When you hear the word “autism”, what comes to mind?
For many in Zambia, and across southern Africa, autism is barely understood and often mislabelled. Some families don’t know it exists until a child struggles with speech or behaviour at school. Yet autism isn’t foreign; it’s here, and it’s quietly shaping lives in our communities.
A hospital study in Lusaka revealed something striking: 1.4% of children screened at the University Teaching Hospital showed signs of autism spectrum disorder (ASD). That’s roughly one in seventy – similar to global averages. The surprise isn’t the number but how invisible it is. These cases were identified only when parents sought help for developmental delays. Many more children in villages likely go undiagnosed, never receiving the understanding or support they deserve.
Among university students surveyed in Zambia, nearly eight in ten had never heard of autism. That silence reflects a health system and cultural narrative that avoids the topic. Families are told behaviours are spiritual attacks, stubbornness, or poor parenting. Some hide their children out of shame.
Silence Hurts
Autism is not an illness to “cure”; it’s a neurodevelopmental condition that changes how a person understands and interacts with the world. With speech therapy, structured learning, patience, and understanding, autistic children can thrive.
But most families in Zambia can’t access even a basic diagnosis. Across southern Africa, prevalence likely matches the 1% global figure, yet under-diagnosis and stigma make it seem rare. In the Western Cape, for example, only 0.08% of schoolchildren were recorded as autistic which is far below global trends. This isn’t because autism isn’t there, but because systems aren’t looking. Diagnostic tools don’t account for cultural differences. Professionals are scarce. Worldwide we face similar barriers, with autistic traits often misread as defiance or mental illness.
This isn’t just a data gap, it’s missed potential. Bright children are left out of learning. Adults are denied jobs because no one understood their needs. Parents carry shame for something they didn’t cause.
Link to Diabetes
Here’s where the conversation deepens. Research shows a quiet connection between autism and diabetes, another topic rarely discussed in Zambia.
• During pregnancy: Women with type 1, type 2, or gestational diabetes are more likely (25–42%) to have a child diagnosed with autism. Diabetes doesn’t directly “cause” autism, but high blood sugar and inflammation during pregnancy can affect brain development.
• Later in life: Autistic people are more likely to develop diabetes (about 57% higher overall), with more than twice the risk specifically for type 2. This may be due to immune issues, medication side effects, and difficulties accessing healthy food, exercise, and healthcare.
Yet in Zambia and most African settings, clinics treat autism and diabetes as separate worlds. Pregnant women with diabetes rarely hear about developmental risks. Autistic children aren’t routinely screened for diabetes. These gaps leave families unaware and unprepared.
Breaking Silence
We cannot change what we don’t acknowledge. Here’s where we start:
• Name it: Say “autism” out loud : in churches, schools, health talks. Let’s stop blaming witchcraft or poor parenting.
• Learn the signs: Delayed speech, sensory sensitivities, and challenges with social cues are not disobedience. Early support transforms futures.
• Fight stigma: Autistic children are not broken. They need tools and acceptance to navigate a world not built for their wiring.
• Screen better: Health workers should screen children, especially those born to diabetic mothers, for developmental delays early.
• Push for inclusion: From Ministry policies to teacher training, Zambia must invest in autism and diabetes programmes like it does for malaria and HIV.
This isn’t only a medical issue; it’s a human rights imperative. Autism and diabetes don’t discriminate, but systemic neglect does. When healthcare systems lack awareness and resources, families who need support the most, often fall through the cracks. Add poverty, race, or rural isolation, and the gap between a child’s needs and available help becomes a canyon.
A Vision for Change
Change is possible. Across Africa, small initiatives are emerging. NGOs in South Africa and Kenya are forming support networks, while parents are using online spaces to share tools and encouragement. Each conversation plants seeds of awareness.
Imagine Zambia leading this transformation:
• Rural health workers trained to recognise autism and diabetes early.
• School aides helping autistic children thrive in class.
• Antenatal programmes teaching diabetic mothers about developmental risks.
• Wellness clinics offering joint support for autism and diabetes.
Picture a child with both autism and diabetes walking into a clinic and finding understanding instead of confusion. This is not a far-fetched dream, it’s a choice we can make with policy, funding, and community action.
Autism is not a curse. Diabetes is not a life sentence. With knowledge and compassion, both can be managed. But silence is dangerous: it isolates families, robs children of futures, and widens health gaps we already struggle to close.
As someone living with a chronic condition, I know how lonely it feels when a system doesn’t see you. We cannot let thousands of autistic children and adults alike, remain unseen. Nor can we ignore the hidden ties to diabetes that may shape future generations.
I’m asking you to join me:
• Share this conversation with your family and community.
• If you’re a parent, request developmental screening at clinics.
• Policymakers, prioritise autism and diabetes awareness in national health plans.
• The diaspora can bring back more than remittances…bring knowledge, tools, and advocacy.
Autism is not foreign. Together, we can ensure that no one faces autism, or its link to diabetes, in the dark.
(Kaajal Vaghela is a wellness entrepreneur, sportswear designer, and diabetes health consultant with over three decades of lived experience managing Type 1 diabetes. Having previously served as the chairperson of the Lusaka branch of the Diabetes Association of Zambia, she remains a passionate advocate for breaking down myths and building awareness about diabetes. For more information, check out: www.kaajalvaghela.com and for any feedback: [email protected])
