School Vignettes: the weird boy

‪Digital painting of a white, blond-haired boy vigorously flapping his hands while walking. A white, brown-haired girl stands in the foreground, looking over her shoulder at him.‬

Sometime around 1988 (28 years before autism identification).

There’s this boy at school. He’s really strange.

He’s not in my class. He’s a bit younger, I think.

Most of the time, I see him on his own at break times, walking round and round the primary school buildings. Always anti-clockwise.

He moves his hands vigorously. He flaps them, but one hand seems to move from side to side, the other up and down. They’re held up in front of his face.

He makes noises as he flaps his hands.

They sound like a motor engine, and so I assume that his hand movements are a crude, inaccurate attempt at mimicking the actions of a driver behind the wheel of a car. I suppose he must like cars.

He doesn’t say much. I don’t think I’ve ever heard him speak. I’ve seen him cry, though. He seems to cry at lots of things. He wails. Wordless. He thrashes his arms as he does so. I don’t know why he’s so upset all the time.

There are times when I feel sorry for him. He looks even lonelier than I am. Or at least I assume he is – I’m often on my own too.

I like to be alone sometimes, and I often get annoyed when people try to insist that I join in with games at breaktime when I want to wander past the trees at the edge of the school grounds. And I feel lonely because everyone else is enjoying the thing we’re all doing, but I’m not. Other times, I’d like to play, but they don’t want me around. Then I feel really lonely.

At least I can talk to the other children when I need to.

But I wouldn’t know how to communicate with him. Sometimes I’ve been a bit scared of him, of his strange behaviour. I might even have pushed him out of my way once or twice. That probably wasn’t very nice of me.

All the other kids say he’s weird. Aside from a few of the more considerate girls, most are clear they wouldn’t want anything to do with him.

I don’t say much about it. I’m complicit in my silence but, after all, I’m weird enough myself. I give people enough ammunition to tease me already. Better just to go along with the consensus.

I wouldn’t want to draw any more attention to myself by disagreeing with what they’re saying about the weird boy.


[Image description: Digital painting of a white, blond-haired boy vigorously flapping his hands while walking. A white, brown-haired girl stands in the foreground, looking over her shoulder at him.]

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Therapy Vignettes: the awkward silence

A hastily-sketched digital painting of a shadowy female figure seated by a window shaded by blinds, gazing attentively but ambiguously towards the viewer.

[Note for non-UK readers: in this, and similar posts, I use the term ‘counsellor’, synonymous with what others call a ‘therapist’, i.e. someone who works in a one-to-one confidential setting providing listening/talking therapy and support.]


Autumn 2000 (15.5 years before autism identification).

I’m in a dimly-lit room in the secluded, greenery-shrouded portacabin that (at this point in time) houses the university counselling service.

It’s cold and grey outside. Late autumn. Close to my birthday.

Taupe vertical blinds shade the anonymous nearly-square window.

A cube-shaped cardboard box, ornamented with a pink, purple and cyan floral pattern and dispensing crisp, white tissues, sits on a low wood-effect table.

***

I’ve been seeing the counsellor for a few sessions now.

All since – upon my return from a long day manning a society information desk at the Freshers’ Fair, and on catching sight of the sight of piles of unwashed crockery and pans in the kitchen – I broke down uncontrollably on the floor in the back doorway of our student house, and my friends insisted I see someone about how I was feeling.

And here I am again.

And here, once again, is the same silence.

***

It always starts this way.

Having greeted me as she led me to the therapy room, the woman sitting opposite me has remained silent since we both sat down.

Earnest, attentive eyes on me.

Waiting.

It’s always like this.

What does she want me to do?

What are the rules here?

Is this the way all counselling sessions are supposed to begin?

I try to work out my opening gambit. What is the first thing I should say in this situation? What does she want me to say? Talk about how I’m feeling? Talk about what my week has been like? Actually ask her what’s supposed to happen?

And if I don’t speak, will she eventually prompt me?

Or might it be possible that the entire 50 minutes passes by without a single word?

And how might that help me?

Would she actually allow that to happen?

I just don’t know.

I wish someone would actually tell me what’s supposed to happen. It’s making me agitated.

Earnest, attentive eyes on me.

Waiting.

***

At last, the silence becomes too much.

I resign myself to breaking it – hoping that, as I start to speak, I’ll gradually work out what I actually want to say, and that, gradually, I’ll become at ease with speaking to this stranger staring earnestly and attentively at me.

I take a deep breath…


[Image description: A hastily-sketched digital painting of a shadowy female figure seated by a window shaded by blinds, gazing attentively but ambiguously towards the viewer.]

The more I know, the more I realise I don’t know.

Fractal spirals in a multitude of different colours.

There are many times in my life when I’ve pretended to be an expert in something – both to myself and to others; both knowingly and unwittingly.

As a child, I would often deny the existence of new pieces of knowledge outside my ken if they’d been brought to my attention too suddenly, too unexpectedly, or in hostile or otherwise unpleasant circumstances. I’d correct people, without being open to the possibility that they might actually be the one in the know.

It wasn’t that I didn’t like learning new things; I loved learning new things, but I liked to learn them on my terms. Even now, it’s something I struggle with. That autistic need for control.

Plus, discovering very suddenly that I’m wrong hits me violently, and hurts.

As I grew older, growing more and more desperate to find a place to fit in, I would feign expertise and wisdom on matters important to those around me – fashion, music, literature, TV programmes, politics. But my expertise was rarely anything other than surface-level. It was all part of my social mask.

