Understanding Parents' and Professionals' Knowledge and Awareness of Autism in Nepal

Background:  

Autism is a global phenomenon. While in Western countries such as the US and UK, prevalence estimates of autism spectrum disorders are around 1% of the population, much less is known about the prevalence of autism in countries outside of the US and Europe, or indeed of the way that autism is manifested in individuals from different countries. Indeed, cross-cultural differences (in eye gaze processing, for example) have caused some researchers to call for the need to determine culturally specific understandings of autism, especially in developing and underserved populations (Grinker et al., 2012), like Nepal.

Objectives:  

The aim of this study was to examine parents and (health and education) professionals’ perceptions and understanding of typical and atypical development in both rural (Makwanpur District) and urban (Kathmandu Valley) Nepal, focusing specifically on autism. 

Methods:  

In collaboration with our community partner, Autism Care Nepal, we carried out 9 focus groups with health workers, junior and senior paediatricians, primary school teachers and parents of autistic and non-autistic children in Makwanpur and Kathmandu 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. The majority of participants felt that environmental factors (e.g., parenting style, home or school environment) were key causes of atypical child development. Furthermore, junior doctors, who receive very limited training in childhood developmental disorders like autism, felt that doctors in general had some knowledge of developmental conditions like autism but no understanding of how to manage and support these children and their families in the long-term. In contrast, senior doctors felt they had had no training at all or theoretical training only in the recognition and management in disorders of child development. Many participants called for wider awareness of autism in the community through special schools or awareness campaigns in the media.

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. The next step, prior to a prevalence study, is to explore the ethical considerations of disclosure of risk of or definite diagnosis of autism in Nepal.