Mom on a mission to end stigma attached to kids with autism

The mother of a 15-year-old boy born with autism is determined to end the stigma around the condition in South Africa. 

“I have received calls from all over the country, from mothers who are frustrated because they do not understand what is going on with their children, or how to deal with them,” said Yolande Nkosi.   

Autism is a mental condition, present from early childhood, characterised by great difficulty in communicating, forming relationships with other people and using language and abstract concepts.

The East London-based mother recalled the day she discovered that her son was autistic at the age of 3.

“I was alone and scared. I had to ask the doctor to explain it in Xhosa and when he did and said it was incurable, I almost lost it. I remember driving home, I was crying and almost got into a car accident because I was thinking, how I would explain it to his father?”

Nkosi said she read up about autism and with the assistance of professionals was able to accept and love her son unconditionally.   

“I was fortunate because at least I had access to social workers. There are people in areas who do not have such access but need the information. And sometimes when they do [have access to information], they are in denial,” she said.

Celebrating her son's sixth birthday celebration, Nkosi said the family bought him a small toy piano as a present, which he quickly mastered. 

“We sang Happy Birthday to him. Moments later, he was able to play it on the piano. We were all so shocked!” she said.

In an attempt to nurture JR’s potential, Nkosi and her husband decided to get him piano lessons - but the music tutor made it clear that he was unable to teach him due to his condition.    

Years later, the family decided to buy JR a piano because they could see how passionate he was about it.

Nkosi believes that autistic children have talents that need to be nurtured at an early age. “I can never overemphasise the importance for early intervention. Yes, children are different, but there is always one thing they enjoy doing and they must be supported,” she said.

Today JR's piano skills are well-known in his community and he often gets invited to perform at functions. 

“At first I was against the idea of him singing because he cannot pronounce some words properly, but I realised that he enjoys it and people embrace that. He even produces songs that only he can understand,” Nkosi told TimesLIVE.

JR currently features in an autism awareness advert being aired on various DStv channels

Nkosi said there is a need for more awareness campaigns in various areas, such as the events she has been hosting over the past two years, which use the themes "I am autistic but I can" and "Proudly out of the box". 

“The aim of these concerts has always been to inspire affected families, as well as change the stigma attached to our kids,” she said.

Given an opportunity, Nkosi said she would give up her municipal job anytime to become an ambassador or representative raising awareness about autism. “I am really passionate because this is a lived reality amongst many families. The education and motivation really goes a long way,” she said. 

She aspires to open a centre that will be a home to children with autism.

“Often our children are excluded, even from birthday parties, because they are seen as weird and crazy. It would be a relief for parents to know that their kids are at a place where they are understood, loved and appreciated and their talents are actually nurtured.”