Coronavirus: living with autism in a pandemic

In a new blog post, Cara Patel – a PhD student on our National PhD Training Programme in AMR Research, who has Asperger’s syndrome – explains how she’s coping with the lockdown. Cara’s PhD, based at the University of Exeter, explores the impacts of pollution on antimicrobial resistance (AMR) in river catchments.

I was inspired to write this post after reading an article on the reasons why people are finding video calls so mentally draining, when working from home or catching up with friends or family. The reason, according to the article, is that people have to focus more energy (compared to talking face-to-face) on reading people’s facial expressions, body language and tone of voice.

I found this fascinating, as this is something I have to do all the time, regardless of whether I am talking to someone face-to-face or over a screen, so I never noticed a difference. Neurotypical (i.e. non-autistic) people, due to the skills they develop in early childhood, have the ability to subconsciously read people and group conversation. It’s second nature to them, and doesn’t even cross their mind when talking to someone. For me, those skills are not something I picked up during childhood, they are things I had to actively learn and practice over time.

Like most of you, I've had to leave the office and switch to working from home. I cannot emphasise how important having and maintaining a routine is to me, and suddenly that routine was taken away. Imagine my surprise over the next few days after that, where I had pretty much no change to my work productivity. Maybe this wouldn’t be so bad, after all?

It didn’t last. After the first few days, the disruption to my routine caught up with me. I couldn’t focus on anything for more than 20 minutes at a time or I’d get a splitting headache, I had to lie down in between spurts of work to calm down again, and I was unmotivated and easily distracted.

It has now been a few weeks and I’m gradually getting back on track. Here are a few things I’ve picked up along the way that people – autistic or otherwise – might find useful (although I'd like to highlight that this is just my opinion, and I don't speak for everyone who has autism or Asperger's syndrome).

Cara's tips for coping with the lockdown

• Make a separate space in your house and dedicate that space for work only. It was tempting at first to use working from home as an excuse to work comfortably from my sofa or my bed, but I couldn’t focus there. I have set up desk space in my spare room, which is where I get all my work done now, and having that mental separation of entering a “work space” has been super helpful.

• Take some time completely off work to mentally adjust to the changes. Over the bank holidays, I've tried not to think about my work. I didn’t discuss it with friends, I didn’t read any work emails, I went on long walks, and I dedicated time to reading and other hobbies that I find relaxing.

• Set yourself one, easy task to accomplish every day. Something I've found really helpful, especially on days when I’m feeling low, is to have one achievable thing to do. And if I do nothing else, at least I’ve done that one thing.

• Be kind and understanding to yourself. You are probably not going to be at your best right now, and that’s nothing to feel guilty about. It’s so unhelpful to be bombarded by messages on social media about people who are coping “better” than you. They’re not. They’re just coping “differently”.

• Take up a hobby where you can see visual progress. When you're doing a PhD, as with most other work in academia, you often feel like no piece of work is ever completed. Research is like that. Something I've found really helpful is to pick back up some of my hobbies where I can see progress as it happens, and have a final product at the end. For example, I had a small cross stitch kit, and it was great to take each colour at a time, do all the stitches, and then throw away the rest of that thread. Seeing the pile of threads to use diminish, and the cross stitch slowly come to life, was really satisfying.

• Do some online training. I’ve signed up to a free online course (I personally used FutureLearn, but there are hundreds of them) in order to get me back up to speed on genomics, as this is something I will be doing more of as my PhD progresses. When I start on a work-related task and I find myself flagging, I go on to the course and do an activity or two. Seeing my weekly progress bar move along at the top of the screen gives me a little kick of satisfaction, and helps me to get back into the task that I was working on before.

• You don’t have to work constantly for eight hours. Remember that if you were at work, it’s not like you would work from the minute you got there to the minute you left. Don’t feel guilty for getting off your computer every once in a while, just to get away from things.

• Not everyone has to be a superhero, and that’s okay. When you see on the news all the wonderful people on the frontline during the pandemic, it’s easy to feel guilty about not doing what they are. Not everyone is in a position (financially or mentally) to drop everything and become a key worker. That’s totally okay.

Not all of these things will be applicable to you or your situation, but if you decide to try any of them out then I hope they help you. If you gain anything from reading this, I hope it’s that you’re not alone, and we will come out the other side of this. Also, if you are working with someone with autism, please show them some love at this time. They are likely finding it a bit tougher to adjust at the moment, and will need time to get back up to speed.

If you are reading this and have any other tips for how an autistic person may adapt to working during the pandemic, I’d love to hear from you!

Cara Patel (@CaraPatel19)