Stories

Autistic togetherness during lockdown

Writer Kate Fox, who was diagnosed with autism in her 40s, set out to challenge the stereotype about miserable, isolated autistic people in an article. But COVID-19 intervened. As greater isolation has been forced on everyone, Kate explores the strength and connections that are helping autistic people during this crisis.

Words by Kate Fox and photography by Colin Potsig

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Photographic montage artwork showing the head and shoulders of a woman with bold shoulder length hair and a turquoise sweater, looking straight to camera. She is sat in front of a blue and white patterned tiled chimney breast with shelves on either side supporting a selection of white ceramic figures depicting dogs and people. Digitally montaged over the top of the portrait to the left and right are small doll like figurines, colourful yellow and orange flowers and blue and white Dutch Delft style plates. Above the woman's head is typed "Controlling the routines is easier in these limitations" in yellow and purple fonts. Below her is typed, "I've stopped giving a fuck".
Jane Burn. © Colin Potsig for Wellcome Collection.

I’m one of an increasing number of late-diagnosed autistic adults. I was 42 when I sought a diagnosis from the University of Kent, three years ago. I went private because NHS waiting lists are long and there’s still a lack of expertise on how autistic women present. We’re more likely to mask our autism, which basically means women are more practised at appearing ‘normal’. 

I’ve learned the social rules that come more easily to neurotypicals (people not on the autism spectrum) by studying them intensely. I know to temper my expressions of joy at small things like a satisfying pattern or a bottle that’s just the right shade of blue, and to hide my sensory distress at a clothing tag or the sound of an ambulance going past.

But sometimes it’s wonderful to drop the mask in the company of people who understand. I still reminisce about sharing settees and coffee with four fellow writers and artists at the Autism and the Arts Festival in 2019. A group of women chatting in a café is an ordinary sight (well, it was before coronavirus), but such gatherings are something autistic people would often avoid. They expose our differences – the way neurotypicals might find us a bit odd or ‘off’ or intense.

Autism and identity

I felt the same sense of dropping the mask when talking to autistic adults living near me in the North East about their experiences of lockdown. 

Photographic montage artwork showing a portrait of a man wearing glasses and a patterned blue shirt who is looking to camera. He is visible from the chest up and is looking to camera, head slightly turned to his left. In the background is a green bush covered in pink flowers. Digitally montaged on the image above his head, in an orange all caps font, are the words, "being outside of my own safe and controllable space at home, and in my garden", the text continues below his head, "is leaving me feeling unsafe and frankly, creeped out'.
Kieran Rose. © Colin Potsig for Wellcome Collection.

Kieran Rose.

Although the circumstances were strange, it felt easy to talk to Kieran Rose, whose work as an advocate, trainer and speaker I was familiar with from “autistic Twitter”. Through this online community, I have learned how autism is so entwined with identity that most autistic adults prefer to be described as “being autistic” rather than “having autism”. 

Meeting Kieran in his garden, being careful to stay two metres apart, he told me that most of his friends are autistic. This makes me think about my own lockdown routines. I do a nightly quiz with a male autistic friend, and I’m involved in two Facebook Messenger threads with autistic women, all professional creatives like me, in which we share problems, quips and rants. Plus I have my weekly FaceTime call with an autistic friend who also lives on her own.

I do know many non-autistic people – some of my best friends are not autistic – but there is something powerful in sharing what Kieran calls “some form of connectivity with people who intuitively understand how I’m feeling”.

Communication between autistic people is just as efficient as communication between non-autistic people.

Much medical literature and research about autism still focuses on the deficits of autistic people, particularly when it comes to communication skills. But recent research by Dr Catherine Crompton has been a game changer. It found that communication between autistic people is just as efficient as communication between non-autistic people – it’s when you get mixed neurotypes that communication difficulties are more likely. 

Photographic montage artwork showing a portrait of a woman from the chest up, holding a blue umbrella with a star pattern, over her right shoulder. In the background is a green conifer bush or tree. She is look down to the ground, camera left. Digitally montaged over the top of the portrait at the top of the image are five emojis depicting, a home, a masked face, a heart with a dog's head in a star, a rainbow and a pair of headphones. There are 2 transparent speech bubbled. One is saying, "I don't need pubs restaurants or big social gatherings. I don't care that I haven't had a haircut for months or been able to leave my hometown." The other speech bubble says, "Keeping to myself and spending time alone is something I've mastered years ago." The whole artwork is bordered with an inner yellow and outer pink frame.
Caitlin McDonald. © Colin Potsig for Wellcome Collection.

