“When Something’s Wrong, It’s Really Wrong” – Autism Under Lockdown

I’m a novelist from Dublin and before coronavirus, all was in flux for me.

I’d been writing full-time since signing a book deal a year ago (my debut Exciting Times is out this month, thank you for asking). Because of the promotional commitments this brings, I haven’t led a geographically settled life in months. I don’t fly because of the climate crisis, and I’m easily drained by socialising. I was getting boats and trains between the UK and Ireland, talking to media and booksellers, trying to say the right thing and do the right faces.

As an autistic person, I find it easier to socialise once I’ve learned the script. For months though, I was in new situations, often without another writer nearby to copy. There is nothing like a change in circumstances to make me realise how much I rely on mimicry.

I’d also relied on routine. Because my location kept changing, I found sensory familiarity in supermarkets, cinemas, coffee houses. They have similar interiors from city to city, the same products, the same tastes and textures and sounds and smells. I hate my habit of walking 10,000 steps every day after learning that the number was arbitrarily settled on as a marketing device to sell pedometers, but I still made sure to get them in. To meet this goal I had to leave the house; to leave the house I had to get dressed, and to get dressed I had to get out of bed: all good habits, all automated by the 10,000 steps rule.

Then the pandemic hit.

In March, I was visiting London when Ireland’s lockdown began. The UK was behind the rest of Europe in government action. I fretted to my mother on the phone and osmosed the panic on Irish Twitter, while the Londoners around me carried on as normal. I saw them sitting in restaurants when I went for my daily sanity walk and felt their lives were running parallel to mine.

Once it became clear that potential travel restrictions could leave me stuck in the UK if I didn’t get out soon, I took the boat back to Dublin in mid March. I’m still here. Before coronavirus, I’d been waiting for book promotion to peter out so that I could get a fixed address and have a normal life. Now, as if in a game of musical chairs, I’ve ended up in my parents’ house because it was the only place for me when the tune stopped.

After returning to Ireland, I had to self-quarantine for two weeks; not even my comforting supermarket trips were allowed. That initial fortnight is up but I’m still frightened to go out. Walks are allowed, but I get obsessed with the rules. I measure out the metres and feel apprehensive if they’re breached. Typhoid Mary’s chutzpah seems to have skipped me.

Staying at home has made my world smaller and quieter. I rely less on sunglasses and earphones now than when I’d needed them to deal with the audiovisual onrush of crowded streets. But when something indoors is wrong, it’s really wrong. I get headaches from dripping taps or the smell of disinfectant. Because I’m in my parents’ house, and because I’m doing what I did during a protracted mental breakdown in my teens – never leaving the house – there’s an inevitable feeling of regression. My decade-long recovery has enabled me to enjoy life but now I’m behaving identically to when I couldn’t. I’m a solitary person, but that doesn’t mean I like being solitary in one house for the foreseeable future.

Before coronavirus, I regularly fell into ‘climate spirals’, where I couldn’t focus on my immediate circumstances because I was too consumed by the reality of global heating. I didn’t fly for similar reasons to why people don’t breach social distancing now: denying an emergency eventually becomes more stressful than adjusting to it. I hate not knowing how the pandemic will unfold and I hate not being able to screen out how much I hate not knowing. It feels more productive to consume the news all day, because at least that way I’m learning something and my fears are somewhat grounded in reality. The alternative to frantic research, for me, tends to be equally frantic speculation. I can’t not think about coronavirus.

But on a day-to-day level, I seem not to mind a lot of the changes as much as allistics (non-autistics) do. I’m relatively unmoved by rituals and objects; I see first-time authors despairing about not getting to shake hands with readers or see their book in shops and wonder if I’m cold for not sharing their disappointment. But I think that’s internalised ableism talking, when really I’m just wired differently.

The same internalised ableism is screaming at me that I’m wrong to see anything positive about my shift in circumstances. But it is fair for disabled people, autistics included, to point out that many now-emerging accommodations could have been granted sooner if people had cared about accessibility. I find it autism-unfriendly having to promote my work in person for many reasons: the socialising, the sensory overload, the organisational and practical demands. But I’d accepted all this as the cost of having a writing career. But the moment allistic authors needed remote adjustments, they happened.

For as long as I can remember, I have cycled between masking and burnout. With the best of intentions, allistics often reassure me that I come across fine – but that’s exactly the point for me. It’s not that I can’t communicate with them but that the level of performance and decision-making it requires is completely unsustainable. It would exhaust anyone to have to do it for long. I can keep up conventional social interaction for a time, and then I collapse. I’ve often wished to be locked up; not because I like being housebound but because I can’t do my life – all of it – anymore.

My circumstances are mine specifically, of course. Autism is never the only spectrum that autistic people occupy, and it’s not always the most pressing factor shaping our quarantine experience. As autistic activist Riah Person pointed out, black people "are more likely to not have [coronavirus] symptoms believed or have access to care," for instance.

Familial labour also affects lockdown life. I reached out to a community of autistic women to hear how they were coping. Overall, the ones without caring responsibilities or high-risk household members seemed to share more of my calmness. My family are adults and are happy to leave me to my own devices, but autistic mothers are finding it more difficult to protect their recharging time. Kay Kerr from Australia, who has children, told me that "the lack of alone time is really hard," although, like me, she is "enjoying the minimal outings and the slower pace."

Of the women I spoke to, I sensed a widespread internal discord at finding areas of solace in a time of near-universal fear and sorrow. Amy Crean, in Ireland, said she shared my "guilt for feeling relieved" while noting that autistics are still facing "the usual numb sad stuff" that everyone else shares.

But autistic people dealt with these challenges in the old world, too. Grace Kenny noted: "I have a lot less responsibilities now so I'm using the time to find new coping mechanisms for daily stresses, such as replying to texts."

Londoner Charlotte Watson echoed my conflicted feelings and agreed there is a new solidarity in having those troubles shared. "I quite like having a 'legitimate' outlet with which to direct my anxiety, one that other people understand."

Before the pandemic, members of the autistic community were constantly adjusting themselves to fit around society. Now, it feels as though allistics are adjusting, too. Everyone wonders how the lockdown will progress but autistics face an additional question: Will the new world accommodate us better? We’ve seen how possible it is to change working arrangements rapidly, but this didn’t happen because society started listening to autistic people; we incidentally benefited from the adjustments that non-autistics needed. No wonder so many of us feel at odds about the new normal.

Exciting Times by Naoise Dolan is out on 16th April, published by Orion Publishing. Naoise will also be in conversation with Refinery29's health & living writer Sadhbh O'Sullivan over on Instagram Live for Rixo on Thursday 16th April. Keep an eye out for more details.