Mad Pride

Someone asked me a few months ago what topic I was researching for my PhD, and when I said autistic nonfiction writing, they replied, ‘That’s very trendy at the moment.’ Being autistic is a permanent part of who I am, and nonfiction is both my favourite literary form and the basis for most of my research. The idea that either of these things could be considered a ‘trend’, rather than topics worthy of sustained (lifelong?) study, made me bristle.

They weren’t wrong, though. Over the last couple of decades, an increased understanding of how autism can present, particularly in girls and women, has led to more diagnoses, as well as heightened visibility and public discussion about and by autistic people. This has also, predictably, led to the publication of many memoirs written by autistic people – and these have been overwhelmingly, though not exclusively, written by white women diagnosed as adults.

Examples of such memoirs published in the English-speaking world within the last seven years include: Odd Girl Out: An Autistic Woman in a Neurotypical World by Laura James (2017); Autism in Heels by Jennifer O’Toole (2018); But You Don’t Look Autistic At All by Bianca Toeps (translated from Dutch to English by Fay Maccorquodale-Smith, 2020); Late Bloomer: How an Autism Diagnosis Changed My Life by Clem Bastow (2021); Growing in to Autism by Sandra Thom-Jones (2022); and Strong Female Character by Fern Brady (2023). Then there’s Different Not Less by Chloe Hayden (2022), which differs slightly from the above memoirs in that Hayden was diagnosed as a child rather than as an adult; Love and Autism by Kay Kerr (2023), which is more reportage and interview-based than memoir, though it does have autobiographical moments and sections; Letters to my Weird Sisters by Joanne Limburg (2021), which is a memoir-in-letters to possibly autistic women throughout history; Divergent Mind: Thriving in a World That Wasn’t Designed for You by Jenara Nerenberg (2020), which takes Nerenberg’s diagnosis as a jumping off point for a more self-help type approach; and Hannah Gadsby’s Ten Steps to Nanette (2022), a memoir that includes reflections on Gadsby’s autism without being exclusively focused on it. Five of these examples – Late Bloomer, Growing in to Autism, Different not Less, Love and Autism, and Ten Steps to Nanette – are books that have been written by Australians, and published in so-called Australia within the last three years.

We now have another: originally written and published in Swedish, Clara Törnvall’s The Autists: Women on the Spectrum (2023) has been translated into English by Alice E. Olsson and was published this year in Australia by Scribe. Törnvall was diagnosed as autistic at the age of forty-two, and The Autists takes her own experience as a lens through which to explore the phenomena and experiences of autistic women more generally. Its research is wide-ranging, encompassing history, literary analysis, statistical information, neuroscientific discoveries about the structure and function of the brain, and extensive interviews with other autistic women, as well as with neuropsychologists. I was particularly delighted by Törnvall’s chapter on language, ‘Too Much Faith in Words’ – ‘What might an autistic metaphor look like?’ she asks, and I started scribbling wildly in my notebook – and grateful for the chapter ‘School and Work’, which focuses on the trauma many autistic people encounter in institutions of labour and education.

The Autists felt deeply familiar. By this I don’t just mean that I saw my own experiences reflected in it, which I did. I mean that I kept having déjà vu – as if I’d read entire sections before, as if I knew what was coming next. In fact, I was rarely surprised by what did.

I read a lot of writing about autism, and some overlap in style and content is inevitable. However, when the sixth autistic memoir (or memoir-adjacent book) is published in Australia within a three-year period, I think it’s an opportunity to ask some important questions: what kinds of stories are being told about autism, and why? Which of these stories are being platformed by commercial publishers? Why is memoir so often the genre of choice for the telling of these stories, and what impact does this choice of literary form have on the answers to these questions?

As a book specifically about autism and gender, and authored by someone diagnosed with autism in adulthood, The Autists is particularly close in subject to Bastow’s Late Bloomer and Thom-Jones’ Growing in to Autism. I found it instructive to closely read and compare these three books in an attempt to be more precise about the similarities between them and get a better sense of the features of this current ‘trend’ in Australian publishing.

