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.]

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.]

What’s in the bag? A look at Mama’s stim kit.

Still life colour photograph, through warm dramatic “vintage” filter, depicting, in foreground: a sequin-coloured oversized pencil case, out of which spills folded “infinity hoops”, a black Tangle, a red-and-yellow stress ball in the shape of a Marvel ‘Iron Man’ helmet, a small three-pointed metallic fidget spinner, a fidget football, pine cone and seashell, a piece of grey foam, and other items partially in view. There is a smaller sparkly bag inside in which can be seen a small bottle of aromatherapy oil and a tin of lip balm. Behind these is a black bullet journal, and a red-zipped pencil case with in a colourful dinosaur print fabric.

As time has gone on since my formal autism identification in 2016, and as I’ve gradually learned more about myself – my autistic self – I’ve got better and better at recognising what makes me tick.

What makes me anxious, overwhelmed, panicked, angry. What makes me calm, happy, blissed out, joyful.

I’m increasingly better at looking after myself. But this ability to look after myself is continually pushed to its limits, and beyond. It seems that the more I learn to cope with and overcome, the more I get another load of difficult stuff shunted my way. By gosh, I still have a lot to learn.

But I’m far more positive in how I address this nowadays.

A couple of months ago, I put together a stim kit. I was sick of having random bits and bobs floating around in my bag, in each of my different coat and jacket pockets, or scattered around the house and on my desk at work. Sick of repeatedly misplacing favourite objects and toys. Things getting rusty, encrusted with grot, scratched or broken.

I don’t always need things to stim with, of course – dancing, pacing, singing, and many other activities don’t require ‘stuff’. But having small items to hand makes things easier in a lot of circumstances.

Different strokes for different folks

I wanted to give myself more options – a stim for every mood and every occasion. I’m always looking for things to add to it, but for now I’m quite happy with what I have at my disposal.

(Although yes, some of us do indeed like having things to stroke, and I’m still searching for a nice scrap of velvet ribbon…)

I personally let other people (both autistic and non-autistic) try out the stuff in the bag from time to time. It’s great to see someone get fresh stim ideas or discover something new that really works for them, and also fascinating to see what does and doesn’t help different people. I also like to de-mystify and normalise stimming as a ‘thing’.

You don’t have to share your stim stuff with other people, of course. It’s entirely your choice whether you do so or not. I like to, but we all have different preferences.

Very recently, I put something similar together for my daughter (six years old at the time of writing). Hers has some of the same items, but some variation – there’s more squishy and chewy stuff, which suits her.

I’d recommend that all autistics, and parents of younger autistic kids, consider assembling something like this – it’s great to have positive options for redirecting negative/self-injurious stim urges, calming oneself, promoting focus, as well as for sheer enjoyment.

So what’s in the bag?

These are just things that suit me. Everyone has different preferences, and it can take some time to work out what you might want in a kit, and what simply isn’t worth bothering with.

Here’s a rundown of what I have in mine.

Obviously, the main bag itself is a stim item. It’s an extra-large pencil case covered in gorgeous double-sided “mermaid scale” sequins. They’re fun to look at. Tactile and interactive too. As for what’s inside…

First, the things I’ve purchased with actual money:

  • Infinity hoops/kinetic flow rings: Oh. My. Gosh. These look and feel sooooo good.
  • Fidget spinners: I have two in this bag. One is yer classic plastic dooberry (a bit like this one) which I may or may not abandon, as frankly it’s not very good (it was very cheap); the other a “deluxe” metal spinner by Nomad that spins for aaaaaaages.
  • Fidget football polyhedron spinner: this particular metallic thingummy doesn’t spin for very long and is a bit flimsy (another thing that was super-cheap). But it kind of looks cool, and the individual coloured circles make a cool “pwoingy” noise when you wiggle them about.
  • ‘Iron Man’ helmet stress ball: squeezy proprioceptive anger release. Also good for maintaining strength and mobility in hands – something I struggle with because of some anatomical oddities. Plus…Marvel (I also have a Hulk fist on my desk at work).
  • Miniature slinky spring: fun to stretch, run fingers over and hold. The repeating coils are also soothing to look at. This one was from a multipack similar to this one, left over after we’d finished filling a load of party bags for my daughter’s last birthday party.
  • Tangle: one of the first “official” stim toys I bought. An old favourite, but these days gets less outing than some of the other more novel items. One thing that irritates me slightly, given my auditory sensitivity, is the clicky noises it makes when I’m fiddling with it – fine in a busy place, but not so great somewhere quiet.
  • ‘Unicorn poo’ glitter slime: comes in a pot, to keep it safe from glooping up the rest of the bag. Feels lovely and cool on the hands but leaves no mess. Squishy and squidgy. Sparkly.

