Silent struggles, loud love: The unseen challenges of parenting an autistic child

Moses Wainana, a seven-year-old boy with autism, is busy playing several feet away.

At first glance, it all seems perfectly normal. But a closer look reveals the child-like tendencies not aligned with his age, and his reluctance to make eye contact when his mother calls him.

“Sometimes I just look at my son and wonder why such an adorable child has to suffer so much at such a young age,” says the mother, Jane Wanjiru, her eyes welling up as she shares her story.

Throughout her pregnancy, Jane never entertained the thought that her unborn son could have autism spectrum disorder (ASD).

“I attended all my prenatal clinics religiously. My boyfriend was equally excited about the pregnancy, often fussing over my diet to ensure I ate healthily,” she recalls.

But three months after giving birth, Jane noticed something different. Moses wasn’t reacting to sudden sounds or bright lights like other babies. Even holding his head up seemed a struggle.

“Despite these observations, I brushed them off, convincing myself he was just a late bloomer. But the alarm bells grew louder when, at three years old, my son still struggled to walk,” she says quietly.

For William Mutiso, a single father to a 10-year-old autistic daughter, the reality of parenting a child with autism came like a tornado.

“Before my wife’s death, I knew deep down that my daughter had autism. But I was rarely home, always burying myself in work to meet our financial needs,” he says.

That life came crashing down when his wife died in a road accident. Suddenly, William found himself solely responsible for their daughter.

“Grappling with my wife’s death, it hit me hard that I was all my daughter had left. That’s when I realised I had to step up, not just financially but emotionally too,” he says.

In Kenya, official data on autism prevalence is lacking. But the Autism Society of Kenya (ASK), a parent-driven organisation founded in 2013, estimates the rate could be as high as 4 per cent, about one autistic child for every 25 children.

This figure is significantly higher than the global average of 1 in 160 children, according to 2022 data from the World Health Organisation.

Dr Ruth Nekesa, a pediatric specialist at Aga Khan Hospital, notes that while there is no way to detect autism during pregnancy, early signs often emerge in infancy.

“Symptoms include speech and walking delays, poor eye contact, learning difficulties, and repetitive behaviours like hand-flapping or rocking, commonly known as stimming,” Dr Nekesa explains.

She also challenges a common belief that autism is more prevalent in urban areas like Nairobi.

“On the contrary, cases in rural Kenya may be higher but often go unreported because parents are hesitant to accept their children’s diagnosis,” she says.

This stigma can have devastating consequences.

Paul Omollo, a father to an autistic son, was forced to relocate after his neighbours learned of his child’s condition.

“Before the rumours, I was highly respected in the community. I was even chosen to head our Nyumba Kumi initiative. But that all changed," he says.

"It started subtly, people ignoring my greetings or whispering as I passed. Then the other children began excluding my son from play. That’s when my wife and I decided to move from Kolwal to Kisumu."

For some parents, the emotional toll is equally crippling.

Kate Nyambura, a mother to a five-year-old autistic daughter, recalls her struggle to come to terms with her child’s diagnosis.

“After months of denial, reality hit me hard. I slipped into a dark mental space, and my mother’s constant ridicule about my ‘weakness’ only made it worse. Eventually, I suffered severe postpartum depression and had to be admitted for a year at Mathari Hospital,” she says.

According to Dr Martin Waweru, a psychologist at Oasis Mental Health Limited, the challenges for parents of autistic children often go beyond meeting their special needs.

“The mental turmoil these parents face is rarely discussed. Society expects them to accept their circumstances and cope alone. But that’s an unrealistic and unfair standard. A supportive community is their only lifeline,” he stresses.

As these parents navigate the complex journey of raising autistic children, they call for greater awareness, acceptance, and policies that support families affected by autism. For them, the fight is not just for their children’s well-being, but for their survival too.