Finding My Authentic Voice as a Late-Diagnosed Autistic Writer

I had always used writing to try and make sense of myself, without realizing just how much of this was a way of processing a divergent experience of the world.

In the first short story I ever attempted to write (still unpublished), an adolescent girl wakes up to an empty house, her family apparently disappeared. Rather than looking for an explanation for the sudden state of abandonment or trying to resolve the situation, the girl embraces the freedom granted by solitude before giving in to mental and physical deterioration, which progresses in time with the rotting house. Teachers, readers, and editors, in their kinder rejections, have told me it’s “interesting” but that they are at a loss to know what is actually going on in the narrative. When pressed for an explanation, I have said it can be a metaphor for anything from puberty, grief, isolation, or depression to the aftermath of an actual apocalypse, whether zombie or nuclear. It could be about all of these things or none—I’ve never really been sure. The story came first and the search for some kind of logic later.

The product of an unsettling dream, the story’s atmosphere echoes two of my favorite short fictions, Kafka’s “The Metamorphosis” and Charlotte Perkins Gilman’s “The Yellow Wallpaper.” Did my story describe a real house of horrors, or was it all in the protagonist’s mind? Was she actually dead? A ghost? Did it matter? Though I knew I was processing something lurking in the cluttered halls of my subconscious, I could not pinpoint what.

Since the beginning of the pandemic, I’ve had the sense that I’ve been edging toward some sort of larger understanding of myself and my place in the world through my work. I assumed I would find the key, which felt like it was dangling just beyond my grasp, while completing my PhD. The insights into healing I was encountering through interviews and theory would surely guide me to the revelation I was chasing. I did not, however, expect to find the answer within my own mind and body.

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In December 2021, at thirty-seven, I was diagnosed with autism. A neurotype encompassing a plethora of divergent communication and sensory processes, autism impacts people in a variety of ways, to different degrees at different times, and under diverse circumstances. Autism comes with challenges from living in a neurotypical world that has not been designed for us, but it also comes with strengths; no two autistic people are the same. In my case, the diagnosis has provided an explanation for everything from an aversion to the texture of mushrooms and sensitivity to loud noises to my strong—sometimes rigid—sense of right and wrong. It has helped me understand why, since I was a child, I have felt so out of sync with the world around me, so clueless as to many social norms others take for granted, and the resulting sense of isolation, loneliness, and not belonging.

From one day to the next, this short story, and most of my other writing, made far more sense than it ever had before. The protagonist of the story stims (which refers to comforting repetitive movements) in multiple ways and demonstrates sensory aversions and preferences both similar to and also distinct from my own. She seeks out small dark spaces to feel safe. She is plagued by unsettling memories from her previous life: a litany of failures at being “a good girl” and fitting into socially accepted behaviors. She feels alone and isolated before the disappearance of her family, so perhaps the abandonment makes little difference to her inner emotional world—or it merely confirms her worst suspicions about herself as unwanted and unloved. The short story is a sensory immersion, because my world is made up of too-sharp edges, too-loud noises, too-strong smells and tastes, too-scratchy textures, and too many people demanding too many things, all of which can make me recoil and want to retreat to my own cocoon.

Though I knew I was processing something lurking in the cluttered halls of my subconscious, I could not pinpoint what.

I had always used writing to try and make sense of myself, without realizing just how much of this was a way of processing a divergent experience of the world. My story is not, in fact, about a zombie apocalypse. It is a metaphor for living with undiagnosed autism.

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Late autistic diagnosis in women, trans, and nonbinary people is becoming increasingly common. In a world where Dustin Hoffman’s Rain Man remains the prevailing stereotype for autism, very few people understand, or even accept, the diverse ways autism can present. Many autistic people do not fit into the stereotypical images of young white boys obsessed with math and trains and so are missed entirely. The more intersecting your identities are, the higher your chances of remaining misdiagnosed or undiagnosed.

For me, it was the stories of other autistic women’s lives, particularly Hannah Gadsby’s show Douglas, which echoed so closely to my own experiences, that led me to consider I too might be autistic. But even then I was so doubtful of my own perception I did nothing to seek a diagnosis for almost two years after the first suspicions surfaced. I could make eye contact, had friends, finished university, traveled all over the world, and lived alone. I downplayed the fact that my ability to sustain eye contact is patchy at best; my friendships and relationships come to frequent painful endings; my university career was completed in fits and starts; I have never done well in formal employment, even in my chosen field; and traveling has often been an attempt to escape myself and my feelings of not belonging. I rarely admitted these difficulties and became an expert at denying this reality from myself and the world.

Even after taking multiple online screenings, filling out an extensive evaluation form, and three separate interviews with a clinical psychologist, I was not at all convinced I met the criteria for autism. I remained in doubt until the moment the psychologist confirmed that I unequivocally met all but one of the diagnostic criteria.

