Understanding parents' and professionals' knowledge and awareness of autism in Nepal

Autism. 2017 May;21(4):436-449. doi: 10.1177/1362361316646558. Epub 2016 May 19.

Abstract

Autism is a global phenomenon. Yet, there is a dearth of knowledge of how it is understood and its impact in low-income countries. We examined parents' and professionals' understanding of autism in one low-income country, Nepal. We conducted focus groups and semi-structured interviews with parents of autistic and non-autistic children and education and health professionals from urban and rural settings ( n = 106), asking questions about typical and atypical development and presenting vignettes of children to prompt discussion. Overall, parents of typically developing children and professionals had little explicit awareness of autism. They did, however, use some distinctive terms to describe children with autism from children with other developmental conditions. Furthermore, most participants felt that environmental factors, including in-utero stressors and birth complications, parenting style and home or school environment were key causes of atypical child development and further called for greater efforts to raise awareness and build community capacity to address autism. This is the first study to show the striking lack of awareness of autism by parents and professionals alike. These results have important implications for future work in Nepal aiming both to estimate the prevalence of autism and to enhance support available for autistic children and their families.

Keywords: autism; child development; focus group; low-income country; qualitative.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Aged
  • Autistic Disorder* / psychology
  • Child
  • Child, Preschool
  • Developing Countries
  • Female
  • Focus Groups
  • Health Knowledge, Attitudes, Practice*
  • Health Personnel / psychology*
  • Humans
  • Interviews as Topic
  • Male
  • Middle Aged
  • Nepal
  • Parents / psychology*
  • Young Adult