The Autists: women on the spectrum

By Clara Törnvall

An incisive and deeply candid account that explores autistic women in culture, myth, and society through the prism of the author’s own diagnosis.

Until the 1980s, autism was regarded as a condition found mostly in boys. Even in our time, autistic girls and women have largely remained undiagnosed. When portrayed in popular culture, women on the spectrum often appear simply as copies of their male counterparts — talented and socially awkward.

Yet autistic women exist, and always have. They are varied in their interests and in their experiences. Autism may be relatively new as a term and a diagnosis, but not as a way of being and functioning in the world. It has always been part of the human condition. So who are these women, and what does it mean to see the world through their eyes?

In The Autists, Clara Törnvall reclaims the language to describe autism and explores the autistic experience in arts and culture throughout history. From popular culture, films, and photography to literature, opera, and ballet, she dares to ask what it might mean to re-read these works through an autistic lens — what we might discover if we allow perspectives beyond the neurotypical to take centre stage.

• Language: English
• Publisher: Scribe Publications
• Release date: May 30, 2023
• ISBN: 9781761385124

Clara Törnvall

Clara Törnvall has been a journalist and producer since the early 2000s. She’s produced programs for Swedish radio and TV, as well as written articles/chronicles for various media outlets. Her first book, The Autists: women on the spectrum, was written after her diagnosis with autism at the age of 42 and has been published in 12 languages.

Book preview

THE AUTISTS

CLARA TÖRNVALL has been a journalist and producer since the early 2000s. She’s produced programs for Swedish radio and TV, and written for various media outlets. The Autists: women on the spectrum is her first book, and was written after her diagnosis with autism at the age of 42.

ALICE E. OLSSON is a literary translator, writer, and editor working across Swedish and English. She has served as the Cultural Affairs Adviser at the Embassy of Sweden in London and is the recipient of a fellowship as well as multiple grants from the Swedish Arts Council. In 2020, she was shortlisted for the Peirene Stevns Translation Prize. She is currently pursuing a PhD in comparative literature at University College London, specialising in literature and human rights.

Scribe Publications

18–20 Edward St, Brunswick, Victoria 3056, Australia

2 John St, Clerkenwell, London, WC1N 2ES, United Kingdom

3754 Pleasant Ave, Suite 100, Minneapolis, Minnesota 55409, USA

First published in Swedish as Autisterna: om kvinnor på spektrat by Natur & Kultur 2021

Published by arrangement with Nordin Agency AB, Sweden

First published in English by Scribe 2023

Copyright © Clara Törnvall 2021

English translation © Alice E. Olsson 2023

The moral rights of the author and translator have been asserted.

All rights reserved. Without limiting the rights under copyright reserved above, no part of this publication may be reproduced, stored in or introduced into a retrieval system, or transmitted, in any form or by any means (electronic, mechanical, photocopying, recording or otherwise) without the prior written permission of the publishers of this book.

Scribe acknowledges Australia’s First Nations peoples as the traditional owners and custodians of this country, and we pay our respects to their elders, past and present.

978 1 922585 89 9 (Australian edition)

978 1 914484 81 0 (UK edition)

978 1 957363 53 0 (US edition)

978 1 761385 12 4 (ebook)

Catalogue records for this book are available from the National Library of Australia and the British Library.

scribepublications.com.au

scribepublications.co.uk

scribepublications.com

To Harry and Lydia

CONTENTS

Introduction

The Autists

The Invisibles

Holy Fools and Refrigerator Mothers

Lost in Thought

An Attack on All Senses

The Automatons

The Unbearable Weight of Being

Too Much Faith in Words

The Autistic Brain

Peer Pressure

I Lock My Door upon Myself

Insula

School and Work

The Patroness of Impossible Causes and Hopeless Circumstances

Epilogue

Acknowledgements

Bibliography

INTRODUCTION

There ought, I thought, to be a ritual for being born twice — patched, retreaded, and approved for the road.