I’ve written previously about how I’m not a “proper geek”, and how, in the past, this has caused me to struggle with my identity as an autistic person. I’m a polymath, and highly able academically, but I’m interested in far too many topics, fields and subjects to become a true expert in any of them. I struggle to say no to things and people. I struggle to narrow down my choices.

Perhaps it’s the ADHD-er in me. Always chasing after the next glimmering, moving, intellectual thrill, even before my thirst in a previous area has been fully quenched.

Certainly, the fact I went so long without formal identification for either autism or ADHD has meant I’ve never truly understood how to learn in a way that suits me best. Had I known earlier what I now know about myself, I might have understood better how to narrow down my interests and organise my time – the better to reduce overload and overwhelm; the better to be compassionate, nurturing and kind to myself.

I might also have recognised that it can be okay not to know.

The years of pretending to know more than I did came from a deeply ingrained lack of confidence and low self-esteem. I was afraid that others would discover how fake I really was; how stupid I really was. I wasn’t really clever; I’d just got lucky enough times to get reasonably far in life.

I know this isn’t really the case.

Another awkward truth I’ve had to face up to is how abjectly frightened I get when I become interested in a topic, only to realise how little I know about it, and how much I still have to do to become knowledgeable.

The more I know, the more I realise I don’t know.

As someone who wants to take pride in their intelligence, and who wants to know everything, it’s belittling and crushing to realise, when I’m in the midst of learning something, that I’m still little more than a novice. I’m intimidated by the magnitude of what’s in front of me. In the past I’ve been so daunted by the scale of a task that I’ve decided to quit before I had the chance to fail.

These feelings have been played out again in the recent years I’ve been learning more about autism – my own, and autism in general.

I’ve always hated being a beginner – it’s one reason why I hated practising when I was learning to play musical instruments. I’ve been thinking of overhauling the information pages on this site for a while, but can’t quite face doing it. Nevertheless, I know a lot more about autism and the autistic community now than I did when I originally published much of what’s on here, and sometimes I physically wince at the naivety evident in some of the resources I’ve shared, and the words I’ve written – in the same way that I might physically wince at the scraping sound of a beginner violinist, or the screechings of a primary school recorder concert.

When it comes to autism, I’m still a relative beginner.

Recently, I applied for an academic job in an autism-specific field. I knew I’d barely be in with a chance, with my absence of PhD and my limited autism-specific professional experience. My lengthy track record in learning and teaching was probably not relevant enough.

But it was a job I’d have loved. And I naively thought personal experience alone would get me a long way. I’m facing instability at work, and felt there was nothing to be lost from giving it a go – it says something about how far I’ve come confidence-wise that I felt comfortable enough to submit an application.

I wasn’t shortlisted.

But even while I’ve congratulated myself for getting “out there” and being ambitious, I’m still embarrassed that I even put in an application. I wince again, this time at my audacity in doing so.

Autism is huge field. Of course I didn’t know enough to secure that kind of job.

But I can learn.

The more I know, the more I realise I don’t know.

And I’m increasingly accepting not knowing as an opportunity. An opportunity to learn, to develop skills, and to grow. I’ve reminded myself that learning new things is exciting. There’s a whole wealth of potential learning ahead of me. So much fun to be had.

I’m gradually overcoming my long-held lack-of-PhD-related inferiority complex, and my frustration that I can’t take time out of my working life to study autism formally in the way that some of my peers are able to. But my life is different from theirs, and there are other opportunities and benefits that I’ve had that some of my peers have not. I’m not comparing like with like.

So I’m studying autism for fun. I’m devouring books and peer-reviewed journal articles in my limited spare time. I’m reading academic research and personal accounts. I’m making careful notes, keeping close bibliographic records, and forming links and connections. And I’m enjoying it.

And sometimes, yes, I get embarrassed, frustrated, and even scared by how much I still don’t know. But I’ve faced so much in my life that’s truly terrifying, and this is mild by comparison. I’ll never know everything. No-one can. And it’s fine for me to accept that I can’t devote the time to learning about autism that a student, researcher, or lecturer in autism can. I can only do what’s within my capacity to do at any given time.

In the past couple of months I’ve taken the leap of delivering freelance training, alongside my day job. Sometimes alone, sometimes with a fellow autistic with whom I share a number of professional interests. It all started somewhat accidentally, but the responses by participants have so far been great, and I’m anticipating that demand will grow. I have ideas for consultancy work, and more “professional” types of writing. Some of this connects very emphatically with what I do in my substantive area of employment (I’m always able to make connections); some of it extends and expands into other areas.

As I design, plan and prepare for the work I do, I’m adding to my own body of knowledge and bank of skills all the time. I’m already skilled at teaching and training delivery, but I’m also – regardless of my many struggles – good at learning new stuff. As long as it’s on my terms.

I realise I need to pace myself. I mustn’t let my ideas get ahead of me, however excited I get about them. I still need to pay the bills, cover the mortgage, and feed my family. And for now, I need the stability of permanent employment.

But in the longer term, who knows where this learning will lead? I know for certain that it won’t be wasted.

The more I know, the more I realise I don’t know. But that’s okay. There’s a bright future ahead.


[Image credit: ‘Fracthulhu’ by Charles Strebor. Image features fractal spirals in a multitude of different colours.

I’m fully aware that fractals aren’t a complete metaphor for what I’m talking about in this post. Google’s definition is of “a curve or geometrical figure, each part of which has the same statistical character as the whole” – this isn’t something that can be said about bodies of knowledge.

Nevertheless, there’s a connection with the idea of infinite complexity being continually revealed the deeper you delve and closer you explore.

And anyway, fractals are pretty.]

#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.]

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”]