‘I adore her now’: Mother learns to cope with child’s autism in a country with little help
‘I adore her now’: Mother learns to cope with child’s autism in a country with little help
Martha Ongwane now gazes affectionately at her lively, giggling daughter, a stark contrast to the despair she once felt. Two years ago, the same child—Rachael—had been non-verbal, prone to biting, and restless, overwhelming Martha to the point of contemplating ending her life.
Back then, the mother’s emotional state had reached a breaking point. She had considered poisoning Rachael, believing it would resolve their struggles. “I told myself it would be better if she died because that would mean she would rest and that would be the end of our problems,” Martha recalls, her voice trembling as she reflects on the moment. Yet, her heart held on, and she eventually abandoned the idea, sobbing with relief.
Today, their bond is unbreakable. In their home in Mzuzu, northern Malawi, Rachael clings to Martha’s lap as she helps prepare a meal of maize porridge, the simple act of cutting vegetables a testament to their newfound harmony. The shift in their relationship is attributed to the support they received from Saint John of God, a charitable organization that provides care for children with developmental challenges.
Located in Mzuzu Central Hospital, the organization has become a lifeline for families like Martha’s. It offers community-based mental health services and an inclusive school for children with special educational needs. Through these resources, Martha and her husband gained access to counseling, which helped them navigate Rachael’s unique needs. Educators and advocates now guide them, replacing the isolation and stigma they once faced.
A Global Challenge with Local Struggles
According to the World Health Organization, over 60 million people worldwide are on the autism spectrum. This neurodevelopmental condition affects communication, social interaction, and perception, manifesting differently in each individual. While some may exhibit traits like intense focus or creative thinking, many are overlooked in regions where mental health care is underfunded.
In Malawi, for instance, the support system is severely limited. There are just two developmental pediatricians for a population exceeding 22 million, and only three consultant psychiatrists. The term “autism” is rarely used in Chichewa, the country’s primary language. Instead, it is often translated as “ozelezeka,” meaning mentally challenged, or “ofuntha,” implying a troublesome nature. Misconceptions abound, with some believing autism stems from witchcraft or curses.
Shifting Minds in the Community
At a nearby community center, religious leaders gather on green plastic chairs to learn about autism. This session, organized by Saint John of God, aims to dispel myths. A vicar, adorned with a gold cross, acknowledges the prevalence of belief in witchcraft. Another man suggests that magic could be cast on pregnant women, leading to autism in children. Despite these traditional views, the organization works to reframe autism as a manageable condition.
Christopher Mhone, a representative of Saint John of God, emphasizes the emotional toll on families. “For a woman to feel she should kill her child—this shows the nation has failed her,” he says, highlighting how lack of support can push parents to the brink. He stresses that practical interventions, like those offered by the hospital, are critical in helping families like Martha’s. Yet, he admits that most care relies on non-governmental efforts, as government services remain scarce.