SYLVIA PLATH, THE BELL JAR

‘Let’s go to page seven,’ says the psychologist.

I browse among the pages on my lap. There it is, at the bottom: ‘Autism, without accompanying intellectual impairment and without accompanying language impairment, level 1.’

‘There’s nothing else interfering,’ the psychologist says kindly. ‘No suspicions about other diagnoses.’

I read that I fulfil all seven diagnostic criteria for what used to be known as Asperger’s syndrome. By a long shot, it seems. On one of the rating scales where a score of more than 77 points supports a diagnosis, I come in at 154. I feel like I’ve done well by being such a clear-cut case.

The assessment, which we are going through together, also includes a summary of my psychiatric history. It’s aimed at others within the psychiatric services whom I may come into contact with in the future, the psychologist explains.

That won’t happen, I think to myself. I will never again be in contact with the psychiatric services. This is it.

My past unfolds. It’s like watching a film with an unexpected twist at the end. A revelation that overturns everything I thought I knew about the main characters and the plot. The hints foreshadowing the solution to the mystery suddenly appear in stark focus. They line up, one after another throughout the years. The signs have been there all along.

I have always known that I’m autistic. And yet I haven’t had a clue.

Three months earlier, I walk through downtown Hagsätra, a suburb south of Stockholm. I step in under a roof, passing the supermarket and the pastry shop, my mind churning with the same three words: This is it. It happens sometimes — a sentence gets stuck in my head, a short loop repeating itself like an incantation.

The neuropsychiatric clinic is hard to find, despite the GPS in my phone. I spin a lap in the wrong direction through the downtown area and come to a stop, disoriented, in front of a statue titled Girl with a Ball. The girl is leaning forward, frozen, with her mouth shaped into an O. The fountain in front of her has been drained of water; the stream she blows is invisible.

I’m 42 years old and so tired of myself that I have just about had it. As far back as I can remember, I have suffered from anxiety: a sinkhole in the pit of my stomach that I’m so used to, it has become my ground state. The anxiety has nothing to do with my thoughts; it lives in me like an organism of its own. I’m not compulsive or hypochondriacal, not plagued by worry. I don’t meditate on future disaster scenarios. But as I move through the world, I’m always uncertain. Every step I take is tentative, as though I’m walking on thin ice.

I’m constantly on edge and weighed down by a sorrow I don’t understand. I sleep with my fists clenched at night. For periods, I have violent nightmares. In a recurring one, I have died as a little girl. Darkness has settled over the Humlegården park in Stockholm and I’m crouched down, shovelling black earth out of my grave with my bare hands. It’s night-time and I’m alone in the park. The hole in the ground grows. Down in the dirt, I glimpse a green nightgown with white flowers, a lock of blonde hair, the handlebar of my doll’s pram from BRIO. I’m alive and grown up, yet the girl’s body lies buried in the dirt. What’s happened to me? Why did I die?

For as long as I can remember, I have felt different.

I count backwards. Since the age of 18, I have seen six different therapists for individual therapy and three couples or family therapists, been on two different kinds of antidepressants and various anxiety meds, read piles of books and articles about mental illness, and spent a weekend at the psych ward. Nothing has helped. None of what is said or written fits. It’s never describing me.

Slowly, a thought has matured in me: It can’t be possible that I’m supposed to feel this way. Therapy and medications are supposed to work, aren’t they? People go to therapy for a limited period, not their whole lives. I’m not young anymore. I have to finish this.

I try another route to find the clinic, giving way to a large man in a denim vest who is yelling out for change, hurrying my steps without knowing if I’m walking in the right direction. The downtown area seems fluid, as though the streets have shifted every time I turn my eyes in a new direction.

Over the years, I have tried to identify with the most common mental struggles affecting women. I have wondered whether I’m guilt- or shame-driven, self-effacingly preoccupied with pleasing others, a high-achieving good girl racing towards burnout, a perfectionist with an eating disorder who hates her body. Or simply chronically depressed?

