Covid-19: Autism community pleads for relaxed lockdown rules
“I have no fence so I am forced to keep him indoors. Taking a walk is very important for his mental and physical benefit”
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 in 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 for 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 in 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, 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.
Aziz says that in other parts of the world, governments were making concessions for autism. In the UK, 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.
Permission was granted for this article to use real names and photo.
CORRECTION: An earlier version of the article misnamed Action in Autism.
I'm very much in support of this.
My 11-year-old daughter who has autism and conduct disorder has been exceptionally difficult, her routine has been disrupted and her behaviour has heightened.
We're struggling to cope and control the situation. She has now developed depression and wants to commit suicide because of having to be locked inside during this period. She tried to climb over a palisade fence that has spikes and electric fencing, she's screaming more and is becoming a danger to herself and others.
She hasn't been at school which used to be helpful for us and herself even though we still struggled, but not half as much as we do now. We as parents of the autistic community and children who have behavioural problems, are exhausted and at breaking point. Respite centres have closed and children are in distress.
Before lockdown I used to send my child to a boxing programme that worked with children with autism and behavioural problems, now I can't do that anymore. When she started to become volatile, we would take her out to parks but now I can't. She breaks my windows, doors, chairs, clothes are all torn up and things get thrown at us.
Please, we need the government to consider the autistic community and those with behavioural problems. Locking them up makes them more volatile and abusive towards others.
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