South Africa’s autism community is pleading with the government for urgent lockdown concessions to restore much needed “routine” and access to support services.
In letters written this week to several government ministers and heads, Action against Autism, Autism Western Cape, Autism South Africa, Els for Autism, Autism Eastern Cape, Autism Limpopo, The Centre for Autism Research in Africa and Jozi4Autism are asking for: The easing of lockdown restrictions to allow daily walks and exercise for autistic people and a caregiver; access to facilitators and/or caregivers to give home support; funds for social relief and to participate in feeding schemes; and the re-opening of care centres to admit autistic people in distress when their families can no longer cope.
The eight organisations say they have been overwhelmed by requests from families in desperate situations.
“Failure of government to act fast to support autistic people will severely impact mental health concerns among the autistic community, and the families already in crisis,” says Liza Aziz, Action Against Autism chairperson and founding member. She too has an adult son who is autistic.
Aziz cites the case of 12-year-old Anonthe Cele, who is autistic and does not speak but is “very active”. He is cared for by his grandmother Nana who says: “Being indoors for the whole day is very exhausting because of Anonthe’s impulsive behaviour. I have no fence so I am forced to keep him indoors. Taking a walk is very important for his mental and physical benefit.”
She added that a one-hour walk around the neighbourhood would improve his mood and reduce his frustration.
Another parent, Lindiwe Ndlovu, has two sons and a grandson who are all autistic. Her 24-year-old daughter also has an intellectual disability but helps to care for the younger ones.
Ndlovu is a nurse and has to work a lot. She desperately needs help.
In her absence, the children have had “meltdowns”, broken windows and climbed onto an electric fence. Neighbours have reported her to the municipality and accused her of abuse. But Aziz says that Ndlovo is simply struggling to survive without any assistance or help with her dependent children.
“Many autistic people and their families are currently in extreme distress under the Covid-19 lockdown. Many rely heavily on structure and routine, as well as on outdoor activities and exercise in order to regulate themselves,” she says.
“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,” she says.