Gugu Mkhize and her family are well known in KwaMakhutha, a township inland from the coastal town of Amanzimtoti, south of Durban.
They have lived there for 47 years, in the road named after her mom, Dudu Mkhize, a freedom fighter during the apartheid years. Their home was petrol bombed twice and Gugu Mkhize’s parents were shot and killed in front of her.
Mkhize is now fighting a different kind of war: prejudice against her autistic 11-year-old son, Tawanda.
Last month, ironically World Autism Month, she was forced to go to court because her neighbours had filed an interim protection order against her and Tawanda. They claimed the young boy had thrown stones at their property and accosted one of their children. The situation had come to a nasty head.
Mkhize, in her evidence before the court, said the neighbours had pushed her son, frequently told him to “voetsek”, called him “insane” and had screamed at Mkhize that she must “belt up her pig”.
Tawanda, she explained, has high support needs and is non-verbal but understands everything he hears. He responded intuitively to the verbal insults and taunting of the neighbours.
Mkhize pleaded with her neighbours to behave like adults and speak to her son with respect as a fellow human. She told them that as an educator and a mom, she would never treat any child in the manner they did. Fortunately the magistrate was on her side.
But Mkhize, a single mom, has no choice but to continue living in the neighbourhood with people who have no insight into her son’s condition. The situation in which she finds herself is far from unique.
Vilified by society
Lobby group and non-profit organisation Action in Autism – founded by Liza Aziz, who has an autistic child – cites examples of a child being slapped by a stranger at Durban’s popular People’s Park.
“Still another mother was forced to move out of her flat because of intolerant neighbours,” said Aziz. “A key barrier to inclusion is that society needs to learn about difference, they need to accept and embrace people with disability.”
The brutal truth is that autistic children, particularly those with high support needs, are vilified by society and have no real place in the education system. Even “special schools” don’t know how to support them.
When New Frame visited Action in Autism at its headquarters in a large renovated building in the Durban North area, which was once a school and then an army base, Aziz was chatting to the desperate mother of an autistic nine-year-old girl.
The special needs school she had attended for three years no longer wanted her there. Aziz was counselling the mom, giving her a list of schools she could approach and telling her which ones to avoid, and organising professional therapy for her at a local hospital, as the thick skin that parents of autistic children develop was wearing thin.
Her daughter, sensing her anxiety, was “playing up”, chewing on her clothes.
Hugs and high fives
Mkhize had a similar experience. After Tawanda was diagnosed, she travelled more than 100km each day to take him for lessons at Action in Autism’s early learning intervention centre, which was then housed in a rented building in Sydenham.
At its permanent home, the centre now accommodates about 32 children between the ages of three and six. There is a long waiting list. Each classroom has about eight children with one educator and three caregivers. They are potty trained and given expert therapy. Hugs and high fives are part of the learning experience.
Tawanda thrived there and was accepted into a special needs school. But a year later, he was kicked out because “he was not making any progress”.
Since then, he has remained at home, where he is cared for by Mkhize’s sister, a beautician, and brother, a security guard in training, while she works.
It is this “separation” policy and societal stigma that riles Aziz.
She asks rhetorically how it will ever be possible to integrate autistic children into society when they are excluded from schools, and how society will ever accept them if they are hidden from sight.
“I have heard parents of non-autistic children saying they don’t want autistic children in the classroom … like it’s something you can catch.
“People are fearful of what is different, of what they see as strange behaviour. My own son, who is 19, is non-verbal. He communicates with an iPad. He is desperate to communicate but can get frustrated when he can’t. Sometimes he bites himself, but that is because he is experiencing a sensory overload or he is in pain. He wants to let me know he is unhappy.”
Aziz’s journey began when an educational psychologist told her that her son “cannot be educated”.
“I was incensed. I began campaigning. A local newspaper picked up the story and the next thing I was holding a meeting in a backyard. Twenty-two parents pitched up. I organised for then education MEC [member of the executive council] Ina Cronje to attend another meeting. This time, 200 parents pitched up. So many children were out of school.”
In 2011, the education department signed off an autism action plan, promising R200 000 in funding to every special needs school in the province to cater for children with autism, and specifically those with high support needs.
By then, Action against Autism was already running the early learning centre in rented premises. Aziz lobbied hard and the government gave her the old school building, while private funders assisted with the renovations.
Apart from the preschool, it provides important counselling services for parents, helping empower them through knowledge of their rights. Action in Autism also runs skills transference workshops for parents, educators – about 600 teachers have attended so far – and therapists.
Aziz said special needs schools are “picking and choosing” which learners they want. “They take those with low support needs, who should be in mainstream schools anyway, and exclude those with high support needs.
“Special schools are also packed with children who shouldn’t be there. For example, children using wheelchairs. When did you ever see a child in a wheelchair at a mainstream school? Understanding disability should be part of classroom learning.”
Adults with autism
Aziz continues to chip away at what sometimes seems to be an uphill battle. She is running awareness and information drives in KwaMakhutha, KwaMashu and the Embo district. And the organisation is expanding its focus to adult education and skills transfer, hoping to fast-track those who are able into the labour market.
“Very few autistic people are employed. I know of three. One works for us, one who has three degrees is a librarian and another works for Woolworths.”
A newly constructed building at Action in Autism will accommodate two streams of adult learners. One stream will do a two-year “embedded skills transfer” course, with the aim of attendees finding employment in the open market. The other stream – those with high support needs – will run on-site businesses: industry and craft, catering, and hydroponics and indigenous gardening.
An on-site coffee shop and retail store will bring in the public and sales will help the financial viability of the entire project.
A residential facility is also on the cards.
Most importantly, Aziz said, it will be a model of integration and inclusion. “It will be a space for our people and one where people can come to learn about our world. We want to change lives.”