While all three books combine elements of memoir and research, each covers ground that the others do not, and is a strong book in its own right. The Autists is the most heavily informed by extensive interviews with other autistic people, and includes sustained literary analysis of work by possibly autistic writers such as Emily Dickinson, Beatrix Potter, Lewis Carroll, Virginia Woolf, and Simone Weil; Late Bloomer is the most in-depth when it comes to the author’s personal experiences, examines autism’s relationship to queerness, and is frequently hilarious; Growing in to Autism has the most specific and practical advice for other autistic people and the people in their lives. Growing in to Autism also spends time looking specifically at the experience of parenting as an autistic person, rather than just the experience of being the parent of an autistic person – a topic which is harder to come by in discussions about autism, and which I appreciated deeply.

As the first autistic memoir I read, Late Bloomer transformed my understanding of myself, and it’s not an exaggeration to say that it changed my life. I have no doubt that all the forementioned autistic memoirs have changed, and will continue to change, other autistic lives too – either as a result of autistic readers seeing themselves reflected in the stories and descriptions, or non-autistic readers learning more about what it can be like for autistic people to navigate the world.

My intention in comparing these books is not to diminish their individual accomplishments. What I do want to call attention to is the fact that, despite their differences and distinctive strengths, a close reading of these three books throws into sharp relief some of the sameness in the ways autism is currently being framed and written about, particularly by autistic writers with significant platforms (including books, but also through journalism and social media) for their stories.

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None of these books seeks or claims to represent a universal experience of autism – in fact, all three books stress that they could not possibly do so, even if they wanted to. However, as a collection of recently published books on the topic, they start to give the impression of an autistic super-narrative taking shape around a new archetypal figure: not the white boy who loves trains, but the professional woman or non-binary person who always knew they were different, but didn’t understand why until burnout led them to a neuropsychiatric diagnosis. This narrative – the telling of which is structured by the literary and cultural traditions of memoir – conjures up a particular kind of authorial persona, whose choice of language, cultural references, theoretical frameworks, and relationship to their assumed reader are shared, to varying extents, by all three books.

The Autists, Growing in to Autism, and Late Bloomer all address many of the same topics at corresponding points in their structure. Late Bloomer’s second chapter is called ‘Well, How Did I Get Here?’, while Growing in to Autism’s first section is called ‘How Did I Get To This Place?’; The Autists covers similar ground in its Introduction. All three books dedicate a whole chapter to sensory differences: Chapter 6 of The Autists is called ‘An Attack on All Senses’; Chapter 5 of Late Bloomer is called ‘Sensory Overload’; Chapter 5 of Growing in to Autism is called ‘That Smells Painful: Sensory Hypersensitivity’. Similarly, Chapter 5 of The Autists (‘Lost in Thought’), Chapter 6 of Late Bloomer (‘Walk the Dinosaur’), and Chapter 9 of Growing in to Autism (‘I Just Need One More: Hobbies, Interests, and Obsessions’) are each dedicated to the topic of special interests. Both Late Bloomer and The Autists include an early chapter on the history of autism as a term and diagnosis (‘A Brief History’ and ‘Holy Fools and Refrigerator Mothers’, respectively), and they share many of the same cultural reference points: Hans Asperger, Leo Kanner, ‘refrigerator mothers’ (a psychoanalytic theory popular in the 1950s and 60s that suggested autism was caused by emotionally ‘cold’ and uncaring mothering).

