Thin Slices (Part Two)

the second part of an award-winning essay on neurodivergent experiences of education and healthcare

This is the second and final part of an essay I wrote to explore my, and my son’s, experiences with education and healthcare systems in the UK, exploring a growing understanding that these experiences have been shaped by our neurodivergence and by misconceptions of neurodivergent people still common in wider society. It won the 2024 Anne Brown Essay Prize. If you want to read the first part first, you can do so here.

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

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At the door of one of the city’s libraries, I take out my earphones and absorb the hush. Waiting in the queue, watching the librarian behind the desk, I become certain she’s autistic. I’m not sure how I know this. Perhaps it’s the way she makes eye contact without quite making it, or the way her voice rings out in the quiet, vaulted room. She appears marooned there on her dark wood island, surrounded by a sea of books, at the mercy of whatever blows in through the door. There’s something brave about her, brave and vulnerable. I think she must be tired by the end of each day.

At the front of the queue, I hand over a pile of books. Some of them are children’s books, I say, others for the music library. I tell her I hope it’s all right to return them all together. I say this even though I know it is. That’s how I know I’m trying to make a connection. The librarian gives a similarly long answer. I think she might want to make a connection too. Yes, it’s fine to return all the books here. She just needs to put the ones for this library in this box and the rest of them in that.

She’s checking the books as she talks, looking inside the front covers to see which library each book must be returned to. She opens one of the children’s books.

‘Ah, Portobello,’ she says. ‘The last time I was there my child bit someone, so we haven’t been back.’

We laugh.

‘Happens to the best of us,’ I say.

It occurs to me the meaning of this exchange will be invisible from outside. It will look, from out there, like two women making small talk as they complete a transaction. From in here, it seems to me we’re having a neurodivergent conversation about neurodivergence. Some of it is in the words we say—when she told me her child bit someone, I felt like she was telling me her child is autistic—some of it is hard to explain, momentary judgements made from thin slice interactions.

Collecting my reserved books from the shelves, I remember nursery rhyme sessions at Portobello library when my own child was small. All the other babies sat on their mothers’ laps while he crawled off towards the shelves, pulling book after book out onto the floor. I remember going along behind him putting them back, still miming bus wheels and winding bobbins at the back of his head.

He still doesn’t like groups and joining in. Honestly, neither do I. It doesn’t matter. Now we know about autism, we just don’t go to stuff like that.

I glance back at the librarian, still standing at the counter, then down along the length of my own foreshortened body. I’m wearing jeans, trainers, and a stripy t-shirt. I can see just the tips of my hair, which is cut into a nondescript sort of bob. There is nothing particular to mark me out. But the recognition between us was mutual. I saw myself being seen.

In the library’s autism section, there’s a book by an eminent academic, a specialist in the field. I saw it last time I was in. I know it argues that autistic people lack empathy. Silently, I make my case for the defence. I tie myself in knots, trying to get my story straight, until I stop believing it myself. Anything I lay down here in black-and-white, I know it’s not quite true. And then I want to take it back. Meanwhile, he continues on, unaware of my existence.

I take my reservations to the counter: a collection of Paul Auster’s writings and a book about neurodivergence and education. The same librarian is still there behind the desk. She stamps the books. When she hands them back to me, she puts the neurodivergent book on top of the other one.

‘Looks interesting,’ she says.

‘Yeah,’ I say. ‘She’s good.’

I want to tell the librarian to read it. I want to say that it’s written for the parents of children who bite people in libraries. Instead I mumble a goodbye. I look in the general direction of the librarian’s face. The librarian looks in the general direction of my face.

In his poem, ‘The Scottish Constitution’, Robert Crawford writes of those who are ‘shy, tongue-tied, then eloquent, / Catching your eye and holding it forever’. The librarian and I don’t catch each other’s eyes of course because – yuck! – why would you? And yet the meaning holds. As I step back out into the bustle of a Saturday afternoon—awkward but so what—I’m still smiling.

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The GP is younger than me—in his middle thirties perhaps. Bright pictures, probably drawn by his children, are pinned up on the board behind his head. He takes time to check we haven’t met before, to say he’s glad to meet me. Knowing how many patients he must see each day, I appreciate that. 

After he’s checked my blood pressure, made a referral, and arranged a follow-up appointment, we get talking about autism. I’m trying to write an essay about it. He has an interest in it: as a medical student, he had a part-time job working with an autistic girl who wasn’t able to attend school. He became so interested in autism, in fact, that he read several books by a famous academic in the field. He says the name. It’s the same person who wrote the book I saw in the library the other day.

I can’t help myself. People in the autistic community take issue with the idea that autistic people don’t have empathy, I say. I tell him about Damian Milton and double empathy. I tell him that everybody—autistic or not—has difficulty with communicating across neurotype.

He glances at the door. Doctor and patient. He holds all the power of course. I’ve used up all my time and more.

‘I have to admit, I did get the impression from those books that autistic people lacked empathy,’ he says. ‘I’ve met some autistic adults and that wouldn’t be true of them, I’m pretty sure.’

In other words, he had accepted the idea that autistic people lacked empathy, despite the evidence of his own eyes, because he read it in a book. I’m sure he’s not alone in this. If I hadn’t been researching autistic experience for the last couple of years as if my life and the life of my child depended on it—which in a way it did—I probably would have accepted it too.

‘The trouble is,’ I say, ‘it sort of filters down into the culture, an idea like that. It makes things harder for autistic people. All this new autistic-led research, it takes time for it to get known. It takes time for people’s views to change. Meanwhile the education system is still based on the old ideas. And the health service.’

He laughs. I hope I haven’t gone too far.

‘I’m glad to stand corrected,’ he says.

As he says this, he does stand. He goes to the door and opens it. I read his intention perfectly. We say our goodbyes. I leave.

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I hear an interview with Jodie Wilson, an autistic veterinarian and researcher. She describes a study she recently conducted at La Trobe University in Australia that aims to explore the experiences of autistic people accessing mental health services. Based on the overarching theme of ‘we don’t know what we don’t know’, it shows, in line with Milton’s double empathy theory, that poor outcomes are often based on mutual misunderstandings between autistic patients and the nonautistic professionals aiming to help them.

I prick up my ears.

It’s easy to get angry on behalf of autistic people who seem to have been mistreated, she says, but failures are traumatic for all involved: she never met a healthcare professional who wanted to fail at their job. Not knowing isn’t a problem, she says. It’s when you think your knowledge is complete that things go wrong.

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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 him 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.

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