I moved to Ireland in my own chaotic way on September 12, 2001.
Too disorganised to supply Bank of Ireland with my old banking records, I was sentenced to six months with a debit card that only worked in person, and while Ireland’s high streets seemed full of the same brands and shops I’d known in England, I had not anticipated that retailers with large LGBT book sections in Bristol had deemed this category irrelevant to their Irish customers.
And so I found myself sending an email to Emma Donoghue asking where I could find her books in Dublin. She graciously replied, directing me to the iconic Books Upstairs, then opposite the Trinity gates, where I would reliably find her books and countless others for decades to come.
Today’s LGBT fiction landscape doesn’t require asking around. As I have just taken delivery of the first volume of the queer young adult graphic novel Heartstopper, as Gaeilge, it seems impossible that it was once such a treasure hunt, and so recently.
The swell of published LGBT voices and stories has been critical to our culture. But before we were able to have our own stories published widely, stories were being written about us by others — often in ways that harmed us. Early lesbian pulp novels, for instance, were primarily written by men and often troublingly framed lesbian relationships as the result of predatory gender non-conforming lesbians manipulating gender-conforming women.
Similarly, for decades now, we have seen stories about autism featuring autistic, or ‘autistic-coded’, characters on bookshelves and on our screens, but many are not written from a place of lived experience and feed into stereotypes that damage us. These portrayals are all external, leaving internal experiences of autism unelucidated.
Many autistic adults have long made their livings working with narrative and characters and theme. Novelist and poet Nuala O’Connor says that all her heroines are autistic, like her, though they are not named as such. There is also now a wave of new stories being told by autistic adults who seek to explicitly name and unravel autistic experiences that have been suppressed and misrepresented both in fiction and in life.
The 2023 Booker-longlisted novel All the Little Bird Hearts, by Viktoria Lloyd-Barlow, tells the story of Sunday, an autistic single mother living in the Lake District in the 1990s. She is explicitly autistic, as is her creator, but given the era of her story, it is not something that Sunday herself can ever know. Sunday does know she is different, but she isn’t granted a conceptual framework to explain her reliance on white foods, her need to follow a 30-year-old etiquette book, or her rigid devotion to Sicilian folklore.
And so Sunday’s life, crafted on the usual scaffolds — her family, her home, her neighbours, and her work — is revealed to us through her own experience. As observers, we watch while Sunday mentally queries the 1959 etiquette manual she has memorised, carefully determining the correct behaviour for a given social encounter. We are shown how she experiences perceiving and meeting a new person, how she paints images of her neighbour Vita, in her mind, extrapolating them and processing them into expectations. We learn how Vita’s manner of speech brings Sunday a sensory delight, as she replays her neighbour’s pronunciation and rhythms of speech as a form of stimming, though only in her head out of learned ‘masking’ restraint.
‘Hello! I am Vita,’ said the fragrant little woman who stood on my doorstep.
Duh-duh! DUHHH dee dee-dee, I imitated silently, searching for patterns that might suggest another county—or country—of origin, or a social position. It helps enormously to use my fingers in the style of a conductor when I listen to conversation, but I have found this can distract and perturb the speaker.
There is no record of C.S. Lewis ever saying or writing ‘we read to know we are not alone’, but Anthony Hopkins does say it while playing Lewis in the 1990s film Shadowlands, and it’s a useful sentiment regardless of its oft-misrepresented origin. I believe that we are often drawn to stories that expose the quiet realities we may never otherwise know we share with others, but that we also read to perceive the world through altogether different eyes—which autistic people have been doing in almost all of our reading, for a very long time. It seems fair that others should now see our stories through our own eyes.
‘Hello! I am Sunday.’ As I said my name, I stepped backwards to create space between us. I am constantly reversing away from people; the whole world is a revolving series of rooms I have walked into by mistake. And I am never allowed enough time to settle, but am instead called out into another room, which demands another, unknown set of behaviours.
