Raising a child with Autism Spectrum Disorder : the role of parent support systems

[摘要] ENGLISH ABSTRACT : Autism Spectrum Disorder (ASD) is a developmental disorder that is currently being diagnosedin one in every 59 children worldwide. It is considered one of the most stressful childhooddisorders for parents to cope with, and it has been associated with the escalation of economic-,social-, physical- and psychological strain on families, as well as a decrease in overall familywell-being. Parents, who are faced with the challenges of raising a child with ASD, are often ingreat need of social support. Social support can be provided in various forms and come from avariety of sources. Research on parents' support needs for a child with ASD and the ways inwhich they perceive different support systems is important, as it could increase publicunderstanding of effective support systems for such parents. This study on the support systems ofparents of children with ASD is situated within the field of educational support, because parentsupport is an integral part of learner support.This qualitative study explored the value that support systems have in the lives of South Africanparents who are raising a child with ASD. The individual lived experiences of four parents withregards to their support needs and –systems were researched as guided by the following researchquestions:• What are the support needs of parents raising a child with ASD?• What are the experiences of parents with the support systems that they use?• Why do parents raising a child with ASD endorse some support systems over others?With narrative inquiry as design, I sought to tell the stories of these parents. My understandingwas that of multiple realities that are constructed by individuals who share similar, but alsounique, life experiences. I positioned myself in the interpretive paradigm, as I wanted tounderstand the individual lived experiences of these parents with regards to their support needsand –systems. Data was collected by conducting individual in-depth interviews with the fourpurposively selected parents who are the primary caregivers of a child with ASD, for the rich anduseful information they could provide.What the study revealed was that such parents face many personal-, family- and social challengesthat stem from their child's maladaptive behaviour and for which they need reliable supportsystems. The support these four parents relied on included personal resources, family support,friends, therapists and schools. The findings of this study have implications for how the learning-support environment needs to engage with children with ASD and their parents. What thenarratives of parents of children with ASD tell us, is that the support needs and valued supportsystems of each parent of a child with ASD are just as much on a spectrum as the children withASD are. Therefore, there should exist an understanding that, though families of a child withASD share similarities, each family's circumstances are unique, making it important tounderstand their specific needs and to support them and their child with ASD accordingly.

[发布机构] Stellenbosch University