On a more granular level, the similarities between the language and examples used in these books are striking. Törnvall writes, ‘For as long as I can remember, I have felt different’; Thom-Jones describes knowing she ‘was different from a young age’, and Bastow writes that ‘it’s nearly impossible for me to recall a time in my life when I didn’t feel, to some degree, alien to the people around me’. All three list the diagnostic criteria for autism spectrum disorder from the latest edition of the Diagnostic and Statistical Manual of Mental Disorders. Törnvall claims, ‘My diagnosis is the best thing that has happened for my self-esteem … Only once I received my diagnosis did I feel certain that I was in fact a real human being’. Similarly, Thom-Jones and Bastow both describe their diagnoses as ‘life-changing’. All three authors recall realising that girls can be autistic, which is followed by the retrospective recognition of the ‘signs’ (Törnvall and Bastow) or ‘clues’ (Thom-Jones) that had been present in their lives all along. All three texts spend time myth-busting the idea that autistic people don’t experience empathy: ‘On the contrary, autists feel very strongly for others, and many show great civil courage,’ writes Törnvall; ‘Actually, many autistic people are very empathetic,’ writes Thom-Jones; ‘Many Autistic people will tell you that the opposite of the misconception is true: if we “suffer” from anything, it’s too much empathy,’ writes Bastow.

This is not an exhaustive list, but it does start to give an idea of what the emerging tropes and norms of autistic memoir might be. Overall, despite the non-linear structure of each book, the narrative arc of a particular kind of life story emerges: the feeling different from others in childhood, the burnout leading to official diagnosis in adulthood, and the subsequent looking back on one’s early life as the pieces all fall into place. There is a strong emphasis on the impact of neuropsychiatric criteria and diagnoses. There are sections dedicated to special interests (the authors’ childhood ‘SpIns’ are birds, stamps, and dinosaurs, respectively) and sensory sensitivities, which are described in strikingly similar ways: Törnvall writes that ‘being overloaded with lights and sounds is painful, and I hear everything’; Thom-Jones explains that ‘when I am in an environment with multiple sounds, I hear all of them and often at the same (or very similar) volume’; Bastow writes that ‘the hum of electricity in the walls or the jingle of the lightbulbs and fluoro tubes would put me on edge, and still does’. The prevailing tone of these anecdotal moments is intimate, yet they fit within an overarching didactic register that intensifies as the authors push back against common misconceptions: that autism only presents in boys, that autistic people are all good at maths, and that autistic people lack empathy. In this way, the wider cultural shift in the mainstream conceptualisation of autism, especially along gender lines, plays out in these books on a more individual, personal level.

Am I wishing for the impossible – or at least being unreasonable – in hoping for a book about autism that doesn’t predictably include all these features? As Bastow writes in Late Bloomer: ‘To grasp Autism in a modern context, it’s impossible to avoid mentioning that tome [the DSM-5]’. Maybe we’re not yet at a stage of public understanding where books about autism can afford not to list the diagnostic criteria for autism spectrum disorder, or to have a chapter about sensory sensitivities, or to tell the reader how very empathetic we actually are. Maybe part of the work that these books are doing is to reach that next stage of mainstream understanding, so that future books about autism won’t have to explain the same things over and over again. Maybe, though, autistic writing about autism would have more interesting and novel things to say (and to teach) if it wasn’t taking on – or being asked to shoulder – the onus of being so explicitly educational.

There are other reasons that we’re getting such similar books about autism. An obvious one is a lack of diversity in representation – The Autists, Late Bloomer and Growing in to Autism are written by autistic people with similar backgrounds. All three authors are white; all are speaking autists; all had established careers, either in journalism (Bastow and Törnvall) or academia (Thom-Jones), by the time they were diagnosed. All three had the means to obtain official diagnoses, which is certainly not the case for all autistic people; nor is it the case for all of us that those processes, if we do access them, are trauma-free and affirming. Diagnoses can cost thousands of dollars; the neuropsychologists who administer them can carry their own biases about a rapidly evolving and widely misunderstood condition; and many intersections of autism with other marginalised identities, most notably racial ones, are still under-researched and poorly understood. All of these factors mean that diagnoses are only accessible and helpful to a small subset of the autistic population – one that is currently overrepresented in commercially published autistic writing.

