‘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
Two years ago, Martha Ongwane stood at the edge of despair, contemplating the unthinkable. Her daughter Rachael, a four-year-old with autism, had become a source of immense frustration. Non-verbal, prone to biting, and constantly moving, Rachael’s behaviors had pushed Martha to the brink. At one point, she even considered poisoning her child, convinced it would end 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 barely above a whisper. “But my heart didn’t let me. I changed my mind and cried so much.”
Today, the same mother and daughter share a warm, unspoken bond. In their home in Mzuzu, northern Malawi, Rachael giggles while perched on her mother’s lap, her hands clasped around Martha’s face as she watches her prepare maize porridge for lunch. The shift in their relationship is remarkable, largely thanks to a breakthrough in access to specialized care.
Rachael’s journey began with a diagnosis of autism, a condition that once left Martha feeling isolated. Her neighbors in Malawi, where mental health resources are scarce, blamed her for her child’s behavior. “They told me to lock her inside,” she says. “There was no sympathy, only fear.”
A Lifeline in a Land of Limited Support
Martha’s turning point came during a visit to Mzuzu Central Hospital, where Rachael was referred to Saint John of God, a Catholic-run initiative offering services for children with developmental challenges. The organization provides not only mental health care but also an inclusive school for those with special needs. For Martha and her husband, the support was transformative.
Alongside therapy for Rachael, the couple received counseling that helped them rebuild their emotional resilience. “We found a network of people who understood our struggles,” Martha says. “Educators and caregivers who could guide us through this.”
Global Prevalence, Local Neglect
Autism, or autism spectrum disorder, affects over 60 million people worldwide. It is a neurodevelopmental condition that alters communication, social interaction, and perception. However, in countries like Malawi, where mental health funding is minimal, many cases go unnoticed. The nation has just two developmental pediatricians and three consultant psychiatrists for a population exceeding 22 million.
Language barriers further complicate understanding. The term “autism” does not exist in Chichewa, Malawi’s primary tongue. Instead, it is often translated as “ozelezeka,” meaning someone with a mental disability, or “ofuntha,” implying a troubled individual. These labels fuel misconceptions and stigma, which Christopher Mhone, a representative of Saint John of God, attributes to a broader societal failure.
Challenging Beliefs, One Conversation at a Time
In a modest community center near Martha’s home, religious leaders gather to discuss autism. Christian and Muslim elders share their perspectives, initially citing witchcraft as a cause. One participant claims magic can be cast on pregnant women, leading to autism. Yet, Mhone uses these sessions to challenge such notions, emphasizing the power of early intervention.
“For a woman to reach a point where she feels she should kill her child,” Mhone reflects, “as a nation, we have failed her. Her burden became unbearable, and she lost the strength to cope.” He highlights that most autism support in Malawi relies on NGOs and charities, as government services remain limited. Despite this, hope persists through small victories like Martha’s.
