Low autism awareness leaves Ugandan children waiting longer for support

Advocates are urging parents, teachers and health workers to act on developmental concerns sooner as stigma, limited training and poor public awareness contribute to late autism identification in Uganda.

Low awareness of autism spectrum disorder is contributing to late identification and slower support for children in Uganda, according to autism advocate Nusurah Kasuke Nakawooya. Speaking on Salam TV’s health programme “Obulamu”, hosted by Mariam Businge, she urged parents and caregivers to watch children’s developmental progress closely and seek professional assessment when speech, social interaction or behaviour appears different from expected milestones.

Autism is a lifelong neurodevelopmental condition that affects communication, social interaction, learning and the way a person experiences the world. Health experts describe it as a spectrum because autistic people can have very different strengths, challenges and support needs. Signs can emerge in early childhood and may include delayed speech, limited response to a name, differences in eye contact, repetitive movements and unusual reactions to sound, light, texture or other sensations. But no single behaviour is enough on its own to confirm a diagnosis.

Nakawooya said many families notice concerns only after a child is already struggling to keep pace with peers. She said delayed speech is often the first clue parents recognise, while a lack of awareness can mean other children remain unidentified for longer, including in nursery and kindergarten settings. Her comments reflect wider concerns in Uganda, where health workers and advocates have also pointed to weak community understanding and gaps in professional training that contribute to missed or late diagnoses.

That concern is backed by research. A study published in a Sage journal on children in northern Uganda found a prevalence of 10.5 per 1,000 children aged two to nine, with many also living with other neurodevelopmental conditions. Separately, research in PLOS Mental Health has reported that health professionals in Uganda still face challenges in identifying and managing autism, helping to explain why detection rates remain low and why families often struggle to access help early.

Nakawooya also addressed common misunderstandings about causes, saying community discussions often turn to pregnancy, early childhood experiences and other possible explanations. But scientific evidence has not established a single cause of autism; rather, genetics and environmental influences can both play a role. She said parents should not wait for certainty before seeking help, and instead should turn to qualified professionals such as occupational therapists and neuropaediatricians if they suspect developmental differences. She also called for more training for teachers, stronger awareness campaigns and greater support for parents who delay assessment because of stigma. Research from Uganda has found that stigma and discrimination can cause some caregivers to hide autistic children from view, making early support even less likely.

Experts say timely assessment matters because autism does not go away, but appropriate support can improve communication, daily living and social skills. The World Health Organisation says developmental monitoring and early intervention can improve quality of life, even when diagnosis comes later than ideal. For parents, that means treating concerns seriously without jumping to conclusions: developmental delays do not automatically mean a child is autistic, but they do mean a child may need an assessment and tailored support.