Parents' voices: experiences and coping as a parent of a child with autism spectrum disorder

Abstract

INTRODUCTION: Autism Spectrum Disorder (ASD) requires a lifetime commitment of care and imposes significant stressors on families. This study aimed to understand the lived experiences and coping strategies of parents with children diagnosed with ASD. The study addressed one of the objectives of a larger project METHODS: An exploratory, qualitative study using purposive sampling to recruit parents of Children with ASD was used. Six individual interviews and one dyad interview provided the data for this study. Data were interpreted using thematic analysis FINDINGS: The study identified two major themes namely experiences of ASD and coping with ASD. Dealing with ASD was characterised by significant challenges associated with resource limitations, poor guidance from health professionals, protracted diagnostic processes, reduced awareness of ASD and stigma for families. Parents were resilient and empowered themselves to cope with the tough journey, with support systems providing a buffer to families. Parents identified support, resources and awareness as pivotal needs. Positive ramifications from parenting a child with ASD were the development of positive personality traits, increased spiritual faith and a greater appreciation of life. The study emphasised the need for increased resources and support for families to cushion their experiences of ASD Key words: Autism, lived experiences, coping strategies, parents, challenges