Autistic experiences during coronavirus

Lou is an autistic woman who resides in a suburban home with her partner and autistic child. Spending all their time at home since March this year, Lou shares how life became restrictive for her child. In addition to that, Lou worked in Covid19 testing clinics, and explains some of the physical and emotional exhaustion that has come from her work.

“Like many people, the initial wave of the pandemic saw us doing a lot at home, creating a protective bubble for ourselves, with activities like reading and chatting with our neighbours from a distance. I continued my work with most days being the normal work I was used to, except doing it from home, which I enjoy. I liked having the time away from the stress of other people around me while not having to travel two hours a day for work.

“There were days I worked in Covid19 Flu Assessment Clinics in full PPE including the gown, gloves, P2 mask and goggles. My face would often feel swollen from the P2 masks and the non-stop interaction with people during 8-hour shifts were both physically and emotionally exhausting. Wearing surgical masks in health facilities was more of an issue as they sit directly against my nose and mouth while irritating my ears. With mandatory mask-wearing for regular outings, I made my own fabric masks tailored to suit me.

“Life completely changed for my child as well who says their life is being turned upside down. School, social, creative and sporting activities were cancelled, and they couldn’t even go to the park or skatepark. Life became very restrictive. We also endured non-pandemic traumatic life events, which was hard to get through without being able to meet extended family, only increasing the feeling of isolation.

“I quickly realised how hard it was to cope and self-regulate when a lot of support I had such as online grocery shopping, cleaning services and massage therapy stopped.

“It goes without saying that I worry about a lot of things going through this pandemic, such as increased infections, the mental health of my family, and my elderly parents. I also worry about my own complex chronic health issues. As for my child, I worry about their mental health, resiliency and ability to cope with the changes, especially if they don’t get to experience some of the milestones in life that Covid19 has impacted.

External article: Know Your Normal Toolkit: A mental health toolkit for young people

“In trying to stay positive, as a family we changed our routine by doing various activities like setting up a veggie patch and having BBQs outside. I have also been able to maintain my interest in creative arts. As social contact is important to us, we made sure to arrange video calls with family as well.”

Image: broccoli plant from Lou’s veggie patch

“The reality is that whilst we are all experiencing this pandemic, we are experiencing it differently. What’s important is to not isolate yourself and seek connections where you can in real life and online.”

Life for Cat – a 41-year-old mother – and her family, has been challenging and tiring to say the least. Being a neurodivergent family of 4, Cat says there is much adaptation to lifestyle changes involved daily. However, she explains that while there is a lack of respite with the current circumstances, the family also does not want to be exposed to coronavirus risks.

“Our children have been thrown into the tech world way ahead of our preferred schedule, using tablets for remote learning. Not only do they require supervision at all times while accessing the internet, they also need one on one support and direction to complete their schoolwork. It’s literally taking my husband and I helping one child each every day and because they are at home and with their parents, we see the full range of their emotions and perceived limitations as they battle to complete the tasks.

External article: Tips on how to stay safe online from the Australian eSafety Commissioner

“Zoom meetings with our occupational therapist are not the same either, and despite all of our efforts, we have had to pause speech therapy, and psychology at this time. The kids were progressing so well with their psychologist so that’s been hard. Probably one of the more frustrating parts of coronavirus restrictions is that we were given NDIS funding to fully meet our kids’ needs, for the first year ever. We have, however, been unable to use it for many of the things we had planned.

“Our lack of a need to be places each day has become quite challenging for me, because it means I have no routine or deadlines to help create a system. Wide open spaces in regard to time don’t work very well for me due to poor time management, limited ability to prioritise tasks, and executive dysfunction.

“School was never a walk in the park for our kids, or for us as parents getting them there, including dealing with the associated emotions after school. However, I’m wondering when they’ll go back, and how we will make the decision to send them, potentially putting them at risk of getting coronavirus.

“These days we mostly avoid going out and unfortunately that includes to exercise. We get our groceries delivered and only go to a small local chemist when needed. Our kids are anxious about the coronavirus, people wearing masks everywhere, and feel they must also wear masks. But they don’t find them comfortable. My husband and I can manage wearing a mask for a little while, though it’s certainly not the same and I feel claustrophobic. We recognise the need for them and don’t mind abiding by the rules in the slightest, but I’d say we avoid outings to avoid the masks.

“In some ways we’ve been able to enjoy more family time, but it’s also been stressful. We have not developed any new hobbies and have been mostly in survival mode. We have taken a bit more time and care into making the home more organised and I have spent more time with my potted plants, which is good for my mental health.

“It is a very challenging time. However, fighting against the risks, rules and reality of a pandemic only drains our energy. I encourage people to find existing or new ways to feel settled, happy and fulfilled. Also listen to yourself, and when you’re struggling, reach out to your support network. We truly are not alone, even though our experience of current events is individual.”

Peter, 20, lives with his parents and autistic younger sister in western Melbourne. Prior to the coronavirus pandemic, Peter participated in School Leaver Employment Supports (SLES) twice a week and attended a day program three times a week. Like many, Peter says the biggest change for him was being homebound.

“I lost some of my support services and my day program is shut. I can’t go out bowling and play basketball with my friends anymore either. I enjoy going to the library but even that is closed now. With that happening, I have to do all my programs on Zoom. I find this very hard to do, especially in trying to listen and understand what people are saying, and then answering questions.

External article: Ensure Zoom meetings are accessible for all participants

“I also worry about my sister getting sick. She has seizures and it makes me sad seeing them happen. I worry she will need to go to the hospital. It is just hard not knowing when things will be normal again, when I can make my train journeys again. I can’t use public transport now and that makes me very sad too. But if I do go out, I wear my disposable mask which I find easy to do. “At home, I’ve started daily activities like making Lego and taking drawing classes with Mo Willems on YouTube. I’ve also been doing yoga with mum and once a week, I learn cooking with my instructor Simon via Zoom.

“There isn’t much I can say to others out there not coping well, because I don’t think I am myself.”

For 18-year-old Sarah, this would have been the start of a new year after finishing high school. But the arrival of the pandemic brought about a fear of leaving the house, leaving this autistic young woman trying to make the best of the situation in a rather busy household, she says, with her parents, autistic brother and her three furry friends: a dog, a cat and a rabbit.

External article: 18 Pets who are making lockdown a lot more interesting for their owners

“I can’t go out to do all the activities I used to as I feel scared leaving the house. Wearing a mask scares me too, making me think of being back in hospital. I don’t wear when I do go out. With everyone at home all the time now the house is also very busy.

“With my therapy sessions, everything is done online and sometimes they do not work. My medical specialist appointments are online and I’ve never met my specialist doctor face-to-face. Some things were cancelled like my swimming pool physiotherapy. Having to sometimes go somewhere different for physiotherapy and seeing my therapist wearing a mask and goggles also made me very scared.

“But I’ve done some new things that I find fun and relaxing. I learnt how to weave a rug and cook my own lunch with the help of my support worker. I practice my sign language and something new I am doing online is art therapy. If it’s not these, I love dancing to music on YouTube. Colouring-in and cutting and pasting also relax me.

“If there is any advice I can give, it is to take things slowly. It is okay to take a break from things like therapy if it is too hard to do online. It is okay to take a break from people and just relax with a warm bath, or watch your favourite shows on tv. Do things that relax you.”