No, it’s not right. None of it. On the contrary — most of the time I don’t care what others think of me. I achieve, but only in areas that interest me. Anything that bores me, I ignore. When it comes to my body, I’m indifferent. In conversations with friends, I sometimes try to pretend to care about sugar and exercise — things that women are expected to be interested in — but in truth I eat anything I want. I have never perceived my self-worth to be tied to my body.

And yet this relentless anxiety and debilitating fatigue. Do I have trouble sleeping? Not at all; I’m out like a light every evening.

There has to be a reason.

Finally, I find the entrance to the neuropsychiatric clinic for adults.

The psychologist I’m seeing has a name that I interpret as feminine. I imagine a wise older woman, close to retirement, with reading glasses on a cord around her neck. The kind who stands firmly rooted in her long experience — who has seen it all and doesn’t fear anything.

The people in the waiting room look normal. White earphones, sneakers. A man in a light-blue sports jacket is absorbed in his phone. On the tables are mandala books for colouring. I open one. ‘It’s not a chemical imbalance, it’s an imbalance of power,’ a previous visitor has scribbled on the title page. ‘Neither — it’s a dysfunction,’ a different handwriting replies. ‘But it’s still a part of you, so be proud!’ a third one points out.

A woman steps up to the front desk to pay for her visit.

‘Receipt,’ says the guy behind the glass.

The woman looks at him in confusion.

‘Do you mean if I need it?’ she asks.

A tiny bubble of joy rises inside me. She and I are related. How are you supposed to know what someone means when all he says is ‘receipt’? It sounds like a statement, not a question. I have come to the right place. These are my people.

‘Clara?’

My psychologist walks up, holding out his hand. He is a small man in hipster clothing. He is younger than me and quite good-looking. Damn it. Behind his back in the corridor on the way to the consultation room, I feel like a mental case. A particularly difficult one that should be locked up right away.

He explains matter-of-factly how the assessment will proceed. He will interview me and speak to my close family, we will do tests, and I will fill out questionnaires. I say that I’m worried about not being believed. The friends with whom I have shared my suspicions about autism have all replied: ‘Not you!’

‘I know how to behave. I’m a grown woman and I’ve practised all my life. I’m really good at keeping up a front,’ I warn.

He chuckles.

‘There’s no point in putting up a front here.’

Afterwards, I google him. He runs a podcast about geek culture.

I have been waiting for over a year to start the assessment, and it wasn’t until I called up the Patient Advisory Committee that it became my turn. I want to be evaluated within the public healthcare system, not through a private clinic. The risk that I will wonder afterwards if I have bought my diagnosis must be eliminated. This shall be done right.

I want to speak truthfully and honestly, so ahead of the next meeting with the psychologist I draw up a list of my difficulties lest I forget something:

I’m the kind of person who puts too much faith in words.

I don’t pick up on subtext.

I don’t realise that people might be lying.

When I speak, my words fall to the floor and lie there. I feel an enormous sense of powerlessness at not being able to make myself understood.

I’m often angry with others because they don’t understand what I mean.

I keep in touch with more people than I have the energy for.

I like to talk about the same thing for a long time, and don’t like conversations that jump too quickly between topics.

I struggle with eye contact.

I have a hard time working with others, because no one thinks like me. I become impatient with other people’s slowness.

I don’t like repeating myself. I have already said what I wanted to say once — that should be enough.

In social situations, I mimic and put on an act. I’m scared of people.

I can’t handle abruptly switching between roles, such as my parenting and professional roles, being torn between worlds.

I can’t find a balance between the children’s needs and my own. I run myself into the ground.

I can’t handle being interrupted — for example, speaking on the phone with someone who wants something other than what I’m thinking in the moment.

I don’t like changing plans.

I get tired quickly and need a lot of breaks.

I have a few strong interests. But I’m uninterested in much.

I constantly feel like I’m not being left alone.

