Appeal to Government: Concessions for Autistic People – The South African autism community unite for lockdown concessions
29 Apr 2020
Anonthe Cele, who is autistic, non-speaking and very active is cared for by his grandmother, Nana.
“Being indoors for the whole day is very exhausting because of Anonthe’s impulsive behaviour,” Nana explains. Nana has no fence around her house, so she is forced to keep him indoors. “Taking a walk is very important for Anonthe’s mental and physical benefit. A one-hour walk around my neighbourhood in the morning improves his mood and reduces his frustration. Actually, taking a walk helps us both.”
Many autistic people and their families, a highly vulnerable group, are currently in extreme distress under the COVID-19 enforced lockdown. As a diverse and complex neurodevelopmental disability, some people require high levels of support and accommodations on a daily basis.
Eight South African organisations that work at different levels of support and community activism for autistic people namely, Autism Western Cape, Action in Autism, Autism South Africa, Els for Autism, Autism Eastern Cape, Autism Limpopo, The Centre for Autism Research in Africa and Jozi4Autism, have banded together to appeal to government to consider the autism community during this restrictive time.
These organisations are requesting four primary concessions for autistic people.
1. The easing of lockdown restrictions to allow for daily walks and exercise for autistic individuals and a caregiver.
2. Access to facilitators and/or caregivers to support autistic individuals at home
3. Permission to divert funds for social relief and to participate in feeding schemes
4. Allowing for respite care centres to admit autistic people in distress, when their families can no longer cope.
These proposed measures will help to relieve the often heightened levels of stress and anxiety autistic people feel when routines are up-ended, when there is no calming or regulating outlet, and no support for the families that support them twenty-four hours a day. The intention would be to allow for these concessions to be followed within the spirit of the national lockdown, and thus respect all necessary rules.
Autism can offer wonderful insight and advantages such as systematic thinking or seeing detail and perspective that others would miss. However, it also poses great challenges with verbal and non-verbal communication, understanding social cues and rules, and a dysregulated and disordered sensory system. These difficulties require specific daily supports, accommodations, routines and activities to help mitigate the impact of these challenges on the autistic person’s mind, body and emotional well-being.
Lindiwe Ndlovu has two sons and a grandson who are autistic, and a daughter who has an intellectual disability. Lindiwe is a nurse, and as an essential services employee. She needs to be at work daily. During the lockdown period and in her absence due to the demands of her job, her children have had meltdowns, broken windows, and climbed an electric fence. Neighbours have reported her to the municipality and she has been accused of abuse, and yet she is simply struggling to survive without any assistance or help with her dependent children.
Many autistic people rely heavily on structure and routine, as well as on outdoor activities and exercise in order to regulate themselves. When opportunities for self-regulation are removed, stress increases for the autistic person, and this has a ripple-effect on their families and care-givers. A large percentage of autistic people have severe difficulties with spoken language, and when people cannot express their basic needs or experiences to others, life can be extremely isolating and lonely, further escalating frustration in a confined existence within the family group.
In other parts of the world, Governments have had to reconsider the restrictions for autism. On 14 April, Autism Eye reported a U-turn by the UK government on its limit on outdoor exercise. Autistic people and their families can now travel beyond their area, and leave their homes three times a day in order to access a quiet location or to exercise. “I think it is important because the truth is we have to move,” says Tariq Ahmed, a young non-speaking autistic man who uses a letter-board to communicate. For Michael and Gerard Pyoos, autistic brothers in their twenties, the outdoors is a life-line. Any exercise, even a walk on the beach, helps to relieve their stress and anxiety when they are feeling trapped.
“The added pressure of the current lockdown period poses significant challenges to autistic individuals and their families,” says Liza Aziz, the Chairperson and founding member of Action in Autism, whose adult son is autistic. “The current food shortages amongst poor families makes matters far worse, and may lead to desperate circumstances. On humanitarian and compassionate grounds, we therefore urgently request that Government hears the call of our community, and responds to the four concessions requested.”
The Autism organisations making the appeal have been overwhelmed by requests from families who are in desperate situations who are unable to support their physical and mental health needs under current conditions. Failure of Government to act fast to support autistic people will severely impact mental health concerns amongst the autistic community, and the families already in crisis.