Therapy vignettes: was he on to something?

Close-up photograph of household vertical blinds. The lighting emphasises the textures within the blinds, creating an image that seems almost abstract.
Image credit: Ben Hosking

[Trigger warning: death/bereavement.]


October 2006 (12.5 years before autism identification).

It’s a Saturday morning. I’m at the last of a series of counselling appointments provided by work.

The ostensible reason is bereavement; my two remaining grandparents recently died within one week of each other. But actually, we dealt with that in the first week. My maternal grandfather and paternal grandmother had lived long and fruitful lives. Their final months had been full of pain and paralysis, preventing them from living as the people they had been their entire lifetimes. They had been suffering, and they were suffering no longer.

(I’m not incapable of profound grief. I was ten years old when my best friend, a two-year-old black cat named Catkins, was killed by a car. The weeks of disbelief, crying and loneliness that followed were some of the most painful I have ever experienced. And in years to come, I will be devastated by the untimely death of a friend my own age. This will also affect me far more deeply.)

We’ve moved onto something else. Something I alluded to briefly in early sessions, that my counsellor is keen to explore.

***

The counsellor has been sitting opposite me. Although I struggle with eyes, I can’t escape the compulsion to stare at his.

He has some kind of tic (or other neurological quirk?) that makes him flicker his eyes from side to side. I know he can’t help it, but I also can’t help but be intrigued as to its cause, and mechanisms allowing it to happen.

I try to avert my gaze.

***

We’re approaching the session wrap-up. I feel a sense of release, but also depletion. I have expended much today.

“So, as you know, this is your last session with me. But I think we need to look at where to go next. This idea of ‘social impediment’ you’ve been referring to – this seems to be really significant. I feel it’s something that it would be useful to explore in more depth.”

“Okay.”

“So I’m going to give you some details of other providers. You can continue coming to see me. You’d have to pay for future sessions, of course. Then there’s [Service X] – you might find their approach useful. There are a few other options – I’ve written them down for you.”

“Thanks. The thing is…would I have to pay for all of these?”

“Unfortunately yes. Of course you can talk to your GP, but I know the NHS waiting list is really long. You’ll be waiting a long time. And I think you really need some continuity. I don’t want you to have to wait too long – what you’ve been talking about seems really pressing. It would be really useful for you to be able to delve into it properly. We’ve not been able to do this in six sessions.”

“But I really can’t afford it. I don’t earn that much. My husband and I don’t have a lot of spare income.”

“I’m wondering whether you need to think about how much of a priority this is. Your feelings that you are ‘socially impeded’, as you describe it – they seem to be really affecting you. I think you’d benefit from being able to explore it, and get to grips with what it means for you.”

A pause.

“There might be some subsidy available – have a look at [Organisation Y]. There are some criteria, but you might be eligible for some help.”

I look at the piece of paper, and come to the conclusion I probably wouldn’t qualify.

I take a deep breath.

“I’m really sorry. I know this is important. But the thought of having to pay for more sessions stresses me out. I don’t think I can.”

“That’s a real shame. I really feel more sessions might help. But it’s your decision. Anyway, I hope you’ve found this useful for you, and I hope I’ve been able to help you in some ways. Good luck with everything.”

***

Years later, I wonder. Was autism the thing he was getting at? And what would have been my response at that time? At that age?

I’ll never know.


[Image description: Close-up photograph of household vertical blinds. The lighting emphasises the textures within the blinds, creating an image that seems almost abstract.]

‘Unpost’* one: solace in a spider web

Have you ever watched a spider spin its web? I mean, not just watching a speeded-up playback of a time lapse recording on the telly, but actually sat or stood in front of a real spider spinning its web in real time before your eyes?

This afternoon for the first time I did exactly this.

In recent weeks, I’ve been coming to the increasingly clear conclusion that I have, for a long time, been suffering from a certain degree of complex post-traumatic stress disorder (C-PTSD). This isn’t something I’ve randomly decided, and it’s not something I’m plucking out of the air. There have been discussions going on in the adult autistic online world, and much of this resonates with me.

I’ve struggled for some time to write any new posts for this blog. I seem to be in a constant state of exhaustion. I haven’t had the energy, time, or emotional wherewithal to write much in the way of new content – whether whimsical, creative, exploratory musings, or intelligently- and expertly-crafted essays.

