‘I adore her now’: Mother learns to cope with child’s autism in a country with little help

Two years ago, Martha Ongwane nearly made the decision to end her daughter Rachael’s life. Today, she gazes with affection at her energetic, cheerful four-year-old, a stark contrast to the despair that once consumed her. At the time, Rachael’s behavior—non-verbal, biting, and hyperactive—had overwhelmed Martha, who felt responsible for her daughter’s struggles. In the rural community of Malawi, where support for neurodevelopmental conditions is scarce, she faced isolation and blame from neighbors.

Rachael’s diagnosis with autism had triggered a profound emotional crisis. Martha recalls pouring poison into a cup, intending for her daughter to drink it. “I told myself it would be better if she died because that would mean she would rest and our problems would end,” she says softly, staring at her hands. Yet, her heart wavered, and she wept, choosing to live rather than let go.

A lifeline through expert care

Martha’s turning point came when her family accessed resources at Mzuzu Central Hospital. There, Rachael was connected to Saint John of God, a Catholic-run initiative offering mental health services and education for children with special needs. The organization’s school became a vital resource, providing structured support that transformed their lives.

Alongside Rachael’s treatment, Martha and her husband received counseling, helping them build resilience. “Once isolated and shunned, we now have a network of educators and caregivers who understand her challenges,” Martha explains. This shift marked the beginning of a new chapter, filled with moments like the one in their home, where Rachael climbs onto her mother’s lap, giggling as they prepare lunch.

Cultural misconceptions and systemic gaps

Malawi’s autism support system is underdeveloped. With just two developmental paediatricians and three consultant psychiatrists for a population of over 22 million, many cases go unnoticed. The term “autism” is absent from the Chichewa language, often translated as “ozelezeka” (mentally challenged) or “ofuntha” (troublesome), reinforcing stigma. Many believe autism stems from witchcraft or curses, a perception that persists in rural areas.

At a community gathering near Martha’s home, religious leaders from Christian and Muslim backgrounds discuss autism. One man claims magic is used against pregnant women, causing the condition. Christopher Mhone of Saint John of God acknowledges these beliefs but highlights the importance of practical interventions. “When a mother feels she must kill her child, the nation has failed her,” he says. “Her burden became unbearable without proper care.”

According to the World Health Organization, over 60 million people globally live with autism. In Malawi, however, most rely on NGOs and charities for support. Basic mental health services are available at district levels, but government-run facilities remain limited. The journey for families like Martha’s underscores the urgent need for expanded awareness and resources in a country where understanding autism is still evolving.