A qualitative study exploring the psycho-social experiences and difficulties of parents who have a child with Autism Spectrum Disorder (ASD) : within a South African context.

Abstract

ASD is a neuro-developmental disorder that is associated with lifelong deficits in social and communicative abilities as well as ability to function independently. A diagnosis of ASD also has major consequences for the parents, with the potential to radically change and affect the entire family. It has been suggested that amongst childhood developmental disorders, ASD may be one of the most stressful for parents to manage. The evidence of increasing prevalence rates worldwide and of the burden of care associated with ASD emphasises the need for further exploration of parental experiences. This study investigated the experiences and challenges of parents who have a child with ASD within a South African context,specifically the Western Cape.

Methodology: The study examined parental difficulties qualitatively, through semi-structured interviews and analysed the results using thematic analysis. The results were discussed within the theoretical context of the Resiliency Model of Family Stress, Adjustment and Adaptation proposed by McCubbin and McCubbin (1993).

Findings: An analysis of the interviews revealed a number of significant themes which offer insights into the psychosocial experiences of parents of a child with ASD as well as the factors that impact family resilience and coping. Emerging themes highlighted two contending and yet interlinked trends (vulnerability and resilience) that permeated the experiences of parents of children with ASD, thus expanding the insights into parental experiences beyond that of a deficit-based understanding to a multi-faceted perspective. The findings suggest a multi-dimensional perspective on resilience in these parents may be beneficial in order to fully understand their experiences and in turn support them appropriately. ASD research remains limited in South Africa despite growing interest in expanding the research base within this context. This research study provided the opportunity for in-depth exploration of parental experiences and challenges relating to raising a child with ASD in a South African setting.The findings highlight the value further research in this area could hold and therefore emphasises the need for further exploration.