I’m sensitive to sound. I wear sunglasses and earphones at all times.

I’m intelligent in certain clearly defined areas, such as linguistically and theoretically, yet completely incapable in others. I can’t do simple maths or follow basic instructions concerning anything practical.

I struggle with routines, such as showering and brushing my teeth. I do it, but there is a resistance. Anything practical or physical requires a great deal of effort.

I have a poor sense of direction, to the extreme. I get lost in the corridors at work, where I walk every day.

I’m all but face blind, unable to recognise people. But I remember everyone’s name!

I have a hard time with chitchat, don’t know what to say. I want to speak, but I’m tongue-tied.

The gap between outer reality and my inner world is too wide. The two don’t connect.

Reading through the list, I want to laugh. Who is this madwoman?

THE AUTISTS

[It’s] like being in a transparent box. No one can hear you. They can see you, but they can’t interact with you. You can bang on the wall, but you can’t get out of it. So, it’s very lonely being in the box your entire life.

OLIVIA, PARTICIPANT ON THE REALITY SHOW

LOVE ON THE SPECTRUM

A brain is born. Three weeks after conception, when the embryo is smaller than a millimetre, a groove forms in the future fetus. The groove is covered over and becomes a tube, one end of which expands into a bubble. This little bubble is the beginning of the brain. When a child with autism is born, somewhere along the way the brain has developed differently.

The cause of autism is biological and there is a strong hereditary component. It’s a tricky field of research, involving many different genes. Children can inherit a genetic vulnerability to developing autism. But for autism to arise requires a certain amount of genetic differences, so the specific combination of genes is crucial. This also means that not all siblings in the same family necessarily become autistic.

Sometimes such genetic vulnerability doesn’t exist in the parents but arises spontaneously in their sex cells or during the fetal stage — though this is less common. Such genetic mutations can, for example, be caused by the immune system overreacting to a viral infection, by stress or trauma in the mother during pregnancy, by brain injury at birth, by the parents’ age, or by the child being born extremely prematurely. What’s certain is that no one becomes autistic from vaccinations or the environment they grow up in.

A different brain leads to a different way of being and functioning. Autism is not a disease. It can’t be trained away, and there is no medication.

Today, so-called ‘high-functioning autists’ are diagnosed with autism spectrum disorder without intellectual impairment. What used to be known as Asperger’s syndrome has, since 2013, been incorporated into the term ‘autism spectrum disorder’ in the psychiatric diagnostic manual DSM-5. The designation ‘Asperger’s’ is on its way out, but is still used occasionally. The term ‘spectrum disorder’ reveals that many ways of being and functioning in the world fall under the same umbrella. The autism spectrum is wide and includes people who experience great difficulties and may, for example, be non-speaking, as well as individuals with demanding full-time jobs. The degree of autism is differentiated into three levels indicating how much support the individual needs, where 1 is the lowest.

Autism is relatively new as a term and a diagnosis, but not as an experience. As a condition, it has always been present in humanity. But throughout history, the language to describe autistic people has varied. They have sometimes been referred to as ‘withdrawn’, ‘eccentric’, or ‘odd’.

Autism cuts across categories such as age, class, gender, and ethnicity. It exists all over the world and expresses itself in similar ways across different cultures.

Autism makes itself known early, even in the first or second year of life, and children with autism grow up to become autistic adults. Despite this, almost all public discussion of neuropsychiatric diagnoses revolves around children and young people. It’s as though we think people grow out of it. They don’t.

Another, even stronger misconception about autism is that it’s a distinctly male condition. The image of the typical autist as a man has long been prevalent in both research and culture. High-functioning autism, or Asperger’s syndrome, was seen as a diagnosis for boys. For a long time, girls of average or above-average intelligence weren’t even thought to be able to have autism. Such girls were said not to exist.

There are certain widely established conceptions around men with autism, yet the autistic woman remains unknown in our time.

In fiction — films, TV shows, and books —