This is an extract from a longer essay by Sarah Whiteside who is an Edinburgh-based writer of fiction and personal essays. She was the winner of this year’s Anne Brown Essay Prize, which is run in conjunction with The Herald. It grew out of reading and research Sarah did after learning her son is autistic, which led to a slow-dawning realisation she is autistic too.

The essay explores flawed social and scientific attitudes to neurodivergencce, as well as the effects these can have on the daily lives of autistic people. It is inspired by the work of writers, researchers and activists coming from within the autistic community who, looking at autism from inside as well as outside, are able to ask new questions that produce new answers. These voices show autism is not so much a set of deficits as a different way of experiencing the world.

An intimate and personal account, ultimately this essay is about the power of words and ideas to effect change in daily life. It shows that a more accurate perception of autism can lead to greater self-understanding and acceptance, as well as improving autistic people’s experience of everything from education to healthcare.

Thin Slices

I’m at the kitchen counter again. Distant traffic passes. My son is at the table, eyes on a screen. A too-familiar soundtrack fills the room. It sometimes feels like this will never end. Him there, me here, the same tinny music on a loop.

He calls me over to show me what he’s built. It’s a fortress, designed to keep the zombies out. I stand beside him, my hand on the back of his chair. The screen is a blur of colour and light. I blink. It’s about the 700th one he’s made. My attention slides off towards the window, where the world waits in its blaze, trees melting into sky.

Reaching up, he takes me by the chin and turns my head back to the screen. But I can’t see what he sees.

1980. It’s playgrounds that scare me most. The wide-cold open space and figuring out how to cross it. Bells ring. Patterned concrete passes under running feet, lines blurring. I watch the other girls. I learn to look like them. Survival depends on staying in the middle, staying invisible. The best place to hide a pencil is in a pencil case.

1988. It’s double maths. I’m in the back row with the others, laughing when they laugh, swinging on two legs of a regulation plastic chair. Sweat pools at the backs of my knees and under my arms. The room is loud with heat, close with stifled talk. Itchy jumper. Itchy skirt. I live a life constricted.

I look out of the window, then at the clock. Twenty-seven minutes left. I’m waiting for the bell, even though it doesn’t mark the end, only a different room for more of the same. I’m counting the days and weeks, the years until it’s over: that’s the only sum I’m doing.

1997. I never speak in class. Silence marks me out. The other students share their thoughts with ease. The room swims with ideas, too fast to catch. It’s not as if I don’t have thoughts myself. I can almost taste them, in their music and their grit, but they won’t make it past my lips. If I try to talk, nonsense comes out. So I don’t.

2017. Three brain scientists from three different US universities – Noah Sasson, Ruth Grossman, Daniel Kennedy – publish a report laying out their work on the role of stigma in autistic experience. Up to this point much of the research in this area has, they say, focused on the communicative ability of autistic people themselves. Sasson et al point out that social interactions always involve more than one person. They turn their attention to nonautistic people. Asking participants to observe and rate ‘thin slices’ of videotaped interactions they aim to learn about all-important first impressions nonautistic people form about their autistic peers. Across all three studies they found that participants saw autistic people in the videos as more awkward and less likeable. This was the case even though they weren’t told they were autistic.

In 2023, a smaller study led by Danny Dunn, a young autistic graduate student in Sasson’s department at the University of Texas, asked both autistic and nonautistic participants similarly to rate similar ‘thin slice’ interactions and found that, while both groups saw autistic people as more awkward and less socially skilled, only the nonautistic participants ‘report lower interest in socially interacting with them.’ In other words, autistic people aren’t put off by awkwardness. Dunn called his study ‘awkward but so what’.

The child plays on the floor with a speech therapist. We are in an NHS paediatric unit, a doctor observing. I sit behind them with his dad, the two of us on matching plastic chairs designed for children. The perspective is all wrong. We look like giants. Small cars drive on small roads. Two heads bent over the game.

