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.

‘You are labelled by your children’s disability’ – A community-based, participatory study of stigma among Somali parents of children with autism living in the United Kingdom

“…Our research supports the findings of other recent studies in Australia (Broady, Stoyles, and Morse 2015), Nepal (Heys et al 2016), Pakistan and India (Minhas et al 2015), China (Lu et al 2015), the USA and Canada (Kinnear et al 2016) that suggest stigma continues to be a significant challenge for many families of children with autism, irrespective of their ethnic and cultural backgrounds. Kinnear et al's (2016) study in North America found that stigma and their child's autism-related behaviours played the largest roles in making parents lives challenging.…”

A Conceptual Framework for Understanding the Cultural and Contextual Factors on Autism Across the Globe

“…The causes of autism are complex and multi-factorial (Lai et al, 2013); most cases of autism are idiopathic and this uncertainty may add to the plethora of perceived causes reported by parents of children with ASD. Examples of biological or medical explanations attributed to ASD are hereditary factors (Gona et al, 2015;Heys et al, 2017), infectious disease (Gona et al, 2015;, an accident (Al-Dababneh, Al-Zboon, & Baibers, 2016;Minhas et al, 2015;Shaked & Bilu, 2006;Tilahun et al, 2016), complications during pregnancy or birth (Al-Dababneh et al, 2016;Gona et al, 2015;Heys et al, 2017;Shaked & Bilu, 2006;Shyu, Tsai, & Tsai, 2010;Tilahun et al, 2016) or malnutrition (Gona et al, 2015;Heys et al, 2017). In the USA the most common perceived causes reported by parents are genetics/heritability and environmental risk factors, including heavy metals, food, pesticides, pollution and other exposures (Chaidez et al, 2018;Zuckerman, Lindly, & Sinche, 2016).…”

“…Supernatural explanations include attributing ASD to a curse, a sin or a punishment from God (Gona et al, 2015;Heys et al, 2017;Tilahun et al, 2016). The majority of mothers in a Jewish ultraorthodox sample in Israel reported the belief that the child with ASD has come to rectify a sin, paving the way to Paradise (Shaked & Bilu, 2006).…”

Parental Perceptions, Attitudes and Involvement in Interventions for Autism Spectrum Disorders in Sarawak, Malaysia

“…Awareness and understanding of ASD is lacking in developing countries (Al-Sharbati et al, 2013;Low & Zailan, 2016). This may be due to the poor infrastructure, dearth of practitioners, overall lower education levels, stigma associated with disability, traditional parental roles in child rearing, underlying cultural elements, and competition for resources in national spending (Rahbar et al, 2010;Wang et al, 2013;Tait et al, 2015;Heys et al, 2016;Blake et al, 2017). Faced with these hurdles, parents find it challenging to obtain resources, support, and maintain motivation throughout the long years of educating a child with ASD.…”