Article
I came to my autistic identity through the window. She came in through the bathroom window. Rather than finding the main door marked Autism (I imagine this to be painted in deep green with ornate carvings and some badass gargoyle knockers), I spent my childhood and most of my adult life walking through hallways and knocking on various doors marked ‘eating disorder’ or ‘anxiety’ or ‘PTSD’ or ‘post-natal depression’ or ‘you’re just too sensitive’. None of the rooms these doors led to felt like they completely explained my life experience. Eventually I stopped looking for a door, and walked away from the metaphorical hallway entirely.
Like many late-identified women, it was a family member’s diagnosis that drew back the curtains on my own identity.
I was reluctant to accept my family member’s new label at first, chiefly because what others considered unusual or symptoms of a disorder, I saw as normal (if slightly quirky) behaviour. I adamantly argued, “c’mon, the lights ARE pretty loud in here”, and was surprised to discover that, actually, most people can’t hear neons. Huh. We’re not so different, you and I.
Beyond the somewhat humiliating, deficit-counting game of diagnosis (I brought along a print-out of every social faux pas, meltdown or weird thing I’d ever done, a document my husband nicknamed ‘The Dossier’, which my assessing psychologist flipped through and remarked, “ooh, double sided…”), what actually allowed the slow-blooming realisation of my autistic identity to unfold was experiencing autistic culture.
My family member was autistic, so I wanted to find out everything I could about the autistic experience. I began to see myself in other autistic people – their conversation style, their niche passions, their writing, their song lyric quotes and Simpsons references. Especially Lisa, but especially Bart. I began to see myself in their music, their stims. And I thought, hey, these are my people. And I wondered, maybe I belong here. She came in through the bathroom window.
There are currently two popular models to conceptualise autism: the medical (pathology) model, and the social (neurodiversity) model. In recent years, the social model has gained considerable momentum.
People are identifying that autism is a difference, not a disorder, while still acknowledging how this difference disables autistic people from full participation in society.
This is irrefutably a Good Thing™ .
But I do have a small bone to pick with the “difference, not a disorder” camp, and it’s a semantic one (how very autistic of me). If we conceptualise autism as a difference, we’re still explaining the autistic experience in comparison to a default ‘normal’. While I believe this sentiment is well-intentioned, it keeps us centring the neuromajority.
In his 2010 chapter Autism as Culture, autistic scholar Joseph Straus asks, “If autism is a construction, who does the constructing?” Other than shared medical symptoms, or a mutual status of ‘diverging from the norm’, what gives autistic people a collective identity? Straus goes on to propose that “Autism is constructed by autistic people themselves, through the culture they produce (including writing, art, and music).”
I offer a big disclaimer here: the autistic experience is beautifully complex.
We have hyper-verbal folks, and non-speaking folks. Some do eye contact, some don’t. There are low support and high support needs. The sensory experience is wildly varying. Autism isn’t a monolith; it’s a diverse spectrum of experiences.
And yet within that spectrum is a prevailing and recognisable autistic culture, shaped by autistic people themselves, through the social spaces and art they create. Direct communication. A profound appreciation for detail. The need for things to be right and fair. Indescribable joy in texture, or a repetitive physical action. A quiet contentment in routine. Monologuing. The intense-gravity-pull of the attention tunnel. Noticing patterns. Speaking in gestalts. Going deep on a very niche topic. Parallel play. This is an incomplete list – I’m sure someone will let me know what I’ve missed in the comments. (Edit: letting people know what they’ve missed in the comments is autistic culture).
Not every autistic person will relate to every element of autistic culture, in the same way that not every Japanese person loves sushi.
Culture holds diversity; a constellation of experiences.
Importantly, recognising autistic culture doesn’t erase the very real support needs many autistic people have, it simply offers a different vantage point: what autism might look like if it weren’t defined in relation to neuronormative barriers.
Culture is a window. Seeing autism as a culture allows us to centre autistic experience as the ‘main character’ of its definition. This is crucial for autism acceptance – from others, and for ourselves.