A mother's journey with autism, why early diagnosis is key

When Mary Atieno gave birth to her daughter while still at the university, she expected the usual challenges of juggling lectures, exams and the demands of first-time motherhood.

What unfolded instead was a more complex journey, one that would eventually lead to a diagnosis of Autism Spectrum Disorder and a daily struggle to access support in a system she says is still catching up.

Atieno says her daughter was a calm baby, rarely crying and often content playing alone. At first, she saw this as a blessing, especially as she tried to balance academics with raising an infant.

“I thought I was lucky to have such a quiet child. She could sit with one toy for a long time and didn’t demand much attention,” she said.

But as months passed, subtle differences began to emerge. Her daughter did not respond to her name, avoided eye contact and showed little interest in the people around her.

By the time she turned one, she had not spoken a single word.

“People kept telling me she would talk eventually. But deep down, I felt something was not right,” Atieno said.

Her concerns intensified when her daughter turned two and still struggled with basic communication. She noted that while other children her age were forming simple sentences and engaging in play with peers, her daughter preferred isolation, often repeating the same actions and becoming distressed when routines were disrupted.

After months of uncertainty and multiple hospital visits, her daughter was eventually diagnosed with autism, bringing a mix of relief and fear.

“I cried when I first heard it. But at the same time, I finally understood what my child was going through,’’ she said.

Medical experts say such delayed diagnoses are common, particularly in settings where awareness and specialised services remain limited.

Paediatrician Dickens Lubanga from Bungoma Children’s Hospital says more cases are now being identified as awareness grows among both parents and professionals.

“Autism Spectrum Disorder is a developmental condition that begins early in life and affects how a child communicates, interacts socially and behaves,” Dr Lubanga said in an interview.

He explained that the condition is characterised by delayed speech, difficulty in social interaction and repetitive behaviour. Many children with autism prefer to play alone, avoid eye contact and may become anxious or agitated when their environment changes.

“These children often like routine. They may arrange objects in a particular way and become upset if that order is disrupted,” he said.

The term ‘spectrum’, he added, reflects the wide variation in how the condition presents. Some children have mild symptoms and can function independently, while others require significant support throughout their lives.

Dr Lubanga attributes most cases of autism to genetic factors, estimating that between 60 and 90 per cent are linked to inherited or spontaneous genetic changes.

Environmental influences, including maternal health conditions such as diabetes or hypertension, complications during pregnancy or birth, and exposure to toxins, may also contribute, though to a lesser extent.

“There is no single cause of autism, and there is no cure. But early intervention can make a significant difference,’’ he said.

Treatment focuses on managing symptoms and helping children develop essential skills. Speech therapy, occupational therapy and behavioural interventions are commonly used, alongside medication in some cases, to manage associated conditions such as hyperactivity or seizures.

For Atieno, accessing these services has been a constant challenge.

“As a student, I could not afford regular therapy. Even now, it is expensive, and there are not many facilities that offer specialised care,’’ she said.

Lubanga acknowledged the gaps in Kenya’s healthcare and education systems, particularly when it comes to supporting children with special needs.

“We have very few special schools and they are often underfunded and overcrowded. There are not enough trained teachers to give these children the attention they need,’’ he said.

Beyond the structural challenges, stigma is a major barrier. Atieno recalls being judged by strangers who did not understand her daughter’s behaviour.

“People think she is rude or that I am not raising her properly,’’ she said.

Lubanga added that such misconceptions can discourage parents from seeking help. He emphasised the need for greater public education, particularly during Autism Awareness Month, which is observed to promote understanding and acceptance of people living with autism.

“This is a time to create awareness and encourage inclusion. We need communities to support these children and their families, not isolate them,’’ he said.

He also urged parents not to hide children with developmental challenges but to seek professional help as early as possible.

“Early diagnosis allows us to start interventions that can help the child communicate, learn and develop basic life skills,” he said.