I haven’t had the battery power for advocacy, politics, or any form of campaigning on behalf of myself or of any other autistics through my writing. I’m barely keeping my head above water sufficiently to do my job, or be an effective parent.

But my recent “vignettes“ posts seem to be coming out of nowhere. Painful memories have been coming to the fore as a result of chance conversations and certain word combinations I have read or heard online, or they’ve revealed themselves as the landscape and landmarks surrounding some of the stops, halts, or termini on the journey taken by my train of thought.

They’re flashbacks.

They’re vivid.

And while I can’t get rid of them entirely, by capturing them in writing, I’m taming them, before releasing them into the wider world in a controlled fashion, their custody no longer solely my responsibility.

I know there will be plenty more of them.

I’m increasingly realising that I have been traumatised. Not by a sudden, catastrophic event. My trauma is cumulative. It is the trauma of countless small painful experiences. Emotional pain. Intellectual pain. Social pain. Sensory pain. Some of that pain has been of a primarily physical nature; sometimes, the effects upon me of other forms of pain have themselves been physical.

Some of that pain has been inflicted upon me by other people – both prior to and since my autism diagnosis. Some of those who inflicted that pain were fully aware I was autistic, many weren’t. A lot of pain has been (and still is) self-inflicted – I’ve learnt to expect negative interactions with others, or problematic interpretations of my behaviour, actions, and modes of communication. I’ve learnt to assume that I’m the one in the wrong even when I know that, objectively speaking, that isn’t the case. And I beat myself up about it.

Today was a team away day. It was a far more positive experience for me than the event which formed the subject matter of a recent work vignette. The afternoon discussions were practical, and produced some tangible results that might actually help to shape the services we deliver and give us some concrete objectives.

From an accessibility point of you, everything had been handled pretty well. The venue wasn’t sensorily objectionable. I, and a fellow autistic working in our section, had received plenty of advance information about the structure of the event, and details on the format of specific activities. I didn’t feel remotely uncomfortable about ducking out of conversations during the breaks and sitting in a corner with my headphones on, or taking myself outside for a breather.

But the first exercise of the day felt problematic for me – we were each asked to pick a shape that we felt most closely represented who we were as individuals. Having looked at the material beforehand, I had already made up my mind that I was a “squiggle“. There were a fair few of us squiggles, including a not-insignificant number of neurodivergent folks in the room.

I associated the squiggly line with dynamism, energy, creativity, exploration, lateral thinking, and a busy, active mind. Boxes are too rigid; circles have some appeal to me, with their lack of endpoint, their sense of unity, continuity, inclusiveness, and something of the holistic. I don’t see myself as a pointy triangle or a rectangle.

We were asked, in individuals then groups, to note down words associated with each of the shapes – the ones we most strongly identified with, our second choices, and those with which we identified the least strongly.

Whilst it was meant to be a harmless, lighthearted, not particularly scientific activity to provoke discussion about team dynamics, and help us think about the characteristics of some of the people we work with, I couldn’t help feeling triggered by some of the more negative words and phrases that a few “non-squiggle” colleagues associated with my shape.

Flaky

Out of control.

Messy.

Doesn’t plan anything – or struggles to stick to plans.

Unpredictable.

There was hostility towards some of the other shapes as well – the “box/square” came in for a fair bit of criticism.

But whilst it was not intended that we read too much into this, I was reminded of all the times when people have levelled criticism at me without fully understanding me. I’ve been told I was out of control, that I can’t multitask, that I’m disruptive. I’ve called myself “stupid” and “lazy” because I procrastinate, have difficulty planning and organising, and difficulty seeing things through – often because too many other ideas are crowding my consciousness, vying for my attention, but also, frequently, because I simply can’t make my brain “do the thing”.

I’ve been criticised, and often criticised myself, simply for being the way I am in a world in which my way of being isn’t the majority modus operandi.

When all the time, I’m having to negotiate far more just than the explicit task at hand. I am, in fact, multitasking by default, because – as a disabled person and an autistic person – I am simultaneously performing so many extra “jobs“ on top of the one that I’m paid to do. I don’t always have the energy to perform that job well as well as I’d like, because my energy is being expended elsewhere in a way that those who do not share my neurotype couldn’t possibly imagine.

And as a perfectionist, that sucks. I like doing things well.

