G256(P) Understanding parents’ and professionals’ knowledge and awareness of autism in nepal

Abstract

Background Autism spectrum disorder (ASD) is a global phenomenon. While in Western countries such as the US and UK, prevalence estimates of ASD are around 1%, much less is known about its prevalence in other settings. Cross-cultural differences (e.g., in eye gaze processing) have caused some researchers to call for the need to determine culturally specific understandings of ASD, especially in developing and underserved populations like Nepal. Aims To examine parents and professionals’ understanding of typical and atypical development in both rural (Makwanpur District) and urban (Kathmandu Valley) Nepal, focusing specifically on ASD. Methods In collaboration with our community partners, Autism Care Nepal and Mother and Infant Activities Nepal, we conducted 9 focus groups with health workers, junior and senior paediatricians, primary school teachers and parents of autistic and non-autistic children and 9 semi-structured interviews with early childhood development (ECD) teachers, faith healers, paediatricians and other people working in the disability sector in Makwanpur. The focus group and interview schedules included questions about typical development and vignettes of typically and atypically developing children. Results Overall, those parents and professionals who were not directly involved with atypically developing children had very little awareness of autism. Participants, particularly parents of non-autistic children, used terms such as “doggedly child”, “lonely child”, “introvert, “egoistic”, “dumb”, or “mental patient” to describe vignettes of children with autism. Most participants felt that environmental factors (e.g., parenting style, home or school environment) were key causes of atypical child development. Health and education professionals reported they had received limited training in identification and in particular management of children with atypical development. Many participants called for wider awareness of autism in the community through special schools or media awareness campaigns. Conclusions This is the first study to examine parents and professionals’ understanding of typical and atypical child behaviour and development in rural and urban Nepal. These findings clearly show the lack of awareness of developmental disorders, such as autism, from both parents and professionals alike. These results have important implications for future work aiming to increase awareness and enhance support available for autistic children and families in Nepal.