'I didn’t even know what autism was': first-time mom's unexpected journey

When Tina Sisanda Bikitsha, a master's graduate in journalism and media studies at Rhodes University's 2025 autumn graduation, heard her son call her “mama” for the first time, six years after his birth, she broke down in tears.

It was “a special milestone that helped me embrace my unique parenting journey”, said Bikitsha.

Bikitsha, a first-time mom at the time of his birth in 2015, had a vision of raising her child in the usual way — milestones, birthday parties, school and eventually university. But when her son was diagnosed with autism spectrum disorder (ASD), that dream changed.

“I didn’t even know what autism was,” she admitted.

Bikitsha told TimesLIVE the way the doctor broke the news was cold — no comfort; just a warning not to trust everything she read online.

That warning came too late. Bikitsha went home, waited for her son to fall asleep and searched — and what she found terrified her. Alone, overwhelmed and without her husband, who was out of town at that time, she cried through the night.

“That marked the beginning of a life-changing journey, one that taught me much and made me stronger,” she said.

Another challenge was dealing with judgment from society. Bikitsha told TimesLIVE: “My son was still wearing nappies at the age of three, which is not unusual for children on the spectrum. I remember this time at the mall when a woman approached me and said, 'Ixhego elingaka elisanxiba inappy, unemali yodlala' [Such an old one still wears a nappy, you must have money to spare]. 

“On top of that, my son was obsessed with balloons, so everywhere we went we had to carry them because they comforted him. But again, I was often given strange looks by people who do not understand.”

Now, 10 years into navigating autism as a parent, Bikitsha is using her journey to highlight the emotional terrain many first-time mothers face when raising children with ASD. Her master's research explored “how Eastern Cape parents of children living with autism use social media for support”.

The diagnosis didn’t just change her child’s life, it reshaped her identity as a mother. “I had to unlearn everything I thought motherhood would be. I had to let go of timelines, of comparison. I had to focus on who my child is, not who I thought he should be.”

Bikitsha now advocates awareness and sensitivity, especially from health professionals and educators. She has completed autism courses, learnt to use Makaton sign language and guides her son through a world that doesn’t always understand him.

According to Rhodes, Bikitsha’s study sheds light on significant cracks in the support systems for families affected by ASD. She found numerous parents lack access to psychiatrists, reliable information and digital tools that could connect them to fundamental support networks.

She hopes her research encourages policymakers and organisations to invest in digital literacy, mental health services and inclusive health-care and education systems.

The department of health has urged families and communities to support individuals with ASD to thrive and reach their full potential and to refrain from discriminating against them.

According to the World Health Organisation, about one in every 100 children globally has autism. In South Africa, the department of health said local studies have found the prevalence of autism to be between 0.08% and 2%.

“This condition is mainly found to be more prevalent in males than females,” the department said.

Autism can be a lifelong condition, but according to the department, through appropriate and tailored support, children and adults with autism can make significant progress and live fulfilling lives.

TimesLIVE