I spent the holidays reading everything written by autistic women I could get my hands on. Happily, more and more autistic women and trans and nonbinary people are finding ways to share their own stories. In the last year alone, Sara Gibbs published Drama Queen, Joanne Limburg Letters to My Weird Sisters, Eric Garcia We’re Not Broken, and Hannah Gadsby Ten Steps to Nanette. I tracked down podcasts produced by autistic women and rewatched Douglas. In every chapter, in every episode, I found something that shone a light on experiences or interactions I had never quite understood. It was a relief to know there was finally an explanation for all the ways I had believed I was simply wrong and broken, and a delight to discover a wider community of people who shared similar experiences. Their insights have been far more valuable than the pathologizing and stigmatizing articles and books, which tend to be produced by neurotypical clinical researchers.

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Alongside all this research, I couldn’t stop writing. I wanted to get everything I was learning and feeling down on paper, to capture the wonder of this new way of seeing myself. But perhaps the most interesting aspect of this process was in returning to things I had already been working on for quite a while. In particular, I had written two essays on grief and belonging, essays I had been playing around with for more than a year without really knowing how to tie them together. It turns out my diagnosis was the missing link. In the space between Christmas and the New Year, I finished both and sent them out for submission.

In these first months after my diagnosis, I continued to work on my novel, which I had begun editing in earnest in August 2021 with the idea of having a polished draft ready for submissions by the beginning of 2022. As I pursued my diagnosis, the lines between myself and the protagonist began to blur. A queer migrant, Peggy had always been a proxy character of sorts. But I had not lived through the 1920s in New York City, nor had I been forced into a heterosexual marriage as a “solution” for my queerness, so there were obvious limits to our commonalities. And yet, in the evaluations I was filling out, I found myself thinking, I don’t do that, but Peggy certainly does. I often felt I was responding both for myself and my fictional character.

It was a relief to know there was finally an explanation for all the ways I had believed I was simply wrong and broken.

Autism as a diagnosis did not exist until the 1940s. The words that might have been used to describe a woman like Peggy in the 1920s could have ranged from obtuse, standoffish, odd, and, more cruelly, slow or idiotic. She is verbal and able to work full-time and so would likely have passed under the radar, as I did. Yet she is also a shy recluse, with minimal social skills and poor comprehension of how the world around her works.

Armed with this new knowledge about myself and autism, editing my novel has taken on a whole new dimension. It became increasingly obvious that Peggy is without a doubt autistic. In fact, her autism is perhaps far more obvious than mine might be to an outside observer. As I revise, I am conscious to avoid falling into the trap of reaffirming negative stereotypes or turning Peggy into an autistic caricature. Rather, I am making little tweaks or fine-tuning certain scenes, as I have much greater clarity about her emotional inner world and understand—consciously and not just intuitively—where her behavior is coming from and why she is reacting a certain way.

In editing Peggy, I am learning about myself. She is the person I might have been if I had not succeeded in masking my own difficulties and presented a socially acceptable face to the outside world for so long. It has been fascinating to realize just how much my unconscious experience has permeated my writing. My oft-rejected short story no doubt needs another rewrite now that it is clear to me what is actually going on.

During my research, I discovered that I am not the first writer this has happened to. Holly Smale, the author of the YA series Geek Girl, discovered ten years after publication that she is autistic. The National Autistic Society in the UK had written to her asking if the protagonist was autistic, and Smale, undiagnosed and unsuspecting at the time, responded with a resounding no, though now she embraces the autistic identity of her main character, Harriet, as well as her own.

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There can be no denying a certain stigma still clings to autism. The condition is widely misunderstood as a mental health problem or behavioral abnormality rather than a different neurotype. It has been a strange feeling to realize that, while the diagnosis has been overwhelmingly positive for me, much of the wider world does not see it as such. I am more sure of my voice, my point of view, and what I might have to share through my writing than ever before. And yet, when so-called experts assert that autistic people have deficits of imagination and generally lack empathy, I worry that being “Aut” will close, rather than open, certain doors.

I used to push myself to the limits of my creative and physical energy, working on multiple projects as well as my PhD all at the same time, never convinced I was doing enough and always berating myself for being lazy and unproductive. Writers know all too well that the pressure to publish, to get your work out there, and make a name for yourself, often while working full-time jobs in other fields, can be incredibly demanding and demoralizing. The diagnosis has forced me to recognize the limits of my mental, physical, and emotional capacities and to take better care of myself if I want to avoid another burnout. My self-talk over the last few months has been along the lines of I don’t have to make every deadline, respond to every call for pitches, or even get my novel finished this year. Some days it works; other days I panic that my active submissions have fallen below ten. Self-compassion is a work in progress.

But now I have in my hands another reason to push forward: In a world where medical discourse focuses overwhelmingly on deficits, and where funding research into curing and preventing autism is still underway, I am encouraged by the very recent surge of publications by autistic writers. The importance of speaking for and about ourselves cannot be underestimated.