title: Understanding parents' and professionals' knowledge and awareness of autism in Nepal.
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.
authors.affiliation: 1 University College London, UK.
authors.forename: Michelle
authors.initials: M
authors.lastname: Heys
authors.affiliation: 1 University College London, UK.
authors.forename: Amy
authors.initials: A
authors.lastname: Alexander
authors.affiliation: 1 University College London, UK.
authors.forename: Emilie
authors.initials: E
authors.lastname: Medeiros
authors.affiliation: 2 Mother and Infant Research Activities, Nepal.
authors.forename: Kirti M
authors.initials: KM
authors.lastname: Tumbahangphe
authors.affiliation: 3 King's College London, UK.
authors.forename: Felicity
authors.initials: F
authors.lastname: Gibbons
authors.affiliation: 2 Mother and Infant Research Activities, Nepal.
authors.forename: Rita
authors.initials: R
authors.lastname: Shrestha
authors.affiliation: 2 Mother and Infant Research Activities, Nepal.
authors.forename: Mangala
authors.initials: M
authors.lastname: Manandhar
authors.affiliation: 1 University College London, UK.
authors.forename: Mary
authors.initials: M
authors.lastname: Wickenden
authors.affiliation: 4 Tribhuvan University Teaching Hospital, Nepal.|5 AutismCare Nepal Society, Nepal.
authors.forename: Merina
authors.initials: M
authors.lastname: Shrestha
authors.affiliation: 1 University College London, UK.|6 World Health Organization, Switzerland.
authors.forename: Anthony
authors.initials: A
authors.lastname: Costello
authors.affiliation: 2 Mother and Infant Research Activities, Nepal.
authors.forename: Dharma
authors.initials: D
authors.lastname: Manandhar
authors.affiliation: 1 University College London, UK.|7 The University of Western Australia, Australia.
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Pellicano
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D001321:Autistic Disorder / Q000523:psychology; D002648:Child; D002675:Child, Preschool; D003906:Developing Countries; D005260:Female; D017144:Focus Groups; D007722:Health Knowledge, Attitudes, Practice; D006282:Health Personnel / Q000523:psychology*; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D009390:Nepal; D010290:Parents / Q000523:psychology*; D055815:Young Adult
keywords: autism; child development; focus group; low-income country; qualitative