Another reason for the emergence of these similarities has to do with literary form, which is, I think, related to the issue of representation. Perhaps tertiary-educated white people are more likely to write memoir; perhaps publishing houses looking for autistic memoirs are more likely to commission tertiary-educated white people. But it’s also a separate question, to do with the structures and tropes of memoir writing itself. I’m aware of an irony here – in criticising sameness, I’m going to echo Maria Tumarkin’s essay on motherhood memoirs (maybe we’re all doomed to write slightly different versions of each other’s work and there’s nothing I can do about it):

writing about mothering has become constrained, made predictable, by certain memoiristic tropes, vocabularies, intensities and scales. […] In fact, it could be that memoir in its current iteration is not a strong enough form to blast things open. What is required is formal innovation, hybridity of form, opening up of language, a getting at and through motherhood in unexpected ways. The coupling of motherhood and memoiristic writing feels at the moment too tight, overly melded, too much like a foregone conclusion.

Motherhood and autism share, as socio-cultural phenomena, the situation of having long been defined by external, normative structures – the cis-heteronormative family, the psychiatric-industrial complex – that don’t take individual experience into account. The instinct to write back against these external definitions with first-person accounts makes a lot of sense. But memoir, especially as such a popular genre, comes with its own predetermined structures and cadences; the research-memoir hybrid, so popular in contemporary autistic writing, no less so. There’s the redemptive narrative arc that a life story tends to take in a memoir, for example; in this case from burn-out and confusion to revelation-via-diagnosis. While these books all avoid the ‘miraculous cure’ that Mark Osteen has identified as a recurring ‘rule’ of writing about autism (2013), this drive towards personal revelation carries its own powerful structuring force, one so entrenched in our literary traditions that it can arguably be traced to St Augustine’s Confessions, widely considered the first Western autobiography ever written. In the research-memoir blends, there’s also a reliance on, and privileging of, certain types of ‘expertise’ – in The Autists, as well as in Growing in to Autism and Late Bloomer, this includes neuropsychiatric theories about what autism is and how it functions. When similar life stories are mapped onto similar frameworks of ‘expert’ knowledge, you end up with similar books.

 In her book Autistic Disturbances, Julia M. Rodas writes:

Geared as the [memoir] genre is to audiences that are overwhelmingly neurotypical and vetted by publishers with an interest in commercial sales, autistic autobiography typically adopts surprisingly commonplace rhetoric and language, effectively translating autistic experience and identity into largely conventional terms.

There’s a danger here of casting certain ways of thinking and writing as ‘not autistic enough’, which is an accusation often levelled at autistic women and gender-nonconforming people, and one I am loath to repeat here. However, I do think it’s worth considering these ways in which memoir, as an established, marketable, mainstream genre, may be shoehorning autistic storying into conventional cultural and literary frameworks, diluting its potential to ‘blast things open’.

What I have come to hope for, when I open yet another autistic-authored nonfiction book about autism, is a rejection – better, an explosion – of the frameworks and structures that we’re currently leaning on to explain what being autistic is like. I don’t want to see slightly different versions of the same sentences and chapters that I’ve seen in a dozen other books. I don’t want any more obligatory nods to the evil psychiatric manual; if I never see another sentence start with ‘In order to be diagnosed with autism spectrum disorder, a person must’, it will be too soon. And I don’t want to read any more narratives that start with awkward social interactions in childhood and end in burnout and revelation in adulthood – not because these stories aren’t true, but because we’re up to our ears in them now, and I’m hungry for some different thinking.

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What would autistic storying look like if it wasn’t defining itself through and against psychiatry, but establishing itself on its own terms? What would autistic writing look like if instead of slipping into an established popular genre, it invented its own literary forms? If we stopped spending energy and pages directly contending with outdated stereotypes, which countless books and articles have debunked by now, what would we have to say?

