Illustration by Max Ferreira; edited by Angela Mascolo
Angela Mascolo speaks to Exposure contributors Max Ferreira and Zoe Rattigan about autism experiences during the pandemic
People with autism have been one of the groups hardest hit by Covid-19. Some of the challenges they face include changes to their routine, difficulties maintaining physical distance, sensory issues with wearing masks and reduced access to therapy and support.
For people with autism, structure and routine can help them maintain predictability and control. In these uncertain times, many young people with autism therefore feel more anxious and are finding it difficult to cope with changes in their routines.
Caroline Steves, Chief Executive of the National Autistic Society, highlights that the “sudden unexpected change and disruption to everyday life is particularly hard for autistic children and adults.”
In addition, autistic children and young people may struggle to identify any physical symptoms of Covid-19 and to talk about the emotions the situation will create.
This is made more troubling by the fact that diagnostic assessments for autism are likely to be put on hold because of the pandemic.
It’s therefore more important than ever that people with autism get the support they need during this time and that we hear from them directly about their experiences.
I spoke to Exposure’s autistic author, Max Ferreira and autistic contributor Zoe Rattigan about how they’ve been affected by the changes brought about by Covid-19 and what they’re doing to cope.
Angela: Have you been affected by any of the changes put in place because of the pandemic?
Max: My job in retail has been affected significantly by new guidelines. It hasn’t always been easy trying to maintain social distancing and wear a face mask all day. It’s also been frustrating not being able to go on my usual family trips and attend train exhibitions, which I visit every year. They’ve all been cancelled and are yet to be resumed.
Zoe: The changes have really affected my anxiety. It’s been difficult maintaining social distancing and I get stressed reading conflicting articles and information on social media about the pandemic; it’s difficult to know what to believe.
I’ve been especially worried about the possibility of a second lockdown. I regularly see my family and friends in person, but during lockdown this wasn’t possible, and it was difficult only being able to speak to them over the phone. I wouldn’t want this to happen again if a second lockdown were to be imposed.
I also can’t physically wear face coverings as I can’t breathe through them. During lockdown, my teacher invited me to go into college a few times to help her send out work packs to students. I didn’t mind wearing gloves to do this but keeping the mask on was extremely difficult. I had to keep pulling it down under my nose as I couldn’t breathe. My youth worker pointed out that there’s no point in wearing a face covering if I have to keep touching my face.
Fortunately, my teachers were understanding of why I couldn’t wear one, but I get worried that people are going to comment on this and judge me for it when I’m in public.
Angela: What are some of the emotions you’ve been feeling lately?
Max: Annoyed, afraid and overly cautious because my routines have collapsed. I’m worried about catching the virus and following regulations, which are constantly changing.
Zoe: Anxiety, but since my youth club (Somers Town) has opened, it has been a weight lifted off my shoulders.
Angela: What things have you been struggling with?
Max: The change in my routine has been difficult to deal with. As a young person with autism, it’s very hard to fix up new plans to keep busy. I also get worried by the possibility of having to self-isolate. What’s more, as a key worker in retail, it’s been stressful ensuring that I’m careful of surroundings and that I don’t stay in close contact with customers.
Zoe: My anxiety has definitely increased with so much uncertainty about what’s going on. The pandemic has also affected my physical health. I’m usually out all the time with my friends and so I found myself being lazier, not being able to do that at the beginning of the pandemic. Whilst I do like staying at home sometimes, being at home all the time during lockdown wasn’t good for me and I now can’t imagine staying at home too often anymore. That’s another reason why I worry about a second lockdown. I’m also now walking everywhere as I can’t wear a mask and want to avoid confrontation on public transport.
Getting through puzzling times with autism; image by Angela Mascolo
Angela: How have you been managing these difficulties?
Max: I’ve been keeping up with hobbies and routines as much as I can, such as reading, drawing, baking, creating a USB library and watching TV. I’ve also been keeping busy with activities that need to be done like walking the dog, cutting the grass, repainting and cleaning out my bedroom. I’ve also enjoyed spending more time with my family and less time in my room.
Zoe: Virtual Youth, which was held by my youth club, really helped me during lockdown. If it wasn’t for my youth workers, my anxiety would be all over the place. They’ve really helped me keep calm. Although Microsoft Teams was a nightmare to use, I was grateful to have been able to participate in my usual youth group activities remotely such as debates and karaoke.
Recently, I’ve been able to go to my youth group in person again. It’s helped to have tables two metres apart and reminders to socially distance in line with government guidelines, and to have access to hand sanitiser. Even though I couldn’t go on any of the residential trips, I’ve really enjoyed meeting new people.
Angela: How have friends / family / carers been supporting you?
Max: My family have really helped to keep me reassured that we are all in this together and that everything will be okay. My mum has also been encouraging me to get involved at home more. My carers have been taking me and picking me up from work as I’m not using public transport.
Zoe: My family has been fantastic. They’ve been here for me throughout, especially my mum. I was really happy to be able to see my family for the first time in five months in June.
Angela: What are some of the resources you’ve been using to manage your wellbeing?
Max: I’ve subscribed to the railway magazines I regularly read as I can’t buy them in store and I have also done some overtime at work to keep me busy. Walking my dog has also helped a lot.
Zoe: Alongside being able to go to my youth club again, I’ve really enjoyed being creative using ‘Flipaclip’ to produce TikTok animations and listening to music.
Angela: If a friend told you they were struggling with social isolation and their mental health during this time, what would you recommend they do?
Max: I would say to not overthink the negativity and try to focus on the bright side. For example, reflecting on how lucky we are to have family and friends who are all in this together with us.
Zoe: I would tell them to talk to somebody they trust and work out how they can make you feel better. Talking to people really helps me so I would really encourage them to communicate with family, friends, key workers, social workers or anybody they can open up to. I would also encourage them to engage in hobbies to take their mind off of things.
Angela: Do you have any other thoughts?
Max: If I was very vulnerable (for example, with a health problem), still in education or having to work from home, it would be even more stressful and frustrating to adapt to a different routine. At the moment, I’m very lucky to have a supportive family and a paid job to keep me busy, as well as being able to regularly contribute to Exposure.
Zoe: There is always someone who can listen and support you. Don’t be afraid to tell people how you feel. Others can also help by being understanding of people who can’t wear face masks and taking time to listen and understand how young people’s mental health has been impacted by the pandemic.
It’s important to note that the issues raised by Max and Zoe on unpredictability, changes in routine and sensory sensitivities are common autistic traits and have always been experienced by many other people with autism.
As autistic novelist Naoise Dolan highlights, “Before the pandemic, members of the autistic community were constantly adjusting themselves to fit around society.”
So much has been changed to attempt to keep people safe and cater to their needs during the pandemic. Yet, prior to Covid-19, people with autism were constantly expected to make changes for themselves to adapt to societal norms and ‘camouflage’ autistic traits.
Going forward, we need to continue to learn from people with autism on how they have been affected by Covid-19 and what their needs are so that society can better accommodate them now and into a virus-free world.
If you’re struggling as an autistic person during Covid-19, check out these links for advice and support:
Guidance from Gov.uk
Resources by National Autistic Society
Resources by Autistica
Advice from the Royal College of Psychiatrists
YoungMinds on coronavirus, autism and mental health
Autistic & Unapologetic blog
Ann’s Autism Blog
A comic strip explanation of the autism spectrum
Testimonies from BBC Bitesize
Our thanks to Thrive LDN’s Right To Thrive grant scheme for making this project possible.