‘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 brink of despair, nearly giving up on her daughter Rachael. Today, the same mother and child share a tender, everyday moment of connection in their home in Mzuzu, northern Malawi. Rachael, now four, clings to her mother’s lap as they prepare a meal of maize porridge, her laughter echoing through the room. This transformation, remarkable and heartening, is the result of a lifeline that has emerged for the family.
A Journey from Despair to Hope
Rachael, who was diagnosed with autism, once overwhelmed Martha with her non-verbal communication, aggressive biting, and restless behavior. At the time, the mother felt trapped, blaming herself for her daughter’s struggles. Neighbors in Malawi, where autism awareness remains low, shunned her, even suggesting she lock Rachael away. The lack of understanding and support left Martha desperate, to the point where she considered ending her daughter’s life.
“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 as she reflects on the decision. “But my heart didn’t let me. I changed my mind and cried so much.”
With access to expert care through Mzuzu Central Hospital, Rachael was connected to Saint John of God, a Catholic-led initiative offering mental health services and education for children with disabilities. The organisation’s school for those with special needs became a beacon of hope, providing Martha and her husband with the tools and support to navigate their daughter’s challenges.
Challenges in a Nation with Limited Resources
Autism, a neurodevelopmental condition that shapes how the brain develops, affects communication, relationships, and perception. It exists on a spectrum, with individuals displaying diverse traits—some may have intense focus or exceptional memory, while others face significant behavioral hurdles. However, in Malawi, where mental health spending is minimal, only those with severe symptoms are often noticed, fueling stigma and misunderstanding.
Global statistics from the World Health Organization indicate that Rachael is among over 60 million people worldwide living with autism. In her country, the situation is particularly dire: just two developmental paediatricians serve a population of more than 22 million, and only three consultant psychiatrists exist. The term “autism” is absent from Chichewa, Malawi’s most widely spoken language, and is frequently translated as “ozelezeka” (mentally challenged) or “ofuntha” (troublesome), perpetuating misconceptions.
Shifting Perceptions in the Community
At a community center near Martha’s home, religious leaders—both Christian and Muslim—gather to discuss autism. They once believed witchcraft caused the condition, but Saint John of God’s awareness sessions are slowly changing minds. A vicar, adorned with a prominent gold cross, admits that many still think magic can afflict unborn children. Yet, through these meetings, the organisation highlights practical interventions that help manage symptoms and foster acceptance.
Christopher Mhone, a representative of Saint John of God, reflects on Martha’s story with deep concern. “For a woman to reach a point where she feels like she should kill her child—this shows how a nation has failed her,” he says. “Her burden became unbearable, stripping her of the emotional strength to cope.” He emphasizes that most autism care in Malawi relies on NGOs and charities, as government services remain limited. While basic assessments and referrals are available at district clinics, dedicated support systems are still rare.
Martha’s journey from despair to devotion underscores the transformative power of accessible care. Her story is a testament to resilience, and a call for greater understanding in a country where autism is often misunderstood. For many families, the path to acceptance remains long, but for Martha and Rachael, it has already begun.