In Authoring Autism, autistic writer and scholar Remi Yergeau writes that autistic bodies ‘are the bodies that not only defy social order, but fail to acknowledge social order’s very existence. Autism, then, poses a kind of neuroqueer threat to normalcy, to society’s very essence’. It’s desirable to be normal; I don’t want to pretend otherwise. Being seen as normal makes us safer, in very tangible ways. I keep returning to Törnvall’s comments about how she felt when she received her diagnosis: ‘I went from failed neurotypical to regular autist. Only once I received my diagnosis did I feel certain that I was in fact a real human being.’ So much of the relief that autistic people describe feeling upon realising that they’re autistic is the relief of fitting into a pre-existing narrative: here is a version of normalcy that includes you. I felt this relief when I realised, too. But it’s also deeply disturbing to think that anyone needs a psychiatric diagnosis in order to believe that they’re a human being; this cries out for a challenge to structures and institutions – medical, educational, or literary – that pathologise difference, rather than a celebration of diagnoses. This fact doesn’t escape Törnvall: ‘Our knowledge of psychiatric diagnoses is growing, while the space for being different keeps shrinking,’ she writes. ‘The view of what is normal and what is aberrant eats its way into everything.’

Alongside the desire to belong – to identify with some kind of normal – I’m also drawn to the disruptive potential that Yergeau identifies as part of the autistic condition. I understand why we’re writing autistic stories that map themselves through and against existing social and cultural norms, and why a recognisably autistic normal is emerging – but I want to see this ‘neuroqueer threat to normalcy’ reflected more strongly in our writing, in our grappling with what autism is and could mean. Much of this kind of writing has been happening already; take Yergeau’s work on neuroqueer rhetoricity, which advocates for autistic stories as ‘inventional sites’, and for ‘the potentialities of autistic stories and gestures [for] neuroqueering what we’ve come to understand as language and being’. I’m thinking of the work of blogger Mel Baggs, whose 2007 video ‘In My Language’ challenges neurotypical assumptions about ‘what gets considered thought, intelligence, personhood, language, and communication, and what does not’. I’m thinking of autistic storying that isn’t being commercially published, but occupies the self-publishing platforms of zines and blogs (‘While new media scholars bemoan the death of the blog,’ Yergeau points out, ‘the autistic blogosphere thrives’). I’m thinking of autistic writing that aligns itself with other marginalised people and communities; writing that recognises and deeply values the fact that ‘like any inventional movement, autism’s is configured by its coalitional histories’ (Yergeau). Autistic writing that, rather than mapping itself through and against neurotypical norms, identifies itself as disabled and Mad.

There is a moment in the closing chapter of The Autists that stayed with me long after I’d finished the book. Törnvall is describing a weekend she spent as an inpatient at a psychiatric facility after her divorce. Admitting that she ‘look[s] back on [the weekend] as a comedy’ despite her despair at the time, she describes some of her fellow patients in a passage that I think is supposed to be light and funny: there’s an old man who looked like a corpse, a woman who wanted to take her pants off, young girls ‘with cuts all over their arms and black hair hanging lank and greasy under their hats’. And then there’s this:

There was a leader, of course, a woman who spoke incessantly with everyone. I was terrified of accidentally meeting her gaze, prompting her to go after me. She walked around raging at the Pride parade, saying it was unfair that the gays and the dykes had their own procession, that we should have one, too, a parade for mad folk – a parade for the mentally ill straight through town is what we should have.

Törnvall doesn’t dwell or comment on this moment at all. She immediately follows it up by describing her weekend at the psych clinic as being ‘like fiction, a long unreality’, and then we’re back reading about her divorce. My impression was that these opinions about a Pride parade from this fellow patient were included just to give the description of the psych clinic a bit of colour. But she’s bloody spot on, this raging leader. Mad Pride is a movement that exists; it’s one that demands new frameworks for how we think about mental illness, and challenges social norms and the supremacy of the psychiatric-industrial complex. It poses a genuine threat to the status quo, and to neurotypical assumptions about what it means to be human. Here, portrayed briefly as the ‘raging’ opinions of a madwoman that Törnvall meets in place of ‘unreality’, there is a glimpse of a reality I’d love to see more autistic writing strive for: a Pride parade for mad folk, straight through town.