‘I adore her now’: Mother learns to cope with child’s autism in a country with little help
‘I Adore Her Now’: A Mother’s Journey Through Autism in Malawi
Martha Ongwane now gazes with affection at her energetic, smiling four-year-old daughter, Rachael. Two years ago, she stood on the verge of despair, wishing to end her child’s life. At the time, Rachael’s behavior—non-verbal, prone to biting, and restless—had left Martha feeling overwhelmed and isolated. She was shunned by her neighbors in Malawi, who blamed her for Rachael’s condition. The community told her to confine her daughter indoors, offering no comfort or insight into autism.
“I told myself it would be better if she died because that would mean she would rest and the problems we faced would finally end,” Martha recalls. Yet her heart wavered, and she wept uncontrollably, choosing life over despair.
Today, the same mother and daughter share a tender, everyday moment. In their home near Mzuzu, northern Malawi, Rachael climbs onto Martha’s lap as she prepares nsima, a maize-based porridge, for lunch. Her laughter fills the room, a stark contrast to the grief that once haunted the family. This shift is largely due to access to specialized care, which has transformed their lives.
A Lifeline for the Family
During a visit to Mzuzu Central Hospital, Rachael was connected to Saint John of God, a Catholic-led organization supporting children with disabilities. It offers community-based mental health services and a school tailored for those with special educational needs. For Martha and her husband, the support provided through counseling and guidance has been vital. They’ve found a network of educators and caregivers who help manage Rachael’s challenges, turning their isolation into hope.
Understanding Autism in Malawi
According to the World Health Organization, over 60 million people globally live with autism, a neurodevelopmental condition that affects communication, social interaction, and perception. While the disorder varies in severity, many Malawians remain unaware of its true nature. The country has just two developmental pediatricians and three consultant psychiatrists for a population exceeding 22 million, leaving most families without adequate care.
In Chichewa, the primary language of Malawi, the term “autism” is not commonly used. Instead, it is often translated as “ozelezeka” (mentally challenged) or “ofuntha” (troublesome), perpetuating misconceptions. Some believe autism stems from witchcraft, a notion reinforced by community gatherings where religious leaders discuss the condition. A vicar, adorned with a gold cross, asserts that people can bewitch one another. Another man claims magic is used on pregnant women, leading to autism in children.
Christopher Mhone of Saint John of God acknowledges the widespread lack of understanding. “For a woman to reach a point where she feels she should kill her child—this shows how the nation has failed her,” he says. “Her burden became too heavy to bear, and she lost the strength to cope.” He emphasizes that most autism support comes from non-governmental groups, as government-run services are scarce. “Basic assessments and referrals are available at local clinics, but comprehensive care is still a dream for many,” he adds.
The journey from despair to acceptance has been profound for Martha and Rachael. What once seemed like an insurmountable struggle now reflects a bond that has grown stronger with time. Their story is a testament to the power of intervention and the importance of breaking down stigma, even in communities where autism is still poorly understood.
