in my head as I took my “need for space” walk earlier this week, and I noticed leaf formations, the shapes of trees, the light of the moon in the sky, and my feelings about past walks and past personal experiences and depressive episodes, I still found myself looking at buildings anew. Evaluating and appraising their structures, and wondering how such a thing might be conveyed in studded plastic form.

Daughter added embellishments, decor and furniture to the house, and two out of the three simple brick-ghost inhabitants. The husband added a couple of spooky minifigures.

A two-storey house built of brown, grey and beige Lego bricks. A simple 'ghost' made of white bricks stands in an upstairs balcony.It’s the most complex thing I’ve ever built out of Lego. And I’m bloody pleased with it. But also dissatisfied because I’m aware there are better techniques for ensuring structural integrity, optimum ordering of building of each part, and so on. The pattern-spotting, detail-fixated autist in me sees room for improvement everywhere, and a keenness to learn, observe, and do more. The trouble is, I’ll be back at work soon. I’ll have less time.

But I don’t think I can let go of Lego. It’s got me, dammit.