Cape Town - It was the last thing that they’d expected, a Cabinet Minister, who understood their pain and apprehension about their children’s future, not because she’s a woman, but because she’s a mother of a bipolar child.
As she shared her story, Social Development Minister Bathabile Dlamini, recalled how she’d kept quiet when an employee who was fighting the cause of autistic children in the department had talked to her about bipolar children.
“I can now disclose to her that I have a child with bipolar,” Minister Dlamini said.
She was speaking in Gugulethu at a Dialogue with Parents of Children with Autism. Arranged by her department, Friday’s gathering, brought together for the first time the department, parents and children who have autism.
Autism is a developmental disorder which is frequently noticeable at the age of 18 months when speech defects suddenly appear in some youngsters. South Africans who have relatives affected by the disorder include musician Hugh Masekela, whose brother suffers from autism, and professional golfer Ernie Else whose son lives with autism.
Many doctors don’t fully understand the disorder. Owing to ignorance some autism people had been misdiagnosed and confined to mental institution for years.
Autism comes with challenges to social interaction, speech impediments, which could include being mute, and sensory disintegration.
Autism affects children differently, according to Dr Louise Lindenberg, a medical professional who works in this field. “Not one child is the same as the next. It looks different in every child.”
Accordingly it was often difficult to diagnose autism, although early diagnosis was important. “We need to create awareness of the disorder.” Sedative medication is the only prescription registered for the treatment. Special diets were also beneficial.
“Effective diagnosis is important. It’s a very difficult area to work in. Children need effective treatment. They can’t be sedated all the time. We need medical aids to be involved so that autism can be declared a chronic disease,” Lindenberg said.
Some of the parents present spoke about their fears of their children being sexually molested, high medical costs, and the absence of special schools (South Africa only has seven special schools, six of which are state-run centres).
Parents not only fret about their autistic children when they are toddlers, but worry about them through their teenage and adults years, and quietly hope that that do not predecease these children.
Teachers at normal schools were unable to teach autistic children, who could end up being sent to spend their school day a classroom. In some cases parents tie their autistic children to either a chair or a tree. In other cases they lock them up in backyard rooms.
Engineer Zwanada Ramadua and his wife had two children and were living a good life. But their third child was different.
“We told the doctors that this child wasn’t normal. She was breaking things at home. My wife had to stop her job. Life was not so easy,” he said.
But he only realized the extent of the disorder after his wife had died in 2009. Once for instance his daughter used a toilet at a restaurant. She came out of the restroom naked. Her behaviour often made him “a laughing stock”.
Siphokazi Mtshotshisa, founder of the non-governmental organization Moonlight Foundation for Autism, is the mother of two boys.
Moonlight Foundation, an advocacy group, was founded “as a result of searching for years for an institution that could meet my son’s needs”.
Recently the Foundation went out on an Autism Awareness Campaign. It has held an event in Soweto and another one in Alexander township in Gauteng. Both were well attended. Parents who attended didn’t know what autism was. One said: “I thought my child was possessed by a demon.”
Afterwards Minister Dlamini said the Government has programmes for autistic children. “We have schools but they’re not enough. It’s most important for parents, communities and children that this disease is identified at an early age.
“It’s a disorder that we are not used to. We want to mobilize the community as a whole not to hide the children with autism. We are saying to our people it’s not wrong to have kids with autism.”
Up to now Government has not officially defined a disability. The Department of Health is working on such a definition. “That definition will help us to bring in new things,” Minister Dlamini said. – SAnews.gov.za