I don’t have insight into how neurotypical people may perceive Sunday’s reversing behaviour, but given my own experiences over more than a decade of reversing away from the touchy public at work, I can attest that it is not generally perceived as a signal to allow more space, or at least not one which merits concession. Obvious to Sunday and to myself, it is completely indecipherable to those (otherwise pleasant) people who reliably close the created distance, as though reversing were an invitation, not a retreat.
Viktoria Lloyd-Barlow wrote a first version of All the Little Bird-Hearts as part of her PhD thesis, along with a research paper, titled ‘Dear Neurotypical People: The autoethnography of an inarticulate subject’. It’s not just the novel, but the research paper too, that demonstrate the curiosity and thoroughness with which Lloyd-Barlow approaches her work, itself an example of the power of autistic monotropism—unusually intense specialist interests, even in creative pursuits.
Like many of autism’s characteristics, monotropism has been understood primarily as a deficiency relative to the norms of neurotypical brains.
As Lloyd-Barlow says in ‘Dear Neurotypical People’:
The traditional methodologies of autistic investigation rely on the surveillance of autistic subjects; such acts of translation naturally privilege a discourse of pathology. Autism is measured primarily via an evaluated lack of adherence to neurotypical norms; the condition is subsequently reduced to a series of impairments which require intervention and alteration.
It is likely that the first description of what we now call autism was published by a Russian child psychiatrist, G. E. Sukhareva, in the mid 1920s, whose research was probably seen by Austrian physician Hans Asperger before Asperger’s own better-known 1944 publication, which itself came a year after another Austrian physician, Leo Kanner, published his research on the topic. Sukhareva’s pre-Third Reich contributions went largely unrecognised in the West until they were finally translated into English in the late 20th century.
Over time, the distinguishing criteria have remained largely unchanged: the World Health Organization outlines persistent ‘deficits in initiating and sustaining social communication and reciprocal social interactions’ and ‘restricted, repetitive and inflexible patterns of behaviour, interests, or activities’.
There are many other common autistic experiences and behaviours, ranging from sensory seeking or sensory avoidance to echolalia (the precise repetition of words spoken first by someone else); poor interoception (difficulties accurately assessing bodily signals, for example, thirst, hunger, pain); self-stimulatory behaviour or stimming, often involving hand flapping, vocalisations, or the use of objects such as fidget toys; and meltdowns, which can be mistaken for temper tantrums and panic attacks, but are unique in presentation and cause.
Hans Asperger’s alleged role in the Third Reich included determining which disabled children were sufficiently gifted to be useful to society and which were to be sent to the Am Spiegelgrund clinic to be killed. The distinction he made, between autistic children with high intelligence and more convenient support needs and those with needs that exceeded the Nazi perception of reasonableness, thematically informed the basis for the diagnosis of Asperger’s syndrome for decades. In most English-speaking countries, Asperger’s syndrome is no longer a recognised diagnosis, but the concept of Asperger’s syndrome remains our dominant cultural image of autism.
For a very long time, popular portrayals of autistic people were of boys and men, or occasionally women with ‘extreme male brains’; we were socially awkward, limited in our experience of affection, and often obsessed with unusually narrow or peculiar interests (monotropism), which sometimes resulted in savant-like abilities in a specialist subject. If our expertise is expressed in intricate and lifelike drawings, we are celebrated. If that expertise is the minutiae of ceiling fans, we are avoided at parties.
Lisa Sanders, writing in the New York Times in 2009, asked whether or not Sherlock Holmes could have been autistic. The Sherlock Holmes of Arthur Conan Doyle’s creation (1887) pre-dates our modern definition of autism, but on screen, at least, there are contemporary re-imaginings of a likely neurodivergent Holmes, as well as characters inspired by him. Benedict Cumberbatch’s Sherlock and Hugh Laurie’s House, M.D. are virtually identical characters sharing their casual misanthropy, prodigious deductive reasoning, and substance abuse. Tempe Brennan in Bones, the TV series, is a socially awkward, monotropic, forensic anthropologist, and was explicitly created as an autistic character, while the Tempe Brennan of Kathy Reich’s original books is a well-educated neurotypical woman who is good at her job.
