Mom moves from from grief to advocacy as she challenges perceptions of autism

Bongiwe Leepiloe, a mother of two, one of whom has autism, says she does not view her motherhood outside of autism.

Caring for a child who cannot always express themselves through words challenged her to learn a different language. Communication came through differe channels. She says she would never have opened up to this had she not been raising an autistic child.

She is raising a six-year-old son, Tlotlego Alpha Ledwaba, who has autism.

“I think autism is what actually gave me the biggest lessons into motherhood – it gave me more patience, more understanding and the ability to sit and listen,” she said.

Leepiloe says the journey began when Tlotlego was two years old. He experienced a regression; his development was going backwards instead of improving.

She explained that he was only left with two words – mom and dad.

“He went from saying his ABC’s and telling you what he wanted to not being able to say it, but pointing,” she said.

When he started losing his speech, Leepiloe took him to speech therapy because she thought it was a speech issue. She says that gradually his words were replaced by sounds, and he started humming.

Before this journey, Leepiloe did not know anything about autism.

“I told his speech therapist about it, and he referred him to a developmental paediatrician. We got the diagnosis when he was three,” said Leepiloe.

“Because it was my first child and I was not aware what autism is, it didn’t hit me that hard; it only hit me after I did my research on what autism is,” she added.

She said that no one she knew who was autistic looked like her child, and it left her frustrated as a parent. Leepiloe went into grief mode because she thought that the life she had expected for her child was now gone.

She was the first in her family to experience this, and no one else knew what it was, and she kept asking herself whether she had done anything wrong during her pregnancy.

Challenges faced

One of the challenges she faces while raising her child is that, because of his autism, he is a picky eater and she finds it difficult to introduce vitamins into his body.

“It’s very difficult for him to easily take everything and put it in his mouth,” she said.

She also mentioned that there were a limited number of schools that catered to children with autism in SA.

“A child with autism does not enrol in a special needs school because it might not cater for them, and they might regress.”

Tlotlego was eventually placed in a school, but she says she had to fight for him to get in.

“Our government says that education is a basic right of a child, and when a child is not going to school, they see that as a form of abuse – but where do we take them if there are not enough facilities?”

She mentioned that since she began her advocacy, the government had been trying to turn some schools into special needs schools that catered for people with autism.

Advocacy for invisible disability

Leepiloe said that the sooner society accepted that there were neurodivergent people, the sooner people like her could raise awareness over the issue.

“With us doing that, the stigma will fall,” she added. “Through acceptance, citizens create awareness and educate people that we need to advocate and introduce invisible disabilities more.”

She emphasised the need for more stories to be told, and for people with autism to be actively involved in shaping how their stories are told.

“Autism is different for each person, because you might find someone who is hyperactive and another person who does not have speech,” she said.

Not a Disability but Ability

Leepiloe noticed a significant gap in autism awareness in SA. As she began sharing her journey on social media, other parents started reaching out to her for advice and support.

“I didn’t have anyone to talk to because no one understood what it was,” she says. “So, I wanted to be that bridge for someone else, someone they could call and ask questions.”

In 2023, she started the Not a Disability but Ability non-profit organisation. The name came from her desire for her son to never see himself, or his autism, as a limitation, she said.

“I want him not to focus not on the disability, but on his ability,” Leepiloe said.

She added that disability only meant that one was going to need extra support in something, but it did not mean that they were limited in life.

The organisation has hosted workshops for therapists to give advice, and to provide tools to help parents and caregivers.

“I usually host these workshops in townships to bring awareness,” she said.

She also hosts events for parents to be celebrated because she believes they are doing all they can with what they have.

Leepiloe has started a podcast on YouTube and invites children with autism to share their stories.

Leepiloe’s goal is for people to know and understand autism, that it is not caused by vaccines, and that it is not a disease but a neurodevelopmental disorder, which means that the brain is just wired differently.

“When we accept a person for who they are, we can accept the disability they come with,” she says. DM