- June 16, 2020

This is one story as part of the Voices of People with Disabilities during COVID19 Outbreak series

Names may have been changed to protect the individuals mentioned in the story.

Charlotte is an  autistic woman in her late 60s living in Tasmania, an island state of Australia. The state has a population of about 535,500 as of September confirmed. Only three COVID-19 cases remain active in the state, all located in the North-West[1].

Charlotte, who lives alone, is immuno-compromised, so she has not left her house since lockdown. “I really like the isolation. Not having social interaction makes my life easier, but sometimes I have to interact with people online and I am finding it hard”, she says.

She explains that it has taken her many years to learn to interact socially but that ability seems to be vanishing. “I really do not want to see my doctor because talking to people, particularly in person is now very hard”, she says. Charlotte worries about if she will be able to cope with being in large groups again and see her family. “I think it is likely I can only speak to them as a group for a few minutes”, she says.

Experience of autistic persons during the pandemic is hardly documented, and even when some activities are designed to support persons with disabilities, challenges and requirements of persons with autism is often overlooked. Charlotte has been in contact with a disability organisation in her area but the only service relevant to her is a weekly online social group. “As I am having trouble socialising, that actually makes anxiety worse although I am grateful that they are trying to support us”, she says.

Accessing medical treatment

Charlotte can access the medical treatment she needs. “My doctor has a room where I can wait alone if I need to be examined. Some things, like my flu vaccine, I received sitting in my car in the car park but I cannot use public transport or taxis due to being immuno-compromised », she says.

Charlotte has set up routines which help in her daily life. “With COVID-19, I have had to change those routines so I find it extremely difficult to fit in things that are out of the ordinary. For example, I miss medical appointments, which annoys people”, she says.

On some days, Charlotte is too anxious to leave the house, particularly if she has to go to the hospital where she cannot avoid contact with people. “I am having treatment for cancer. Everyone is very kind but one nurse who makes constant comments about autism being in the mind, particularly if I do not make it to an appointment. I feel very stupid and guilty when she does that».

Changes in routine

Due to COVID-19, Charlotte is unable to go swimming, which she used to do 3 times per week. This has had both a physical and psychological impact in her life. “It helped me manage depression and anxiety without medication. Without it, I am experiencing high levels of both. I have also gained weight », she explains. As Charlotte is immuno-compromised, she cannot go grocery shopping and uses home delivery. “I have to order it 3 days ahead but it is hard for me to plan in advance. When they have run out of products I ordered, they substitute it for something else and sometimes these are things I cannot eat, so I eat a lot of noodles, which is not very healthy”, she says.

Charlotte is worried about not being able to manage her mental health conditions due to lockdown. Phone counselling has not been of much use for her: “I tried talking to a helpline and the lady told me to join a club, which I cannot and also suggested online dating. That sent me into a very big panic attack”, she says.

Securing an income

Charlotte is a consultant and her work is not consistent as it relies on contracts. “For some weeks, I did not have any work and money was tight”, she says. She struggles at work when she has to talk to people but is concerned that if she turns down work, it will mean not getting called again to do it in the future. Charlotte has received a government pension, including a small COVID-19 supplement, which she appreciates.

She explains that the situation for autistic people living in remote areas is much more difficult than hers, especially for those who cannot communicate verbally. Support workers are often not able to go to people's homes and many do not know how to order groceries online. “Aboriginal communities are the worst off because of poverty, isolation, difficulty accessing medical care and discrimination”, she says.