While intensive expertise is often a feature of monotropism, monotropism is so much more than that. It is like a contextual filter that sits between us and our lives, colouring our experiences, thoughts, and relationships, like Sunday with her Sicilian folklore. Her world is interpreted within this framework, and yet even her demonstrably socially adept neighbours are at a loss as to how to engage with this:
I told him the folklore that I had remembered when I woke that morning on my sofa to find Vita gone. ‘In historic Sicily, when a husband awoke to find his wife gone, he knew she was a witch to be dealt with. So, he would go to the maga and ask for a way to fix his wife, even if it meant killing her. One man was told to remove the magic salve that his wife kept under the bed and to replace it with a plain ointment. That night, when his wife jumped from the window, covered in the salve and ready to fly, she instead fell heavily down to the ground. Her husband found her lying in the street below with broken bones, and she never flew again. Rollo said nothing, but Vita, who I did not realise had been listening, cut in smoothly. ‘Goodness, Wife, she said. ‘What are you talking about?
One of the best known modern literary works featuring an explicitly autistic main character is Mark Haddon’s 2003 novel The Curious Incident of the Dog in the Night-Time (the title itself a nod to Holmes). The main character is a 15 year old boy, who is supposed to have Asperger’s syndrome, but unfortunately, the author did not thoroughly research autism. The end result is a controversial book that features an apparently autistic child committing an alarming act of animal cruelty. Margaret Atwood published Oryx and Crake that same year, a book where Asperger’s syndrome is casually paired with a corporate eugenicist conspiracy to eliminate the arts and humanities (and most humans), where autistic people are valuable because we are stereotypical mega-geniuses who lack social or recreational needs and can work singlemindedly without ethical objections, ultimately including being all in on genocide.
If there were many thousands of books featuring diverse autistic characters then it probably wouldn’t be so striking that one well-known story features an autistic teenager with potentially psychopathic traits or that ‘Asperger’s U’ is where Atwood imagines human automatons are prepared to serve eugenicist corporate interests. But when there are so few portrayals of any marginalised group, each portrayal projects an outsized image of its subject.
As it stands, there are still so few books out there featuring autistic characters that much like during the advent of lesbian pulp fiction, people are willing to squint to see themselves in even the most warped of portrayals.
I’d be lying if I said that Camus’s L’etranger wasn’t one of the first books that made me look twice. Camus’s Meursault isn’t aspirational, and he does not meet the autism diagnostic criteria, but he is different enough, and crucially, atypical in ways I had not seen elsewhere. Lucy Maud Montgomery, best known for Anne of Green Gables, wrote many heroines who speak to neurodivergent readers, but Emily (Emily of New Moon) is the character who best meets the actual autism criteria. Emily’s story is often as effusive as Anne’s, but it is infused with mystery, both supernatural and social. Emily is undeniably odd, rigid, and single-minded in her writing, while all her positive social interactions occur with characters who have been deemed unusual in some way.
‘That will do, Emily. You have said quite enough.’ And Aunt Elizabeth sailed on into the kitchen majestically, leaving Emily momentarily wretched. She felt that she had offended Aunt Elizabeth, and she hadn’t the least notion why or how.
We are in an entirely new era now. The first generation of children who were able to benefit from the earliest pushback against abusive therapies, institutionalisation, and deficit-based models are old enough to be telling their own stories. And those of us whose childhoods were an endless recitation of ‘not living up to potential’ are gaining new understandings of ourselves, and some self-compassion, with late-in-life diagnoses, which are being reflected increasingly in literary work.
The first book I read with an explicitly-named autistic adult main character was Chuck Tingle’s horror Camp Damascus. Chuck Tingle, whose niche erotica book covers could be mistaken for absurdist memes, is himself autistic, just like this book’s main character, Rose. True to its genre, Camp Damascus isn’t in the business of realism, but Rose herself is an authentic and compassionately portrayed autistic adult. It is because she is autistic that Rose can be the hero in her own story, rather than in spite of it.
