‘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 on the verge of ending her daughter Rachael’s life. Now, she clings to her with love, marveling at the girl’s lively laughter and boundless energy. The journey from despair to acceptance has been transformative, made possible by a crucial intervention in Malawi—a country where autism care remains scarce.
A Mother’s Desperation
Rachael, a non-verbal four-year-old, had once been a source of overwhelming stress for Martha. Her daughter’s biting behavior and inability to sit still led to feelings of helplessness and isolation. Neighbors in Malawi, where autism awareness is limited, blamed Martha, urging her to lock Rachael away. The stigma was profound, with few understanding the condition or how to support it.
“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. “But my heart didn’t let me. I changed my mind and cried so much.”
Turning Point and Support
Martha’s turning point came during a visit to Mzuzu Central Hospital. There, Rachael was connected to Saint John of God, a Catholic-run initiative offering care for children with disabilities. The organization provides both mental health services and a school for those with special educational needs, becoming a lifeline for the family. Alongside therapy for Rachael, Martha and her husband also received counseling, helping them build a network of support and understanding.
A Spectrum of Challenges
Autism, a neurodevelopmental disorder, affects how the brain develops, shaping communication, social interactions, and perception. It exists on a spectrum, impacting individuals in diverse ways. While some may exhibit traits like intense focus or creative thinking, many in Malawi remain unaware of these nuances. The country’s most spoken language, Chichewa, lacks a direct term for autism, often translating it as “ozelezeka” (mentally challenged) or “ofuntha” (troublesome). Misconceptions run deep, with some believing autism stems from witchcraft.
Changing Perceptions in Community
In a nearby community center, religious leaders from Christian and Muslim backgrounds gather to discuss autism. They begin with their beliefs, including the idea that magic can affect pregnant women, leading to autism. Christopher Mhone, a representative from Saint John of God, uses these sessions to challenge such views, emphasizing that practical support can ease the burden of the condition.
“For a woman to reach a point where she feels she should kill her child—this shows how a nation has failed her,” Mhone reflects. “Her struggle became so heavy that she couldn’t cope emotionally or psychologically without help.”
Despite progress, challenges persist. Malawi has only two developmental paediatricians and three psychiatrists for its 22 million people. Most autism care relies on NGOs and charities, with government services limited to basic assessments and referrals. Yet, for families like Martha’s, access to such resources has redefined their outlook on life and their child’s future.
