‘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, cheerful four-year-old daughter, Rachael, with newfound affection. Two years ago, she stood on the verge of ending her daughter’s life, overwhelmed by the challenges of raising a child diagnosed with autism. Now, the pair share a quiet, affectionate moment at home in Mzuzu, northern Malawi, as Rachael plays beside her mother, laughter echoing through the room.

Rachael’s journey from a non-verbal, biting child who couldn’t sit still to her current vibrant self is a testament to the power of support. In the early days, Martha felt isolated, shunned by neighbors who blamed her for Rachael’s behavior. Without understanding of autism, the community urged her to lock her daughter away, leaving her desperate and despondent.

“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, voice trembling. “My heart didn’t let me. I changed my mind and cried so much.”

Access to expert care transformed their lives. During a visit to Mzuzu Central Hospital, Rachael was referred to Saint John of God, a Catholic-run organization offering services for disabled children. It provides a school for those with special educational needs and community-based mental health support, becoming a lifeline for Martha and her husband. They also received counseling, which helped them build a network of understanding educators and advocates.

Autism, or autism spectrum disorder, is a neurodevelopmental condition that shapes how the brain develops, affecting communication, relationships, and perception of the world. It exists on a spectrum, manifesting differently in each person. While many autistic individuals display traits like intense focus or creative thinking, in regions where mental health care is overlooked, only those with severe behaviors are recognized, often leading to stigma.

In Malawi, the situation is stark. With over 22 million people, the country has just two developmental pediatricians and three consultant psychiatrists. Autism is not a commonly used term in Chichewa, the dominant language. Instead, it’s often translated as “ozelezeka,” meaning someone with a mental disability, or “ofuntha,” implying a troublesome child. Misconceptions abound, with some believing autism stems from witchcraft.

At a local community center, religious leaders—Christian and Muslim—gather to discuss autism during a Saint John of God awareness session. A vicar claims people can be bewitched, while another asserts magic is used on pregnant women to cause autism. Christopher Mhone, a representative of the organization, acknowledges the lack of understanding but emphasizes that practical interventions can shift perspectives.

“For a woman to reach a point where she feels she should kill her child—this shows how a nation has failed her,” Mhone says. “Her burden became unbearable, leaving her without the strength to cope.”

Despite progress, many families in Malawi still face limited resources. Most autism support comes from non-governmental groups, as government services remain scarce. While basic assessments are available at district clinics, specialized care is rare. Martha’s story highlights how access to knowledge and compassion can change a mother’s outlook—from despair to deep love.