Next, some free stuff (be creative. Look around your environment and see what you can find):

  • Pine cones: Fibonacci spirals! Patterns! Knobbly textured loveliness! Beautiful.
  • Larch cones: similar to above. But they’re also kind of delicate and pretty in a way that pine cones aren’t. More a visual thing than a tactile thing.
  • Seashell: more natural mathematical beauty. Knobbles, spirals, smooth bits, shiny bits, ridged bits. Lots and lots of tactile soothing loveliness. Calming colours.
  • Piece of packing foam: softer and squishier than a stress ball, this nevertheless provides a teensy bit of propriceptive stimulus, but is also fun to fold and unfold, wiggle around, or simply to run one’s fingers over.

As well as all of the above, there’s a sparkly “bag within a bag” (another visual stim in itself). This is for items that either:

  1. Smell and/or are balms/liquid, and would thus otherwise taint the rest of the stim kit;
  2. Are easily breakable (e.g. glass bottles);
  3. Are small and thus likely to be difficult to find in the midst of the main bag;
  4. Might get tangled up with other contents; or
  5. Need to be kept clean.

In here is where I keep:

  • Lip balm: nice to smell (I have a chocolate-y one), and good for keeping lips smooth and avoiding the scratchy feel of dry skin
  • Aromatherapy oils: good for a more intense (albeit only occasionally needed) fragrance hit – especially when there’s a need to block out more noxious nose-irritants. I have a couple of bottles of oil blends: ‘Less Stress’ (clary sage, lemon, lavender); and ‘Energise’ (peppermint, frankincense, lemon).
  • Handkerchief: the holdable soft fabric receptacle for the above-mentioned oils (sniffing straight from the bottle looks weird, makes my nose tingle, and means the cap is left off too long, which has the potential to cause deterioration to the active components in the oils.
  • Foam ear plugs (in a small plastic case): for when I need to dampen down noise, but noise-cancelling headphones just aren’t appropriate for whatever reason.
  • Communication necklace, from SpaceRobot Studio: to indicate to other people – usually when in autistic space – my level of willingness/ability to communicate verbally with others.

What else helps me?

In addition to these items, I always have handy:

  • noise cancelling Bluetooth headphones (plus something to play the music on, of course). Mine are Lindy BNX-60s, at just over £80 – my budget wouldn’t stretch beyond this, but they do the job well enough for my purposes.
  • sunglasses

They’re generally big-enough, frequently-worn-enough items for me not to lose them (thus far, at least…).

The other things that go everywhere with me are my bullet journal (learn more at the official bujo website), and my dinosaur pencil case, full of lovely coloured pens, pencils and fine liners. Doodling is a stim, but bullet journaling is another absolute life-saver in helping me organise my life, stay mindful, and keep as sane as possible.

When at home…

Over the summer, I also had made for me a weighted blanket and lap pad. These have been a revelation. If you want the low-down on why these are so helpful, Princess Aspien’s video on the subject is a good insight. They don’t come cheap (I couldn’t afford one for a very long time), and I recognise I owe my possession of these wonderful items to a certain degree of material privilege.

***

I hope this post is of some practical use to people.

I recognise that some items are more affordable than others, and this means that for some, it can be a struggle to meet your own sensory needs. If this is you, then I wish you all the best with finding something affordable that works, and I hope your circumstances get easier. In the meantime, look around your home. Look outdoors. Pebbles, seed cases, pieces of packaging (cleaned), bubble wrap, pine cones. Wherever you are, keep a lookout for something small and portable to stim with.

For everyone: I wish you well in finding the stims that truly work for you.


[Featured image description: Still life colour photograph, through warm dramatic “vintage” filter, depicting, in foreground: a sequin-coloured oversized pencil case, out of which spills folded “infinity hoops”, a black Tangle, a red-and-yellow stress ball in the shape of a Marvel ‘Iron Man’ helmet, a small three-pointed metallic fidget spinner, a fidget football, pine cone and seashell, a piece of grey foam, and other items partially in view. There is a smaller sparkly bag inside in which can be seen a small bottle of aromatherapy oil and a tin of lip balm. Behind these is a black bullet journal, and a red-zipped pencil case with in a colourful dinosaur print fabric.]