Caitlin McDonald.

Dr Crompton’s research supports autistic sociologist Damian Milton’s theory of a “double empathy problem”. He says that the prevailing medical model that sees autistic people as lacking empathy comes itself from a striking lack of empathy for the different ways in which autistic people convey their thoughts and feelings.

Spending time alone

Talking to dog groomer Caitlin McDonald in her family garden, the world felt almost normal. She admired my TARDIS umbrella and said she was thinking of getting a TARDIS tattoo. So many autistic people connect over what the diagnostic criteria call “special interests”, which I think should be celebrated as passions or joys. 

Caitlin says she’s finding some aspects of lockdown easy because “keeping to myself and spending time alone is something I mastered years ago, while I feel neurotypical people struggle with it so much more”. But she also feels “it’s harder for autistic people without a strong support network, because so many of the rules have changed and accommodating those changes on your own is very difficult”.

I also chatted to carpenter Will Carter, who said he thought lockdown had either “knocked autistic people into or out of routines”. He was finding that a lack of social demands had freed him up to focus more on his fitness and wellbeing.

But being self-employed during a pandemic has it challenges. Will, Caitlin and Colin Potsig (the photographer who created the portraits accompanying this piece) are all being supported by Spectrum Enterprises, a social enterprise which aims to “enrich the working lives of autistic people”.

Photographic montage artwork showing a black and white image of the palm of an outstretched right hand of a man, pushed against a pane of glass. Behind the hand, in the distance and out of focus can been the seen the bearded face, arm and upper body of the man. Digitally montaged onto the image above the hand in a typewriter font are the words, "lockdown is either knocking" which continues below the hand, "autistic people into a routine or out of routine"
Will Carter. © Colin Potsig for Wellcome Collection.

Will Carter.

The stress of shopping

Meeting poet Jane Burn outside the house she is filling with her artwork, I reflect that many of us find spaces, such as the poetry world, where our quirkiness is a plus. She said, like me, she was writing a lot of poems, which were coming like “word rain” during lockdown. 

Jane and I discover that we’re both finding shopping challenging. She said it’s so stressful that she often cries in the shop. I remember doing the same the first time I went into Tesco during lockdown and now only venture into my local Co-Op. Following the arrows, negotiating the new directives about distancing, and “not getting how other people don’t get it” are all difficult. 

This all made me think of the truth of what Kieran Rose said: “Lockdown has applied extra layers of trauma on… autistic people [who are] existing in a world which normally actively seeks to invalidate, exclude and isolate us.”

Finding my true autistic self

Our passions and our support networks are vital. Writing has been important to me, and I have felt so lucky to live by the sea, where I get intense joy from walking every day and have started swimming again.

I spent years living a busy life as a radio journalist, then as a performer, poet and broadcaster and creative-writing facilitator. Even after my autism diagnosis I pushed through tiredness, sensory overload, anxiety and what I now recognise (thanks to the writing of autistic adults) as “autistic burnout” – the exhaustion caused by continually camouflaging my autism.

Existing statistics about the wellbeing of autistic adults are concerning: we’re twice as likely to die prematurely and our suicide rate is over nine times higher than average. It has been suggested that isolation and the effort of masking are to blame. Despite this, only 1 per cent of autism research funding goes on improving the lives of autistic adults.

It has taken lockdown, and living alone after my divorce last year, to finally make me slow down and reduce my social input, traveling and work. I am finally giving myself permission to be my true autistic self. I hope this will last beyond lockdown and into a world where the needs of autistic people are better accepted.

About the contributors

Photograph of Kate Fox

Kate Fox

Author
katefox.co.uk

Kate Fox is a stand-up poet. She has made two comedy series for BBC Radio 4, is a regular voice on shows like ‘Pick of The Week’ and Radio 3’s ‘The Verb’, and has been Poet-in-Residence for the Great North Run, Glastonbury Festival and ‘Saturday Live’ on Radio 4. She has a PhD in Performance from the University of Leeds.

Photograph of Colin Potsig

Colin Potsig

Photographer
colinpotsig.co.uk

Colin Potsig is a photographer who was diagnosed with autism later in life. He specialises in portraiture and has had two successful projects documenting autistic people ‘You, Me and Autism’ and ‘You, Me and Autism Too’.