“Everything in past year has been unsettling. Everyone’s routines and lifestyle have had to change and it seems as if there is always something else going wrong. This makes it even harder to feel like your life will return to normal,” said Lindsay Carter (20), from Johannesburg.

She was diagnosed with ASD at the age of 15 and currently works as a part-time science tutor/facilitator for Grades 6 to 11.

“Having autism in this situation makes it harder, because my brain doesn’t like change or uncertainty and there’s been plenty of both recently. The last two years have been difficult.”

Although the recent spate of unrest affected Carter’s concentration at school and instilled fear in her, she noted that the COVID-19 restrictions have been both negative and positive for her.

“Social distancing has benefited me as an autistic person because I get sensory overload from touch and light. If people bump me or hug me or are too close, I get triggered. If something is too bright, I can easily feel overwhelmed. I also get overstimulated by trying to analyse everyone’s emotions based on their facial expressions. Now that everyone is wearing masks and I can’t see their faces, it feels a bit easier, because I’m not taking in all that input from every person I walk past. I feel calmer in public places because there’s less chance of someone coming into my space or accidentally touching me.”

Carter has a cat named Quinn and a dog named Chiki, which she regards as her furry friends that help to make her feel safe and calm.

Kids living with autism need structure

The mental and physical conditions of these children living with autism have noticeably deteriorated, highlighting the need to focus on the requirements of special vulnerable populations during this crisis.

“From my observations and encounters with parents and caregivers, their children’s conditions have worsened due to the loss of a daily routine and the inability to access and receive support from primary care settings. The increased worry of parents further exacerbates children’s psychological well-being and increases their challenging behaviours or meltdowns, as these children have to cope with changes and may not know how to communicate their frustrations,” said Selina Jele, regional development officer at Autism South Africa (A;SA) in the Free State.

“Many parents are trying to promote their children’s learning and emotional health without the usual support structures like school activities during the day.”

Jele has worked with A;SA for eight years and her role includes negotiating and liaising with national and provincial governments, as well as other institutions or affiliated bodies on matters concerning the needs of individuals with ASD and their families.

“Some of the problems that children and adults living with ASD experience include understanding what COVID-19 is and the measures required to curb it.  Many have challenges adhering to social distancing and hygiene-related regulations in response to the pandemic. Some have stopped receiving special education during this period, which increased aggression, hypersensitivity and behavioural problems, as well as altering sleep and appetite patterns. Immediate support for at-risk parents and advocacy has not been the same,” she said.

A;SA is an organisation that promotes awareness, understanding and support of ASD at all levels throughout South Africa, through organising conferences, symposia, advocacy and workshop on the condition. The organisation also provides support for caregivers through counselling via its main office, groups on WhatsApp and telephonic calls to ensure they are coping. It also engages caregivers through online courses and materials that are made available to them.

Limited access to information

“Access to information in my province during lockdown has been limited to those who can afford data and electronic devices. This situation has worsened over time, as many families are experiencing unemployment due to the pandemic and can’t afford to buy data. If they are not linked to a caregiver, they miss a lot of broadcasts and distribution of information,” said Dineo Mosiane, who is an A;SA regional development officer based in the North West.

Mosiane referred to the struggle that most caregivers and parents face with potty-training children with ASD as an example of a topic often raised in online workshops.

“Our regional development officer from the Eastern Cape has been running these online workshops during lockdown, but it’s only those who have the means who are able to access and attend the workshops. It is concerning and sad for families that do not have access, because they miss out on crucial information. We have discussed sponsoring some caregivers with data to provide access, but this depends on the availability of funds that we receive as an organisation.”

Mosiane explained that another challenge faced by parents is that the dates for formal assessment at public hospitals are often too far for them to wait.

“I often deal with new parents in need of formal assessment for their children who have to wait for lockdown restrictions to be lifted before they can start making preparations. Public hospital dates are too far out for them to wait. However, they don’t have much of choice as services for ASD diagnosis in the North West are limited. Without a proper diagnosis, it is difficult to receive the directed medicine that will assist with managing life with ASD.”

Mosiane directed caregivers and parents who need information to A;SA’s website, which contains a lot of educational resources that can provide support.

Relieving panic and anxiety

“I use a variety of stimming toys to calm down and listen to classical or Christian music when I feel overwhelmed. I use weighted/heavy things to feel grounded and safe. I sometimes wear sunglasses indoors because of the bright lights. If I feel a meltdown coming, I will find a dark, quiet room and sit there until I can move again. I usually like to be alone and don’t want to talk when I’m trying to get over an anxiety attack or meltdown. My family is a big part of my support system,” said Carter.

Mosiane advised that engaging in outdoor activities, reading books, playing games and spending time doing creative things are good ways to relieve panic and anxiety. She noted that the most basic and important need that people living ASD have is for love and care.

“Families and support structures should never forget this. The extra support they can give is being physically available to assist a child, even just for two hours, to be understanding and empathetic and to also learn as much as possible about ASD,” she said.

“Caregivers can speak to a child’s educator and obtain some academic work to try to continue with their classroom routine. We also provide parents with daily activities to engage with their children at different levels. Children’s comprehension levels differ, so caregivers need to use material relevant to specific children.” – Health-e News