Voices of autism: Parents speak out on gaps in care and inclusion

As they say, parenting does not come with a manual. It is often a journey of trial and error. However, parents raising autistic children face unique challenges ranging from victimisation to stigma, among others.

For Judy Ligaga, those struggles became the foundation of purpose. Out of personal pain and resilience, she founded the Faraja Initiative, an organisation dedicated to supporting children with neurodevelopmental disorders, particularly autism, and the families navigating similar journeys.

Her mission was born from lived experience, the exhausting search for affordable therapy, the struggle to find inclusive schools, and the harsh reality of societal stigma surrounding neurodiversity. “Many parents raising autistic children suffer quietly and in isolation,” Ligaga says. “I wanted to bridge that gap and remind them that they matter, that they are not alone.”

A pastor at Trinity Church in Nakuru County, Ligaga, never imagined that her life would one day revolve around autism advocacy.  The diagnosis of her second-born child forced her into a world she had neither prepared for nor understood.

Only a few members of her congregation know the emotional weight she carries beyond the church walls. “My story mirrors what many parents go through every day,” she says. “Some women are abandoned to raise their children alone when autism enters the family. I count myself fortunate that my husband stood by me.”

Her motherhood journey began ordinarily. She attended all prenatal clinics and later delivered her daughter, Lily, through a caesarean section. Born weighing 2.7 kilogrammes, Lily appeared to grow and develop like any other child during her early years. But when Lily turned two-and-a-half years old, subtle changes began to emerge, moments that would slowly reshape Ligaga’s understanding of motherhood, faith, and resilience.

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Turn of events

Her daughter began experiencing twitching episodes, which the family initially considered normal. Even her elder daughter, now 13, occasionally joked about it.

During a conversation with a doctor friend, Ligaga mentioned the twitching and was advised to seek medical evaluation, though she initially dismissed the concern. “To us, it seemed normal. One day, while accompanying my husband to the hospital, I mentioned it to a doctor, who immediately called a paediatrician to examine her,” she recalled.

The family was referred to a neurologist, where an electroencephalogram (EEG) confirmed absence seizures, a condition involving brief lapses of consciousness.

Her daughter was placed on medication, and doctors later discovered what Ligaga described as a “lump” in the brain requiring surgery. It took her a year to accept the decision. On April 1, 2020, the child underwent surgery and recovered successfully, but later gradually lost her speech.

A subsequent diagnosis confirmed autism. The child began displaying sensory behaviours such as smelling food before eating and seeking close physical contact, signs Ligaga later understood as sensory regulation needs. “My pregnancy was normal. When I was told she had autism, I went into denial, trying to understand what had happened,” she said.

Understanding that autism presents differently in every child helped her accept the diagnosis. Unlike many parents, she says her husband remained supportive throughout.

Raising an autistic child, she notes, remains difficult due to societal perceptions and the scarcity of occupational therapists. When her daughter turned three, she began attending therapy.

Challenges

Ligaga faced rejection from some relatives, while certain church members interpreted her daughter’s condition as a demonic attack. Faith, she says, helped her move from denial to acceptance.

Many parents struggle to understand their children’s fears due to limited access to behavioural therapists. “My daughter does not like supermarkets or enclosed spaces. We are navigating this with professional support,” she added.

School enrolment proved another hurdle. While inclusive schools promote social growth, special schools are expensive, and mainstream acceptance remains limited.

She urges society, especially churches, to create supportive spaces rather than stigmatise families.

Being able to send her daughter to school without anxiety has been one of her greatest milestones. “For four years, I stayed home with her. In 2023, she finally joined school and enjoys it. Letting her go without worry has been liberating,” she said.

Delayed milestone

David Karani, 37, shares a similar experience. His son Jabali, now 11, was born without complications and initially received a clean bill of health.

However, as the child grew, he became increasingly hyperactive.

At age three, Jabali had not begun speaking. Hoping social interaction would help, the family enrolled him in school.

Over time, they noticed behaviours such as head-banging and heightened sensitivity to sound. Medical examinations confirmed his hearing was normal, but doctors later diagnosed him with autism, news that deeply affected the family.

“Every hospital visit ended with recommendations to see a neurologist, but I resisted. Eventually, my son’s mother sought medical help without informing me, and that is when he was diagnosed,” Karani said.

The diagnosis strained their relationship, leading to separation and blame.

Acceptance took time, but with professional support, Jabali is now in school. Karani has since become an advocate, working to ensure autistic children have access to proper services.

Like Ligaga, he says medication remains expensive and calls on the government to provide anticonvulsant drugs and therapy free of charge.

Even dietary adjustments required for some  autistic children place financial strain on families.

“It is difficult for many parents. Some relatives still believe my son simply needs discipline. I have taken it upon myself to create awareness in my church, among relatives, and wherever I go,” Karani said.

He hopes to see policy reforms, increased public sensitisation, and financial support for caregivers, including flexible time to care for their children.

Medical perspective

During an earlier interview, paediatrician Dr Bernard Gwer explained that the exact cause of autism remains unclear but is linked to neurodevelopmental changes occurring before birth.

Autism is characterised by difficulties in social interaction, communication challenges, and repetitive behavioural patterns that can make adapting to change difficult.

“Early diagnosis is critical. Treatment mainly involves speech therapy, behavioural therapy, and occupational therapy,” Dr Gwer said.

He noted that autism can often be detected early with close developmental monitoring, although many cases become noticeable around the age of two. Common signs include limited eye contact, reduced responsiveness, and delayed communication.

According to Dr Gwer, autism cases are relatively common, and he diagnoses approximately one child every month.