‘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 was on the verge of despair, her daughter Rachael’s autism having pushed her to the edge. Now, the once-non-verbal, biting, and hyperactive four-year-old is a source of joy, and Martha gazes at her lively, giggling daughter with newfound affection. The journey from despair to acceptance has been transformative, thanks to access to expert care that changed everything.
Rachael, who was diagnosed with autism, had once overwhelmed Martha to the point of contemplating a drastic action. “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 soft as she looks down at her hands. Yet, her heart wavered, and she eventually decided to keep her daughter, crying endlessly before finding solace in support.
A lifeline in Mzuzu
Martha and her husband now find comfort in a network of educators and counselors, thanks to their connection with Saint John of God, a Malawian organization aiding disabled children. Based in Mzuzu Central Hospital, the group provides both mental health services and a school for children with special educational needs, offering a critical resource in a country where autism is often overlooked.
While basic mental health services are available at local clinics, the government-run infrastructure is limited. Only one public facility exists, and the nation struggles with a severe shortage of professionals, including two developmental pediatricians and three consultant psychiatrists, for a population exceeding 22 million.
Stigma and misperceptions
Cultural misunderstandings compound the challenges. In Malawi, autism is not a widely recognized term; it is often translated as “ozelezeka,” implying mental disability, or “ofuntha,” suggesting a child is problematic. Many in the community believe autism stems from witchcraft, attributing it to curses cast during pregnancy.
At a recent awareness session, religious leaders from Christian and Muslim backgrounds gathered to discuss these beliefs. A vicar, adorned with a gold cross, affirmed that “everyone knows people can bewitch each other,” while another man claimed magic was used against expectant mothers, causing autism in children. Christopher Mhone, a representative from Saint John of God, acknowledges the widespread ignorance but uses these forums to challenge stereotypes, demonstrating how practical interventions can alleviate symptoms.
A nation’s failure
Mhone reflects on Martha’s experience, stating that “for a woman to reach a point where she feels like she should kill her child, as a nation we have failed her. Her burden became so unbearable that she lost the emotional and psychological strength to cope.” This highlights the systemic gaps in support, leaving many families without the resources to navigate autism’s complexities.
With over 60 million people globally on the autistic spectrum, the need for understanding and care is vast. In Malawi, however, only a handful of specialists exist, and the majority of support relies on the non-governmental sector. This is a stark contrast to the country’s rich cultural tapestry, where awareness efforts are slowly shifting perceptions and offering hope to those like Martha and Rachael.
