‘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 gazes at her energetic, cheerful four-year-old daughter with affection, struggling to recall the anguish that once consumed her. Just two years prior, she had contemplated ending her daughter’s life, overwhelmed by Rachael’s non-verbal behavior, frequent biting, and inability to remain still. The child, diagnosed with autism, had become a source of despair for Martha, who faced isolation from her neighbors in Malawi. They accused her of causing Rachael’s challenges, urging her to confine the girl. Sympathy was scarce, and understanding of autism was minimal.
“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. “But my heart didn’t let me. I changed my mind and cried so much.”
Today, their home in Mzuzu, northern Malawi, echoes with laughter as Rachael climbs onto her mother’s lap, hugging her face while Martha prepares lunch. The meal consists of nsima, a maize-based porridge, served with cut vegetables. This shift from despair to affection is attributed to the family’s access to specialized care. During a visit to Mzuzu Central Hospital, Rachael was connected to Saint John of God, an organization offering mental health services and education for children with special needs. The support has transformed their lives.
Stigma and the Struggle for Understanding
Autism affects over 60 million people globally, according to World Health Organization data. It is a neurodevelopmental condition that alters communication, social interactions, and perception of the world. However, in Malawi, many remain unaware of its nature. The term “autism” is not recognized in Chichewa, the country’s primary language. Instead, it is often labeled as “ozelezeka” (mentally challenged) or “ofuntha” (troublesome). Misconceptions abound, with some attributing autism to witchcraft.
Changing Perceptions Through Awareness
At a community center near Martha’s home, religious leaders—both Christian and Muslim—gather on plastic chairs to discuss autism. The session, organized by Saint John of God, challenges beliefs linking autism to supernatural causes. One man asserts that magic can be used on expectant mothers, leading to autism in children. A vicar adds that people are aware of mutual bewitching. Christopher Mhone, a representative from the organization, notes that such sessions help reshape attitudes. “For a woman to reach a point where she feels like killing her child,” he says, “as a nation we have failed her. Her burden became unbearable, leaving her without the strength to cope.”
A System in Need of Support
Malawi’s mental health infrastructure is limited, with only two developmental pediatricians serving a population of over 22 million. Three consultant psychiatrists handle all cases. Most autism support comes from NGOs and charities, as government services are sparse. Basic assessments and referrals are available at district hospitals, but specialized care remains out of reach for many. Martha’s story is a rare exception, highlighting the potential for change when resources and education are accessible.