Neuroqueer(ing) pleasure: Autism, sensation and kinship
By: Caitlin McGregor
When I was seven, my teacher got everyone in grade 2/3G to name one of our hobbies in front of the rest of the class. When it was his turn to share, a boy called Anthony said, “Crinkling sheets.”
Our teacher, who I remember as a bit of a jock – he refused to use any maths examples that didn’t pertain to AFL, even when asked to – said, “What do you mean?”
Anthony held out his hands, rubbing each thumb against its corresponding index finger, and said, “Bedsheets. Crinkling them.”
I felt stunned by recognition. Our teacher – did he scoff a little? – said, “Oh… kay then. Next?”
All images: Sofia Furió
Psychologist Silvan Tomkins argues that when a positive feeling is interrupted, without the interruption of our desire for that feeling, we experience shame.
“The essential condition for the activation of shame,” he writes, “is ‘I want, but… ’”
When I was in high school, our sports uniform included shorts made of what we called ‘microfibre’. If you folded the fabric in half between your index finger and thumb and rubbed it against itself at a particular angle, the fabric made a sound you could feel in your skin.
I would do so, obsessively, especially if I was stressed or thinking hard. Once, when I was in Year 8, I was absent-mindedly doing this with the fabric of my shorts during class when one of my classmates said, “Oh my God, what are you doing? Are you like, playing with yourself?”
Kids screamed and laughed, and I don’t remember what I said or if I tried to explain what I’d been doing, but I do remember how embarrassed I felt.
I remember thinking that the truth – that I’d been doing it because it felt good – was definitely not going to help.
There are lots of things I do that are ‘abnormal’, and that consequently can make other people feel uncomfortable.
The ways I experience and express distress or discomfort, for example, have caused me plenty of social problems.
But there does seem to be something about non-normative sources and expressions of pleasure, in particular, that provoke an especially spicy kind of ire.
I’m not sure why this is. Perhaps you might expect, within the pathologising frameworks we have for thinking about neurodivergence and disability, an autistic person to be distressed or uncomfortable.
Perhaps it’s more destabilising to think of disabled people having a good time.
Autistic pleasure and queer pleasure are kin in several ways.
Queer history is entwined with the history of autism, as well as with those of madness and disability more generally. Statistically, autistic people are more likely to be trans, non-binary or gender non-conforming than our allistic peers.
But I also think that autistic pleasure is queer, in and of itself. It’s queer in its non-normativity, in its subversiveness, and in its consequent proximity to shame and otherness. In its capacity to bust-open old ideas and reshape what we think of as good.
When it was new, the suggestion that I might be autistic changed how I experienced my body.
Curious about the possibility that this label could explain some of my differences and difficulties, I started paying attention to sensations I’d long tried to block out.
Sensations like so-called ‘background’ noise (all noise is foreground noise to me); the intensity of air moving past my skin; tiny visual details my eyes were drawn to if I let them be.
I gradually learnt to pinpoint where my meltdowns came from; what the triggers were, and how much energy I’d really spent white-knuckling through sensory overload.
In time, and with some good somatic therapy, the way I inhabited my body started to be led more by my own instincts than by my best guess at what might be normal.
Without thinking about it, I keep finding myself sitting on my haunches, focused on ants in the grass or fibres in the carpet.
Childhood memories come to me in these moments; memories of patterns in leaves and worms in the dirt. These are old pleasures, I realise; I’m relearning.
There is a seanfhocal, or Irish saying, that I like very much: Aithníonn ciaróg ciaróg eile. Literally translated, it means “a beetle recognises another beetle”.
Figuratively, it can either be dismissive – like “it takes one to know one” – or it can be a comment about recognising and gravitating towards kin, like “birds of a feather flock together”.
Many people from marginalised communities describe this feeling of clocking one another, and how joyous – how much of a relief – it can be.