Other things I’ve learned:
Around 150,000 people die every day across the globe, Martina being one of them.
Cotard’s syndrome is a rare mental disorder that makes people believe
they’re dead.
The Turritopsis dohrnii jellyfish lives forever. As far as science can tell, it’s the only immortal species on record.
I’ve buried myself in death facts, devouring everything I can find on the subject.
Rose’s self-recitation of facts she’s sought out and committed to memory shows the reader a new perspective on that externally perceived autistic depth of knowledge, showing seeking and learning is both a joyful activity, and a tool with which Rose processes her experiences, including grief, in this example.
Holly Smale, the author of the bestselling Geek Girl books, published The Cassandra Complex in 2023 after her own diagnoses with autism and dyspraxia. The novel is a light, active story that plays with the rom-com genre, featuring a protagonist who doesn’t know she’s autistic, but is the only character who doesn’t at least suspect it. Cassandra’s feelings all have correlated colours, and she wears the same outfit in different colours every day, with specific shades assigned to each day of the week. This ends up working in her favour, and while she has her issues, in no way is she portrayed as deficient. ‘I do not have to weave my story, over and over again, and it is not—and never should be—told by other people’, she reminds us.
The prose of The Cassandra Complex is efficient, but Smale doesn’t miss opportunities to add casual poetry to the autistic experience, often through sensory details. Cassandra experiences a common kind of psychic paralysis colloquially known in autism spaces as ‘waiting mode’ when anticipating an event or appointment: ‘I always wait with my whole body.’ (I felt this sentence with my whole body.)
While cultural discussions of autism often focus on our brains as the source of how we think, our brains also govern our senses, and so thorough portraits of autistic characters are necessarily physical and sensual. In All The Little Bird-Hearts, Sunday’s first-person voice captures her embodied experience of the world. A third-party narrator would miss the enormous amount of physical restraint she must constantly exert:
I typically spend my time in public with my hands curled in fists against the silent requests made of them by all those things that I cannot touch.
In ‘Dear Neurotypical People’, Lloyd-Barlow explains why Sunday addresses the reader directly:
In writing the novel that forms part of my doctoral research on autism and narrative, it was imperative that my narrator addressed the onlooker; that audience who had held her within their [neurotypical] gaze for so long and who dominated the narrative on her condition. I frequently address an onlooker in my narrative, as if in naming them as seen, I am reversing the gaze in which autists have traditionally been imagined.
Sunday’s relationship with her daughter, Dolly, is an inversion of the better-known narrative of a neurotypical parent describing their autistic child’s inexplicable behaviours. It is normal teenage behaviour to challenge your parent and everything that they are, but Sunday is especially vulnerable to this challenge, because all of the world is aligned in this judgement of Sunday as getting everything wrong.
I knew that when I described Vita’s visit to Dolly, she would lose patience if I talked about the peculiar shine of this scar and its relation to my parents’ fish and her own childhood artwork; if I cited this pinkness as evidence of both our new neighbour’s frailty and her obvious need of us.
Sunday has two spaces where she can be more or less herself, and one of those is alone, at home. The other space is at work with her deaf colleague David. Her friendship with David always feels like a tea break as a reader, and I doubt that this specific alignment of the (unknowingly) autistic woman with a deaf man is in any way accidental. A lot of autistic people struggle with our place in the disability community, but it is still our space.
There are clear parallels between the ways Sunday and David are asked to mask their disabilities; with David, we are told:
He does not like to speak; he is self-conscious about his voice now that he can no longer monitor it. When he was younger and keen to sign in the new language he had learned, his parents sometimes made him sit on his hands during conversation to prevent him from signing.
Each autistic character brings us one character closer to a fuller picture of our human diversity. If that helps us better understand the odd lady on the bus, so overwhelmed by a tree she excitedly starts to explain trees to you, or the nervous young man who seems to speak in rap lyrics, there’s a bit of magic in that. As Sunday puts it:
The dancer’s fistfuls of secrets are released over me alone; it all comes down on my clothes, my skin, as light and silent as snow.
It is glitter and I am gold.