‘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 with affection at her lively, giggling four-year-old daughter, unable to grasp that just two years ago she had considered ending her life. Rachael, who is non-verbal, prone to biting, and unable to remain seated, had been diagnosed with autism. At the time, the condition overwhelmed Martha, leaving her emotionally drained and on the verge of despair. Her neighbors in Malawi, an east African nation, had blamed her for Rachael’s behavior, isolating her and even urging her to confine the child. Sympathy was scarce, and autism was often misunderstood, with no clear path to support.
Martha recalls a moment of profound turmoil. “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,” she says softly, tracing her fingers over her hands. Yet, her heart refused to let her go through with it. After crying uncontrollably, she changed her mind, marking the beginning of a journey toward healing.
Hope through expert care
Two years later, the contrast is striking. Rachael now clings to her mother’s lap as they sit on the floor of their home in Mzuzu, northern Malawi. The girl laughs, wrapping her arms around Martha’s face, while the 33-year-old prepares vegetables to serve with nsima, a maize-based porridge, for lunch. This transformation is largely due to the family’s access to specialized care, a rarity in their country.
Rachael’s path to improvement began during a visit to Mzuzu Central Hospital, where she was referred to Saint John of God, an organization aiding children with disabilities. Funded primarily by the Catholic Church, it offers community-based mental health services and a school for those with special educational needs. For Martha and her husband, the support extended beyond medical care—they also received counseling, which helped them build a network of understanding and guidance.
A nation struggling with autism awareness
Yet, many families in Malawi lack such resources. According to World Health Organization data, Rachael is part of a global population exceeding 60 million with autism spectrum disorder. This condition, a neurodevelopmental disability, affects how the brain develops, altering communication, social interaction, and perception of the world. Its impact varies, with some individuals displaying traits like intense focus, strong memory, or creative thinking.
Despite these characteristics, autism often goes unnoticed in regions where mental health funding is minimal. In Malawi, for instance, only two developmental pediatricians and three consultant psychiatrists serve a population of over 22 million. The term “autism” is not widely known in Chichewa, the country’s primary language. It is frequently translated as “ozelezeka,” meaning mentally challenged, or “ofuntha,” implying someone who causes trouble. Misconceptions abound, with some believing autism stems from witchcraft.
Shifting perceptions in the community
At a nearby community center, religious leaders—Christian and Muslim—gather on green plastic chairs for an autism awareness session led by Saint John of God. Participants initially cite witchcraft as a cause, with one man claiming magic is used on pregnant women to trigger autism. A vicar, wearing a gold cross, adds that people often know of each other’s bewitchment.
Christopher Mhone, a representative from Saint John of God, acknowledges the lack of understanding but aims to reshape views. “For a woman to reach a point where she feels she should kill her child—this shows we’ve failed her,” he explains. “Her burden became too heavy to carry alone, leaving her without the strength to cope.” He highlights the reliance on non-governmental organizations for autism support, as government services are limited. Basic assessments and referrals are available at district and primary care levels, but comprehensive care remains a distant dream for most.
