Understanding autism spectrum disorder in Hanoi, Vietnam

Abstract

Autism spectrum disorder (ASD) is now recognised as a public health concern worldwide with the reported prevalence substantially increasing. However, the understanding of this condition in Vietnam and in other low and middle income countries is still very limited. This study aims to understand the socio-cultural construction of ASD in Hanoi, Vietnam, and the experiences of children living with ASD. This study attempts to achieve its aim through objectives of (1) exploring the meanings attached to and the representations of ASD within the social and cultural context of Vietnam, (2) describing services and social supports available as well as barriers preventing children with ASD and their parents accessing services, (3) describing the lived experience of parents of children with ASD, and (4) exploring the utility of using 'photovoice' to engage children with ASD and communicate their experiences.Informed by theoretical frameworks of social constructionism, critical medical anthropology and disability studies, I conceptualise ASD within a set of multi-level interactions between individuals, families, community and society. My fieldwork took from July 2011 to end of May 2012 in Hanoi,Vietnam. This study employed a range of methodologies of ethnography and participatory action research. These included participant observation, photovoice with nine children with ASD and six parents, and in-depth interviews with 27 parents and 17 key informants. In addition, I also conducted an online self-administered survey with 125 parents, and collected secondary data.This study describes various limitations in assessment and diagnosis of ASD in Vietnam. These include the lack of clinical guidance for assessment and monitoring the quality of assessment at clinics; a lack of developmental screening for young children; a rushed and perfunctory process for the assessment and diagnosis of children; and poor communication between health professionals in assessment teams, and between professionals and parents of children with ASD. These result in a lack of early identification, a pattern of overdiagnosis, and limited support for the children and their parents during assessment.Children with ASD and their families in Hanoi experience various forms of stigma and discrimination. Children with ASD are often treated as one homogenous group with stereotypes as inauspicious, useless, stupid, and dangerous people. They experience limited health care, education and social integration. These result from misunderstandings of this condition, and the structural exclusion of people with disability. Cultural expectations of parenthood and childhood, and iii | P a g e

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