In their newly published essay collection A Real Piece of Work, Erin Riley recalls being recognised as queer by the salesman at a bedding shop: “There is something deeply pleasurable in being seen and read as queer by those of the same ilk. The subtle references, the furtive nods on the street, an acknowledgment of shared otherness.”
Alison Kafer, in her 2013 book Feminist, Queer, Crip, puts it this way:
I know how my heart can catch when I see a body that moves oddly or bears strange scars. I know how my body shifts, leans forward, when I hear someone speak with atypical pauses or phrasing, or when talk turns to illness or disability. Part of what I am describing is a lust born of recognition, a lust to see other bodies like my own or like the bodies of friends and lovers, as well as a hope that the other finds such recognition in me.
My partner and I have taken to calling this feeling of recognition ‘beetling’.
“A beetle”, Brendan will say after we meet a new friend, or as we watch David Byrne on TV. Initially, this new habit we’d developed both filled me with joy and made me feel a bit uncomfortable.
Were we armchair-diagnosing strangers and acquaintances with autism? Wasn’t that invasive and reductive?
In her 2020 book My Autobiography of Carson McCullers, Jenn Shapland wrestles with the sticky project of searching for queerness in the lives of historical figures.
I find myself returning to this book again and again, as I grapple with questions of labels and kinship and parasociality (one-way relationships) in my own work.
“It’s not all that important to me to define what it is to be a lesbian—constant shifting, the ever-new,” Shapland writes; “—but I can’t help but want to know who else is at the table with me, who I can call kin.”
While I will continue to wrestle with these questions, probably forever, I do know that ultimately, beetling is not about checking someone’s traits against a list of diagnostic criteria to see if they match.
It’s an instinctive feeling of kinship; a neuroqueer, ‘deeply pleasurable’ resonance that takes place in the space between people.
I wish I’d told Anthony, back in 2/3G, that I knew what he meant.
That I liked crinkling sheets, too.
In the house I live in now, I crinkle sheets often enough that it has its own term.
We – my partner, my son and I – call it ‘jooging’. This is pronounced with a soft j, like you find in the French word je, and the ‘oo’ sounds more like ‘book’, not ‘boo’.
‘Joog’ can be either a transitive or intransitive verb; that is, a fabric can be said to ‘joog’ if it produces a particular sensation when ‘jooged’ by a person. If a fabric ‘joogs’, it is known as a ‘jooga’ fabric.
Some contemporary examples of jooga fabrics include: two pairs of my running shorts; the inside of my favourite jacket’s pockets; a particular button-up shirt of my partner’s; and a pillowcase and blanket set I bought from Kmart in 2016.
I keep the pillowcase in my sock drawer, for when I want to feel good.
I found out I was autistic after decades of looking for explanations – and solves – for parts of my experience that caused me significant stress, fear, isolation and pain.
What I wasn’t expecting was for that explanation, when I finally found it, to throw pleasure into sharp relief too. The pleasure of being by myself. The pleasure of saying no. The pleasure of friendship with non-human animals. The pleasure of making up new words for things.
The pleasure of routine. The pleasure of intense emotion. The pleasure of saying yes. The pleasure of following odd little blisses.
I was raised to find more value in struggle and pain than in joy, and I find it hard to value my pleasure for its own sake.
I still feel spikes of shame when I’m caught unreservedly enjoying myself, like I must be doing something wrong.
But I’ve been trying to remind myself that it’s in my witnessed moments of pleasure, as well as my more difficult moments, that someone else might think to themselves, with some joy and relief – “Oh! There’s a beetle.”
Caitlin McGregor is a writer, artist & editor based on Dja Dja Wurrung Country. Their work has been published in a range of magazines and literary journals, including Meanjin, Kill Your Darlings, Going Down Swinging, The Big Issue and Australian Book Review. In 2022, they were the inaugural winner of the KYD Creative Nonfiction Essay Prize. They’re currently undertaking a PhD in autistic poetics.
This article first appeared in Archer Magazine #19, the PLEASURE issue.