Struggle of raising autistic children

“As a parent raising an autistic child, you must be prepared to have a very lonely life.”

This is how Lesedi Lekala, a 35-year-old mother of a 10-year-old autistic boy, sees her life, which she says is a journey filled with sacrifice and isolation. That is because her life has become centred entirely around her son’s unique needs.

Lekala recalls noticing something different when her son was just three years old.  He struggled to communicate, often seemed angry, and cried frequently. “That’s when I finally took him to the doctor,” she said.

The diagnosis threw her.

She had to learn to raise a child who functions differently from other children, and understanding that   everyday activities like birthday parties and outings are nearly impossible. “I can’t even throw him a birthday party because he hates noise.

“Two hours in a restaurant is more than enough before people start giving me those judgmental looks, questioning my parenting,” she said.

Lesedi describes the emotional toll of constantly having to justify her son’s behaviour in public. “It’s exhausting. I stopped going out with friends or taking him to restaurants because he’s always on the move and would hit people’s tables. People don’t understand, and it gets very lonely.” 

Though her son is 10, she said his developmental age is closer to that of a five-year-old. “People see a big child and immediately think I’m failing to discipline him. They don’t understand autism,” she said.

The challenges of raising an autistic child have made Lekala afraid of having another child.

“I don’t think I’m strong enough. What if I give birth to another autistic child? I need therapy before I even consider it.” 

Juliet Carter, national director of Autism SA, said no data is collected on the prevalence of autism in SA.

“Some global estimates suggest around 1-2% of the population may be autistic,” Carter said. “The World Health Organisation states a global average of 1 in 100, while in the US, the CDC [Centers for Disease Control and Prevention] reports a figure of 1 in 36.”

However, Carter emphasised that such statistics can’t be applied universally.

“The American numbers don’t reflect the South African reality. We need our own data to understand the scale of autism here.” 

Elizah Ramokgopa, 49, the mother to a  17-year-old autistic teen, said her son was misdiagnosed for years.

“Even when I knew something wasn’t right, doctors said it was just a speech delay,” she recalled.  “I spent R3,000 on consultations before finally going to [the Chris Hani] Baragwanath Academic Hospital, where he was diagnosed at the age of four.” 

It took another year before her son could start school because of the lengthy documentation process. He eventually enrolled at the Johannesburg School of Autism, where he is now pursuing vocational training.

“He loves being in the kitchen. But a messy space irritates him,” Ramokgopa said.

As her son approaches adulthood, she worries about what lies ahead. 

Once he turns 21, he’ll have to leave the school. Then I’ll be on my own again.” 

According to Carter, SA doesn’t have enough autism-specific schools to meet the growing demand.

“In some provinces, there isn’t even a single dedicated school for autistic learners,” she said. “This lack of specialised education leaves many children without the support they need to reach their full potential.” 

Ramokgopa, like Lekala, also experiences a lonely existence due to her autistic son. He can’t tolerate loud noises and will start screaming, resulting in everyone having to stop talking until his meltdown ends.

She said there are instances where he is aggressive when playing with other children, and that becomes frightening for them, and they cry and complain that he hits them.

“Relatives stopped inviting us to birthday parties. They didn’t understand his behaviour, so they just excluded us,” she said.

Both mothers highlighted how deeply isolating the journey of raising an autistic child can be – not just because of the condition itself, but because of how society responds. 

Lekala’s wish is simple: “I just want people to understand that I’m not failing as a parent. I’m doing my best to raise my child in a world that often doesn’t make space for him.”