‘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 lively, giggling four-year-old daughter, now a source of joy rather than despair. Two years ago, she had considered ending her life, overwhelmed by the challenges of raising a child diagnosed with autism. At the time, Rachael was non-verbal, frequently bit, and struggled to remain seated, gradually draining Martha’s emotional reserves and leaving her in despair and anguish.

Martha’s neighbors in Malawi had blamed her for Rachael’s behavior, casting her aside and advising her to lock her daughter inside the house. With no sympathy and little knowledge of autism, the community viewed the condition as a personal failing. One day, Martha even filled a cup with poison, intending for Rachael to drink 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,” she recalls softly, looking down at her hands. Yet her heart refused to let her go through with it. “I changed my mind and cried so much,” she says, her voice trembling with emotion.

Two years later, the once-agonizing moment now seems distant, replaced by a warm, domestic scene where mother and daughter share affection. Rachael clambers onto Martha’s lap as they sit on the floor of their home in Mzuzu, northern Malawi. The girl laughs, hugging Martha’s face, while the 33-year-old prepares lunch, slicing vegetables to serve with nsima, a maize-based porridge. This remarkable transformation stems from the family’s access to specialized care, a lifeline that began during one of their frequent visits to Mzuzu Central Hospital, where Rachael was referred to Saint John of God—a nonprofit organization supporting children with disabilities.

Funded primarily by the Catholic Church, the organization offers community mental health services and operates a school for students with special educational needs. Martha and her husband also received counseling, helping them build a support system and connect with educators skilled in addressing Rachael’s challenges. Without such resources, many families in Malawi struggle in isolation, as the country has only two developmental pediatricians for its 22 million population and three consultant psychiatrists.

WHO data reveals that Rachael is among over 60 million individuals globally on the autism spectrum. Autism, or autism spectrum disorder, is a neurodevelopmental condition that impacts brain development, altering how individuals communicate, interact socially, and perceive their environment. This condition exists along a spectrum, manifesting uniquely in each person with varying levels of impact. Autistic people often exhibit traits such as intense concentration, robust memory, and creative problem-solving, yet in regions where mental health funding is minimal, only those with severe behavioral challenges are recognized, leading to stigma and prejudice.

In Malawi’s primary language, Chichewa, the term ‘autism’ is absent, often replaced by ‘ozelezeka,’ meaning mentally challenged, or ‘ofuntha,’ implying a troublemaker. Misconceptions abound, with some believing autism stems from witchcraft. At a community center near Martha’s home, religious leaders—Christian and Muslim—sit on green plastic chairs for an autism awareness event organized by Saint John of God. A vicar, adorned with a large gold