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Writing Autism With Authenticity

Why I worked with a sensitivity reader

Sarah Hilary

I am writing this at the desk I bought myself when I moved house, two years ago. My first proper writing desk, a necessary extravagance after the frozen shoulder I’d acquired, hunching over tables or my own lap. New desk notwithstanding, the words themselves do not seem to come any more easily. There was an urgency to my former discomfort, perhaps, a nagging sense of needing to be done before my shoulder packed up entirely. I write beside an old window, often draughty. The room alternates between being too hot and too cold. When the radiator is on, the smell of burning dust tickles my throat. A bottle bank across the road rattles ferociously day and night. Conditions are rarely ideal for writing. And I have learned that I am sensitive to my surroundings in ways I did not know when I started out as a writer; it is only in the last twelve months that I have come to terms with a very late diagnosis of autism.

My intense obsessions, of which writing was always one, make a new kind of sense now. As does my sensitivity to heat and cold, to noise and light and the smell of burning dust. I would never say I suffer from autism; it is not like the frozen shoulder that afflicted me for so many months. I live with autism. I write with autism. Just lately – another first – I write about autism.

Even as a novice, I never trusted ‘Write what you know’. As a crime writer, I prefer ‘Write what scares you’. But for my eighth novel, Black Thorn, I chose to write an autistic protagonist. A painstaking choice on my part, quite unlike my usual method of creating characters which involves listening hard for half-imagined whispers, voices in my head; I like my characters to creep up on me, settling at my side; I take care not to look directly at them, in case they slide away. The periphery of my vision has been my preferred hunting ground, for characters and ideas.

For Black Thorn, by contrast, I decided at the outset to create an autistic protagonist, Agnes Gale. With the support of my editor, I decided to state clearly, upfront, that she is autistic — knowing there are many autistic readers who like me glimpse themselves in fictional characters and wait eagerly for confirmation from the author, only to find it never comes. The glimpse, it seems, should be sufficient. As if a stated diagnosis might somehow diminish the connection between character and reader. Or perhaps because of the stigma that surrounds the diagnosis.

I admit to wavering on this point myself. Did I need to use the word autism? Wasn’t it enough that Agnes thought and felt and acted as an autistic person might? Was it necessary to spell it out?

For those readers who seek representation on the page, it felt like cheating (or at best, teasing) to hint at neurodivergence while withholding the word that best describes the condition. As for the stigma, I failed to see how shying away from the word ‘autism’ would help to diminish that. I had written autistic characters before, without ever naming their condition. Noah Jake, the detective sidekick to my D.I. Marnie Rome, was almost certainly autistic. I never used that word, however. I never said, ‘Noah is autistic’ and that niggles at me still. This time was going to be different.

In Black Thorn, Agnes Gale is twenty-nine. Her late diagnosis of autism came when she was an adolescent. Mine didn’t come until I was in my fifties and even then by accident, as a result of my son’s own late diagnosis. (How had I missed so many clues in his infancy, those odd behaviours? Because to me, they were not odd at all.) Agnes is as unlike me as any of my characters. I have always preferred to write wide of myself. But it mattered more than usual that I did justice to her on the page and in the story. I felt responsible for her, in a way which was distinctly different to my other characters. Not protective, as such, but honour-bound to tell the truth about how the complexities of a condition like autism affect everything, from the way you wake up and the way you work, to the way those around you react.

Autism is a spectrum. It is important to say that Agnes is not intended to represent anyone other than herself. The worst trap I could fall into, I felt, would be producing a boilerplate character who ticks the vague boxes in a neurotypical person’s head (the maths genius, the Rain Man) while doing nothing to convey the true nature of the condition. Nor did I want to simply replicate my own experience of autism, which would in any case fail to provide Agnes with the propulsive personality needed to carry a crime novel. Above all else, I needed to be certain that another autistic person, picking up my book, would connect to Agnes. It was crucial that all readers arrived at an understanding of her complexity, feeling for her plight, sharing some of her fears and cheering her on in adversity. First and foremost, she had to feel real. As every character in a novel must.

By the time I had a finished first draft of Black Thorn, I knew I wanted a sensitivity reader: someone whose task it would be to scrutinise my writing for the care taken to represent autism in a respectful and authentic way. Why, you might ask? I am autistic. This is my lived experience. True. But I am only one person, and it is a spectrum, and Agnes had to ring true. I already had my ideal sensitivity reader in mind: someone like me who was diagnosed later in life and whose unsentimental, searingly honest writing about herself and her autism had always impressed me. My editor and her team supported the plan and luckily, my ideal reader said ‘Yes’. Her report, when it came back, reassured me that I had handled Agnes’s vulnerability with the appropriate care and compassion.

The idea of sensitivity readers may have attracted negative press attention. Like ‘trigger warnings’, the very words ‘sensitivity reader’ can provoke opinion pieces that appear to mock the publishing industry’s attempts at increased representation. Authors are being censored, the detractors claim, and readers are being patronised. Personally, I did not feel that using a sensitivity reader in any way limited my creative freedom, or censored my imagination. It was not about mollycoddling readers or pandering to the ‘woke’ faction responsible for trying to introduce greater diversity in literature. It was about authenticity — a goal towards which every serious writer strives. If our characters do not feel authentic, if they do not function as real human beings, then we have failed in our first duty as writers. For this reason, I feel ‘authenticity reader’ or even ‘inclusivity reader’ would be a better term.

After all, what is ‘sensitivity’ if not the recognition of the extent to which we are all affected by emotional or aesthetic stimuli? As an autistic writer, I may find myself feeling more sensitive to certain stimuli than another person but isn’t this how we connect to our readers — by provoking emotional, even visceral, responses to the stories we create?

Sensitivity readers, like great editors and copy editors, should be welcomed as our helpmates in the quest to draw our readers into the worlds we are building, testing their foundations and walls for soundness, listening for echoes, letting in light. So, I write in praise of sensitivity readers, because I recognise and cherish the special power they can bring to our work on the journey it takes before each book finds its way into the hands of readers.

Sarah Hilary’s debut, Someone Else’s Skin, won the Theakston Old Peculier Crime Novel of the Year and was a World Book Night selection. The Observer‘s Book of the Month, it was both a Silver Falchion and a Macavity Award finalist in the US. Black Thorn will be published in 2023.

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