Community Perceptions of the Causes of Autism and Help-Seeking Responses: A Multi-Site Qualitative Study Across Northern Uganda.

Only three districts in the Acholi region of Northern Uganda were included, so the findings may not hold elsewhere in Uganda. Most autistic young people took part in focus groups alongside trusted adults, whose presence may have shaped what they said, and most found it hard to express themselves through conventional interview methods. The accessible visual methods offered were not used by any participant, so there is less data from autistic participants than from other groups. The people leading the analysis were not from Uganda and were not autistic, and formal checking of findings with participants was not possible. The accounts of abuse, neglect and infanticide were anecdotal reports rather than counted cases or records. Results were deliberately not broken down by district, so differences between the urban and rural sites are not reported.

The study was funded by the Joy Welch Fund, UK. The authors declared no potential conflicts of interest. All but two members of the research team were Ugandan and based in the Acholi region, two members had direct family experience of autism, and six authors were trained medical professionals with experience of autism.

Do not read the reported causes as facts about what causes autism. They are what 64 community members, teachers, health workers parents and young people in three districts said they believed, and they cannot show whether any of those things actually cause autism. The accounts of abuse and of children being left to die were anecdotal descriptions, including of past practice that participants said was becoming less common, not counted cases. This study reports no treatment and no outcomes, so it cannot tell you what works.