Living — and being — alone during the pandemic has given me the crucial space I didn’t know I needed to really work out who I am.
Three times in my life, I’ve had similar experiences that were life-shattering and life-changing.
I was 16 when it first happened, 19 the next, and 23 the third time. I am now 24 years old, and I’ve only recently worked out what exactly it was that I experienced each time: autistic burnout.
The term “burnout” has been talked about a lot in recent years in the context of work and stress.
But autistic burnout is different. A 2020 study defined it as long-term exhaustion and loss of function, resulting from chronic life stress and lack of support, usually lasting 3 months or longer.
This exhaustion occurs on all levels: physical, mental, social, and emotional. Many who experience autistic burnout experience suicidal thoughts, too.
I was in a state of autistic burnout when the United Kingdom imposed a strict stay-at-home order on March 23, 2020 in response to the COVID-19 pandemic.
The months prior to the pandemic were some of the most difficult I’ve ever experienced.
In October 2019, I was diagnosed with autism spectrum disorder (ASD). Three days after I’d received my diagnosis, I moved across the country from Edinburgh to London.
My work and living situations both changed immeasurably in just a matter of days, and I was still left reeling with the impact of the diagnosis. It wasn’t long before I started to struggle, and I took a stress leave from work in January 2020.
Things quickly went from bad to worse.
Using what little strength I had left, I moved back to Edinburgh that February, where I could access further autism support. I also decided to live alone for the first time, which I desperately hoped would help.
Initially, living alone didn’t seem to help. I was still feeling suicidal and exhausted — like a shell of my former self.
I started accessing support and seeing friends when I felt able, but this was all very short-lived.
Looking back, it seems inevitable that this was what happened after some hugely destabilizing changes — like an autism diagnosis and moving across the country.
Autistic people are less able to cope with change than others. Major life changes, like moving or changing jobs, are cited as causes of autistic burnout.
COVID-19 was just yet another Big Bad Thing to happen on top of everything else. And it didn’t give me much hope for my recovery.
The one silver lining of the lockdown was that I’d been isolating myself from everyone and everything for months. Now, everyone else was in the same boat, and they could understand how I’d been feeling to some extent.
The first months of the pandemic weren’t much easier for me. I was still in the throes of burnout, and I was fighting to keep myself functional and alive. One thing I didn’t realize then was that recovery from autistic burnout needs time.
This turned out to be exactly what I needed — time alone without any external commitments or pressures.
As summer came along, I found myself slowly but surely becoming more able to do things. I began to feel more in control, more “human,” and more functional.
A major turning point was adopting a cat in May. Being able to focus on the needs of a non-human living thing somehow made me more able to attend to my own needs.
I managed to establish a routine that worked for me, which is key for many autistic people. So much time on my own allowed me to really work out how to be happy in my own company, which I had previously hated.
As lockdown in Scotland eased and we were allowed to meet others again, I was able to work out not just how much socializing I was able to cope with, but also how best to recuperate.
Living alone provides me with a sanctuary of sorts that I can always return to after social situations — a place where I can “unmask.”
A large cause of autistic burnout is a phenomenon known as masking, which refers to suppressing autistic traits in order to “get by” in society.
A 2020 study noted that masking is linked to an increased risk of depression, anxiety, and suicidal ideation among autistic adults.
One participant in the study described the impact of masking as follows: “Long-term camouflaging and masking leaves behind a kind of psychic plaque in the mental and emotional arteries. Like the buildup of physical plaque over time can result in heart attack or stroke, the buildup of this psychic plaque over time can result in burnout.”
I don’t doubt that years of masking is what led to my most recent episode of autistic burnout, but it’s also what led to the two other experiences I mentioned at the start.
At the time, they were diagnosed as major depressive episodes. This is how I viewed them until my autism diagnosis. Looking back, though, I now know them to be episodes of autistic burnout.
Unsurprisingly, nobody realized that I could be autistic at those points in my life due to masking. I only got diagnosed at age 23 because I suspected it and sought the diagnosis myself.
As the pandemic ebbed and flowed, I continued to spend most of my time on my own. Over a year after the pandemic began, I still do.
In many ways I am now “back to normal.”
I’m functional, I know my boundaries, and I can hold down work and other commitments. But I can never go back to how I was before the burnout began in 2019. Doing that would be a surefire way to make myself unwell again.
Living — and being — alone during the pandemic has given me the crucial space I didn’t know I needed to really work out who I am, what I need, and what I want.
The United Kingdom entered a second nationwide lockdown in January 2021, and, at the time of writing, things are finally beginning to ease.
People have often said to me that they don’t understand how I’ve coped so well with living alone during the pandemic. If only they knew how essential living alone is for my mental health and general well-being.
I often say that my ideal situation is living alone with a (very needy and affectionate) cat.
There’s a phrase used in the autistic community: “If you meet one autistic person, you’ve met one autistic person.” That’s to say: Every autistic person is different and has different needs.
I can’t speak for what others in the community want or need, but I hope my story helps to illustrate some of the challenges we face, especially as the world grapples with what “normal” will look like.
Isla Whateley is a freelance writer and journalist based in Scotland, focusing on health, UK politics and policy, and social issues.