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.]

#TakeTheMaskOff: authentic vulnerability

Cartoon drawing of Mama Pineapple, a white female-presenting person with chin-length red hair. She is clenching her left fist in order to make her bicep bulge. Tears are streaming down her face.

One of the things I’ve always hated about myself is how easily I burst into tears, and how often I cry.

That’s not to say I’m ashamed of it. It’s my natural reaction to surprise, bad news, overwhelm, discomfort, confusion, and a whole range of other scenarios, situations and feelings. It’s just how I am.

The reason I hate it is not that it shames me, but because it draws others’ attention to me at times when I’m feeling especially vulnerable. And my very dramatic outward displays of emotion make me vulnerable. I am left exposed, demarcated, spotlighted, in a way in which others are not.

I’ve been crying a lot over recent months. I’m cagey about talking too much about the reasons for this on this blog, because while I’m often very candid and open on here, many of those who read my words know me in person, including some people I work with.

Currently I’m contending with huge amounts of change. I’ve lurched from one period of uncertainty to another. This particular dark cloud, while it has evolved and morphed in shape and outline, has been hanging over me for well over eighteen months. Its form has been given greater definition in the past couple of months, but still that form has yet to settle into a state of finality.

I’ve had bad news delivered to me, and many people around me, in very exposing, “public” settings.

I’ve had reassuring structure and routine ripped out from under my feet. I see gaping nothingness in front of me, however much others around me try to reassure me that the unknowns will come to an end at some point.

I’m experiencing a form of bereavement – not over a lost loved one, but over the loss of a particular combination of relationships, things, environments, and a way of being that I’ve loved, and that has made me feel supported, contented and happy for a good few years, even while I’ve contended with many difficulties elsewhere in my life.

Throughout it all, I’ve been told to remain professional, and to “try to use my coping mechanisms” to manage my distress.

But I’ve been unable to prevent myself from crying.

I’ve been unable to prevent myself having meltdowns. At work. At home. In public places.

It’s all too much.

My sense of vulnerability raises my already-pretty-extreme levels of anxiety.

How do others perceive me?

Can I truly be regarded as competent? Professional? Capable? Able? Trustworthy?

***

The truth is, I can be all these things, and vulnerable. Such qualities are not mutually exclusive.

Since my diagnosis, I’ve always been open about my autism.

My reasoning is that I struggle to be quiet about aspects of truth about myself; and that I simply wouldn’t want to be around anyone who looked negatively upon me as a result of knowing that I’m autistic. It’s a part of me, and by rejecting my autism, anyone who does so rejects me.

But my emotional vulnerability is as much a part of my autism as my sensory sensitivities, my pattern-spotting abilities, my attention to detail, and the deep joy I experience when working on things that interest me.

I am not ashamed of that vulnerability, but I now feel I need to go further than such a state of neutrality; of not-negativity.

I have started to embrace it as a fundamental personal truth.

Sometimes, it means – as someone I know recently put it – that I’m “taking one for the team” in more readily displaying those feelings that others around me feel internally, but are unwilling or unable to convey to the outside world. I’m raising awareness.

My vulnerability is authentic.

My vulnerability is real.

My vulnerability is human.

And – perhaps perversely – my ability to allow myself to be vulnerable makes me strong.

Crying is cathartic. The pressure is released. This can sometimes take hours, but it does go. And when my tears have all been shed, and my wailing and sobbing has quietened, I’m exhausted, spent; but the tension is gone.

I know I’m alive, I’m here, and I can carry on.

Right now, I can’t keep up appearances. I can’t pretend I’m fine. I can’t currently wear the mask of acceptable social interaction very much of the time. I’m having to cope with too much.

And while crying can be useful, and I’ve done the Very Helpful Thing of making others aware of how serious things are, no-one should be repeatedly subjected to So Much Stuff that they dissolve in a puddle of tears on an almost daily basis. It’s tiring. It’s not a modus operandi I’m keen on.

Hence time off work, and limited time online. I’m trying to keep my life as quiet as possible at the moment. I need to rest, recover, and recuperate.

But I’m still here.

I’m authentic, I’m vulnerable, and I’m human.