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 traditional beliefs and understandings of disability also make families of children with ASD feel ashamed, guilty, inferior and worried.Parents of children with ASD suffer confusion and distress as they seek diagnosis, have access to limited services, seek various kinds of interventions and worry about their child’s education and future. Parents are mostly solely responsible for their children’s education and interventions. Limited political and economic supports exacerbate the difficulties of families with ASD in accessing services for their children. Despite policies supporting mainstream education for children with disabilities, parents find little support for integration and some resort to bribing schools to accept their child. Parents’ resilience is evident in their care and love for their children.Photovoice provided rich insights into the lived experiences of children with ASD, their interests, worldview, sensory experience and relationships. Such visual methods are a useful means of engaging children with ASD, and their parents in research and communicating their lived experience. It also provides an opportunity for them to educate the community and advocate for their children’s needs. However, as my study shows, undertaking photovoice is time-consuming and requires intensive input and flexibility. Ethical considerations include the need for careful communication on the study purpose, informed consent and asking permission to take photographs of other people. Furthermore, content analysis provides very limited understanding of the visual data. The combination of a participatory approach and ethnographic study helps to fully contextualise the photographic data. In this study the use of photovoice also resulted in a public exhibition of children’s photographs for advocacy and education of the general public – an example of participatory research resulting in action for the benefit of study participants.This study also documents the nascent advocacy movement within Vietnam for individuals on the spectrum. Families affected by ASD enact new forms of biosociality – coming together around their common interests in ASD. These include manipulating existing systems, learning, challenging and disseminating knowledge, creating their own groups, establishing new forms of service delivery, and constructing new identities for their children and themselves. Parents work together to reframe definitions of the biological condition of ASD. Through their advocacy work and education efforts with health professionals they seek to address power differentials and assert their children’s rights.