The child has a plan. The therapist also has a plan. She’s testing to see how flexible he can be in response to her ideas.

(Spoiler: not very.) ‘He got hurt,’ she says. ‘We need an ambulance.’ ‘No we don’t,’ he says.

I look up. The doctor’s watching me across the room. I look down and away. On the phone, before the assessment, she asked if there were any autistic people in the immediate family.

‘If you’d asked me a year ago, I would have said no,’ I said, gripping the receiver. ‘But the more I read, the more I understand I’m probably autistic myself.’ It was the first time I’d said it to anyone other than my partner. The moment it was out, it sounded made up. I’m not sure if she believed me.

I barely believe it myself.

Doctor and speech therapist go to a different room to confer.

My partner leans closer, lowering his voice. ‘That doctor’s autistic,’ he says.

The child picks up a plastic telephone. He presses the buttons. His dad joins him. We wait. We act like it’s a normal day. The doctor might come back any moment. She might say our son is autistic. She might say he isn’t. I’m 99.9% sure he is. But I still need them to tell me.

The child keeps coming over, bringing me things. The car. The telephone.

‘Look,’ he says.

But I can’t see what he sees.

The doctor comes back in. Words are coming out of her mouth, words that seem devoid of content. Then she says, ‘based on what we’ve seen today there’s enough evidence for a diagnosis.’ Child and father keep playing on the floor. I’m not sure that I heard her right. After that I can’t take much in, except the way she keeps using words like ‘we’ and ‘us’. The message slowly clarifies. Us autistic people. We are like this.

Autistic doctor.

Autistic mother.

Autistic child.

The doctor talks about her own son then. He’s autistic too. When he was the age their child is now, he used to like playing with cars too.

‘He used to like things that were predictable,’ she says, shrugging. ‘Don’t we all.’ She hands over a leaflet. That’s the end of it. We step back out onto the same street.

Many people still believe that autistic people lack empathy for others. This view has been propounded by prominent academics and has filtered down into the culture.

In 2012 autism researcher Damian Milton - who is autistic himself - counters this when he coins the term ‘double empathy’, suggesting that autistic and nonautistic people are like two cultures, speaking different languages. It’s not that autistic people lack empathy, he says, but that the two groups experience the world, express emotion, and interact so differently that it’s hard for members of either group to empathise across neurotype. This does not affect the two groups equally, he says. It’s autistic people who are expected to change to fit in with neurotypical culture—whether through ‘social skills’ classes in childhood, or an expectation to join in with gossip in the workplace. Milton suggests it might, therefore, be autistic people who gain the greater insight.

In the kitchen, sun comes round a corner and illuminates the table’s far end—toddler fork tines, dropped paint, the singe of a science experiment that got out of hand—scars of our history.

Our life in thin slices.

Sometimes it feels like this will never end: him at the table, my hand on the back of his chair.

It will.

He’s changing all the time, venturing out beyond the bounds of what I know.

There’s some new monster on the screen. I feel him flinch. One day he’ll be gone for good, out the door into a future I can’t imagine.

I wanted my son to be formally assessed for autism. I wanted to give him the chance both to understand himself and to be understood by those around him. We all want to be seen as we are, whether there’s a name for it or not. But it doesn’t always work that way; even with a diagnosis we can’t control how others see us.

With NHS waiting lists for adult assessment now stretching to many years, it will be a long time before I get a diagnosis myself. But I already have what I most need: the recognition that comes from hearing stories like my own and rereading my past in the light of them.

All this time and it turns out there’s nothing wrong with me.

There’s nothing wrong with my son either. Unless you count a highly sensitive bullshit detector, or the way he’s seriously allergic to coercion. He fights any curtailment of his liberty as if his life depends on it. He won’t - can’t - do anything but be himself.

I am so proud of him for that.

I drop a kiss on the top of his head; for once, he lets it pass. Together we turn back to the zombies.