Exploring the autism “diagnostic odyssey” in the Greater Accra region of Ghana

Abstract

Introduction: Despite the increasing global prevalence of autism spectrum disorders (ASD), there is limited information about ASD in Africa. Existing research on ASD in Africa shows that autistic children are diagnosed relatively late or not at all. The purpose of this study was to understand the barriers to an autism diagnosis and to engage key stakeholders to action plan steps to reduce the barriers. Methods: We conducted a participatory, mixed methods study using semi-structured interviews, a survey, photo elicitation, and focus groups with 11 participants (four parents and seven health professionals) in the Greater Accra region of Ghana. Findings: Neuro-paediatricians in our study reported that it takes, on average, two to six visits over two weeks to two years or more to diagnose a child. Our thematic qualitative analysis yielded three overarching themes, with barriers and facilitators for each: 1) Systemic, 2) Community, and 3) Parent/Family factors that influence the diagnostic process. The action plan of our stakeholder focus group prioritizes community education to dispel myths and encourage autism acceptance within the Ghanaian community. Conclusion: Knowledge about the diagnostic odyssey can help facilitate early diagnosis and intervention. Implications for practice This research study confirmed known challenges to the autism diagnostic process. It contributed nuanced insights into the role of culture, the importance of education, and the need for community involvement in improving the diagnostic process, early occupational therapy intervention, and autism acceptance within the community.