So recently, I’ve been going through a bit of an “I hate my brain“ period. I’ve been resentful of the fact that I’m a polymath, with a constant explosion of ideas taking place in my brain, but little ability to focus on one project, activity, or idea to execute well, and little time or energy to devote to these passions.

It’s not really the right time to chase my dreams – my children are still very young, both are neurodivergent and need a lot of input. I’m still getting to grips with new job and a new work environment. Various members of my family, and I myself, are experiencing a fair few health challenges.

Which means I find myself resenting the ideas that come to me. I can’t actually do anything with them, but I don’t have the patience to leave them be, or make a note of them to pursue at a future time when I’m more sufficiently resourced to do so.

After the away day, I was tired. So much listening. So much processing. So little rest. But as the working day finished earlier than usual, I decided not to go on a long wild walk, but instead to take my usual route home through several of the local parks but do so more slowly, more mindfully.

Rather than feeling the compulsion to experience the expansive, the large-scale, the landscape at macro-level (as is often the case when I chose to take myself outdoors to shake off my overwhelm), I was compelled to examine the outdoors in miniature.

I stood watching bees pollinating flowering bushes and shrubs. I was fascinated to note that certain types of bee preferred certain plants. I appreciated, for perhaps the first time, the what-should-be-damned-obvious fact that bumblebees (being insects) have bodies (like all other insects) that are articulated into three distinct sections rather than being a somewhat indistinct ball of fuzz with a head, legs and wings.

Closer to home I spotted a ladybird perched atop a valerian stem. I noticed its mouthparts, antennae, the articulation of its six limbs, its individual pattern of spots, and the smaller segmentation of its thorax, visible briefly on the underside of its body as it clambered over a leaf stem, beneath the modified wings that were its scarlet, polka dotted shell.

And then I saw the spider.

A garden spider, minutely patterned in greys, beiges and taupes. A particularly tiny example of the species.

It had just begun to construct a web between several valerian stems. The radial threads were already in place, and at the point I started to observe the tiny creature, it was in the process of strengthening the centre. As I watched, it finished this stage, before constructing a few non-sticky spiral threads to allow it to scamper to the outer reaches of the structure, before spiralling inwards with the final, sticky silk that would form the completed web.

The threads were so fine they were barely visible without holding my head at a tilt.

I had never before appreciated the meticulous complexity, or the beauty, of the web-spinning process itself.

In watching the story of the web’s construction unfolding before my eyes, I slowed down. I relaxed. I smiled. I took solace in nature doing its thing. Solace in the spider’s web.

And I appreciated my brain again. Appreciated my love of detail. My love of close-up examination that is just as strong as my love of patterns, connections and the bigger picture. My ability to enjoy such things without having to quantify them, or question whether or not I should be spending my time enjoying them.

I felt restored.


*I have Anna Nicholson of Transponderings to thank for the idea of ‘unposts’ – it’s useful sometimes to be able to post a set of uncategorised, stream-of-consciousness musings. I’ve recognised the need to be able to write without necessarily putting pressure on myself to come up with something polished.

Anna – I hope you don’t mind me pilfering this approach! ☺️

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.]

#AutismAcceptance/#AutismAppreciation doodles ‘n’ scribbles, no. 22: I feel too much, and I cry a lot.

Black and white digital ink drawing of Mama Pineapple, a white femme-presenting person with mid-length hair. She has her eyes shut, with tears streaming down her cheeks, and is holding her hands to her head, disrupting the fall of her hair.

Before I understood more and knew better, I didn’t see myself as autistic because I knew I felt empathy. Tonnes of it. So much so that I can barely cope with reading or watching the news. I’m particularly affected when I read about, hear about, or witness the abuse or suffering of any being who is vulnerable.

I’m finding this month difficult. I’m keeping social media, and Autism Awareness Month, at arms’ length. But the stories of disrespect, disregard, disdain, mal/mistreatment, abuse, ad nauseam, of autistic people throughout history and today still manages to permeate.

I also cry a lot. I cry at small things. I cry at big things. Uncontrollably until I’m utterly spent. It’s also my default meltdown format.

This doesn’t mean I’m depressed. My positive emotions are also bigger. I just feel too much sometimes.

A lot of the time.


[Image: Black and white digital ink drawing of Mama Pineapple, a white femme-presenting person with mid-length hair. She has her eyes shut, with tears streaming down her cheeks, and is holding her hands to her head, disrupting the fall of her hair.]