Community perceptions of the causes of autism and help-seeking responses : a multi-site qualitative study across northern Uganda

Vincent, Jonathan and Kajjumba, Diana and Amone, Richard and Estlin, Edward John and Kosko Okello, Kennedy and Akello, Franceska and Okello, James and Idro, Richard and Abbo, Catherine and Ouma, Simple (2026) Community perceptions of the causes of autism and help-seeking responses : a multi-site qualitative study across northern Uganda. Autism, 30 (6). pp. 1430-1442. ISSN 1362-3613

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Abstract

Understanding the causes of autism in sub-Saharan Africa remains limited, contributing to stigma and delayed identification. This multi-site qualitative study examined community explanatory models of autism and related help-seeking practices in Northern Uganda. Data were generated through 25 semi-structured interviews and 4 focus group discussions (N = 64) across 1 urban and 2 rural districts in the Acholi sub-region. Participants included autistic young people, caregivers, health and education professionals, community, cultural and religious leaders, and government representatives. Data were analysed inductively. Four interrelated themes were identified: unknown causes, supernatural explanations, biopsychosocial attributions, and help-seeking pathways. Autism was frequently misunderstood and conflated with ‘mental illness’ or general learning difficulties. Supernatural accounts, such as witchcraft, curses, and divine punishment, were prevalent and often gendered, with mothers disproportionately blamed. Biopsychosocial explanations included contraceptive use, obstetric complications, genetic factors, and post-conflict trauma. These causal beliefs shaped different help-seeking trajectories, typically prioritising religious and traditional interventions before biomedical care. Stigmatising interpretations were linked to social exclusion, neglect, physical abuse, and, in extreme cases, infanticide. Findings highlight the entanglement of cultural, spiritual, and biomedical models in a post-conflict, low-resource context. Interventions addressing misconceptions and maternal blame may reduce stigma, support earlier identification, and prevent avoidable harms. Lay Abstract: This study looked at how people in Northern Uganda think about autism and what they believe causes it. Researchers spoke with 25 people through one-on-one interviews and 4 group discussions (with 8–10 people per group for a total of 39 people) in 3 districts of the Acholi region of Uganda, covering both urban and rural areas. The data were transcribed and interpreted to understand what seemed most important across all the participants from the interviews and focus groups. Four main themes were identified: (1) Unknown causes, (2) Supernatural causes, (3) Biopsychosocial causes, and (4) Help-seeking responses. Overall, the study found that autism is often poorly understood. Many participants linked it to supernatural explanations, such as witchcraft or punishment from God. Mothers were often blamed and seen as responsible for their child’s condition. People also pointed to wider influences, including modern medical interventions and the long-term effects of war and displacement, as possible causes. These beliefs led to traditional, religious, and modern medical help-seeking responses. Where families followed traditional responses, this could have serious consequences, including harm or even death for the child. This study highlights the importance of working with communities in culturally respectful ways to better understand their perspectives. This can lead to earlier recognition, reduced stigmatisation, better education, and stronger support.