Evaluating a Training to Improve Autism Knowledge and Stigma in Kenya

Background: Autism resources remain scarce in Kenya (Riccio, 2011). In one of the only prior studies about autism in Kenya, parents and educators reported experiencing stigma and misconceptions about autism (e.g., caused by witchcraft) and pronounced challenges accessing care (Gona et al., 2015). Although autism affects people at similar rates globally (Elsabbagh et al., 2012), services are far from equally distributed (Hahler & Elsabbagh, 2015). Inequalities in access to care are sustained by financial and geographical barriers, such as lack of governmental support and a paucity of information and trained professionals, and cultural differences, including stigma. A central strategy recommended by the WHO (2013) to address inequalities is training “non-specialists” to provide care and promote understanding. In regions with insufficient infrastructure, family members often bear the full responsibility for educating autistic individuals and lead the way in developing infrastructure (Feinstein, 2010). Trainings have the potential to begin to address global disparities in access to care by empowering the people who are already caring for autistic individuals in low-resource areas (Brezis et al., 2015; Harrison et al., 2016; Tilahun et al., 2017).

Objectives: We evaluated if participation in an autism training was associated with increased autism knowledge and decreased stigma among parents, professionals, and students in Kenya.

Methods: In collaboration with the Kenya Autism Alliance and autistic college students, we adapted a training, previous iterations of which have been associated with improved knowledge and/or stigma among internationally (Gillespie-Lynch et al., 2015; Obeid et al., 2015; Someki et al., 2018). We delivered two half-day long trainings in Nairobi and Mombasa. Ninety-eight people attended the trainings, 89 answered optional pre- and post-tests for gift cards, 74 (34% parents, 37% educators) provided complete data. We adapted two knowledge measures, Stone’s Autism Survey and Harrison’s ASK-Q, to address strengths and challenges and align with the cultural context. We measured stigma with a social distance scale. Nine open-ended questions assessed access to care and personal/community conceptions of autism.

Results: Parents and educators demonstrated higher pre-test knowledge than others (ps < .03). Pre-test knowledge was high for both measures (M = 45.14, Range 13-65; M = 18.85, Range 0-22). Knowledge improved with training across measures (ps < .003). No group differences or changes in stigma were observed (ps > .56). Pre-test stigma was lower (M = 9.12; Range = 6-24) than stigma reported by college students in the US (M = 11.41), Lebanon (M = 12.94) and Japan (M = 15.65) who completed assessments online.

Conclusions: Participation in training was associated with improved autism knowledge among participants in two cities in Kenya who entered the training unexpectedly (given limited local resources) well-informed. In open-ended responses/discussions, parents described experiencing isolation, stigma, and lack of support and described some community members selling their farms to send children to India for STEM cell treatment, which is not evidence-based (Knoepfler, 2018). Findings highlight the potential of training while demonstrating that parents and educators in Kenya entered training well-informed. Autism trainings for low-resource regions should build on local knowledge and networks.