COVID-19 – the Impact on Children with Autism, their Parents and/or Caregivers
The COVID-19 pandemic has wreaked havoc with the daily lives of autistic people. Regulations to flatten the curve in South Africa have caused drastic changes in the routines of autistic people because of the closure of Early Education Centres (ECDs), schools and adult learning centres as well as the workplaces of their parents and caregivers. The impact of the changes in childcare and participation in economic activities of parents and caregivers has had disastrous consequences for the physical and mental well-being of autistic persons. It has also caused anxiety for parents and caregivers about appropriate and safe care for their children.
Autism is a neurodevelopmental, lifelong condition characterised by difficulties in communication, social interaction and the need for sameness and predictability. It also manifests in sensory processing differences. There are varying levels of autism with differences in support needs from low to high. During lockdown levels 5, 4 and 3, autistic people struggled to cope with the changes in their daily care to various degrees.
The following are examples of issues and problems encountered by autistic people during lockdown:
• Sizwe (19) lives with his mother in an apartment complex in a unit which has a small garden. He stims which is a practice that allows him to self-regulate and for him this involves talking and making loud noises outside in the garden. During lockdown Level 5, their elderly neighbour complained to the body corporate, indicating that Sizwe was violating the nuisance rules of the complex. Since the lockdown regulations did not allow exercise outside the premises, his behaviour escalated. Without external intervention, he faced the risk of being arrested. A plea by Disabled Persons Organisations to the President for a relaxation of exercise rules for autistic persons was not successful. During Level 4 there was a small window for exercise in the mornings (when parents are often at work) and then during Level 3 (until 18h00) there was a limited reprieve.
• Oscar and Tshepo, brothers aged 12 and seven, are on the autism spectrum. Their older sister, Nandi, an adult with an intellectual disability and her six-year old son, Nkosikhona, who is also on the spectrum, live with them. The children’s mother, Londi, is a nurse and single mother. During lockdown Levels 5 and 4, she had no choice but to leave the three minors in the care of her adult daughter, while she continued employment as an essential worker. Oscar has very high support needs while the two younger children are still toilet training so they need to wear nappies. All three boys were traumatised by the change in routine and suffered meltdowns which can involve self-injurious behaviour and damage to property. This escalated to a point when Oscar climbed the roof of their building and the fire department had to be called to rescue him. Londi received numerous complaints from neighbours and their security company about the behaviour of and safety concerns for the children. Her application to her employer to be allowed permission to take paid leave in order to care for her children and grandchild while their day care was closed was not successful. Taking unpaid leave would have left the family without an income so Londi had to continue going to work, leaving her children in dangerous circumstances. She eventually contracted COVID-19.
• Dennis, a four-year-old boy, has level 3 autism which means he requires daily one-on-one facilitation and support. This involves support in every aspect of his life, including toileting, bathing, eating and day-to-day executive functioning, impulsivity control and managing his anxiety. His mother, a member of the South African Police Services (SAPS), rendering essential services throughout the lockdown period, could no longer rely on childcare by the father after he had to return to work under lockdown Level 3. With specialised ECD not yet available for her son, she applied to be considered as a “COVID-19 vulnerable employee” under SAPS procedures, which would allow her to care for her son at home until ECD reopens. She awaits the outcome of this application.
South African workplaces and communities were ill-equipped for the impact of COVID-19 on childcare, home life and work for families with autistic persons. While our labour laws recognise family responsibilities and the need for reasonable accommodation of parents and caregivers of children with disabilities, during the COVID-19 pandemic, a lot of uncertainty arose as to whether this protection was still available to families. Government’s declaration of a national state of disaster does not suspend the exercise of our human rights as happens in a state of emergency. Instead, adjustments to how we operate are involved.
With government and workplace restrictions on freedom of movement, community living and the workplace, and the closure of ECDs, schools, and adult learning centres as well as restrictions on networks of support such as childcare by family members or friends, parents and caregivers of autistic persons were left with unconscionable decisions - not earning a living or leaving their children in potentially dangerous child care arrangements.
Fortunately, some workplaces developed protocols and procedures that take cognisance of this impact and adapted workplace rules to cater for employees with family responsibilities. Some communities have embraced the need for a “physically distant” ubuntu, which is a recognition of the dignity of all persons and the fact that some people are more harshly affected by COVID-19 restrictions than others.However, other communities have not done so, with dire consequences for families facing continued stigma and harassment from neighbours or unsafe childcare conditions for their children. While interventions by disabled persons organisations, such as Action in Autism, have assisted families such as those of Sizwe and Dennis by providing information on the effects of autism on childcare and daily living to employers and community members, an ad hoc approach is not sustainable.
The Employment Equity Act 55 of 1998, the Labour Relations Act 66 of 1995, the Promotion of Equality and Prohibition of Unfair Discrimination Act 4 of 2000 and their regulations and guidelines all provide legislative protection to affected families.
We call on workplaces and community members to take cognisance of these protections that recognise the family responsibility and need for reasonable accommodation of affected families at home, in communities and at work. Reasonable accommodation may involve adjustments to working conditions and schedules. Further, we call on them, where needed, to adapt rules and protocols and restore supportive relationships with affected families during the COVID-19 era. Such an approach will ensure the promotion of the human rights of autistic people to dignity and equality. Where employers and community members violate these rights, parents and caregivers may have to resort to legal remedies at the CCMA, Labour Courts and Equality Courts, sometimes approaching private attorneys or law clinics such as university law clinics or non-governmental law clinics including the Legal Resources Centre or Section27. Alternatively, recourse to the complaints mechanisms of the SA Human Rights Commission or Commission for Gender Equality is available.
Willene Holness is a senior lecturer in UKZN’s School of Law, an admitted attorney and a board member of the Shahumna Adult Business Transference Skills Centre (for Autistic adults) in Durban. However, she writes in her personal capacity.
Liza Aziz, a disability advocate, is the founder and chairperson of Action in Autism, a non-profit organisation that serves autistic persons and their families by providing support, learning, services and resources, including an Early Childhood Education and Adult Learning Centre based in Durban.
*The names of the adults and children in the article have been changed to protect their identities.