An interpretative phenomenological analysis of mothers' experiences raising an autistic child

Abstract

There has been an increasing research focus on Autism Spectrum Disorder (ASD) and the experiences of those affected by autism. Previous research has demonstrated that mothers experience difficulties in all spheres related to their autistic child. Mothers were focused on exclusively in this study as previous research found that it is mostly mothers who take on the primary caring role for their children. As a result, this research aimed to explore the perceptions and experience of six South African mothers raising their ASD child. This research used a qualitative research approach and an interpretative phenomenological analysis methodology. Two semi-structured interviews were held with each participant, with interviews being audio recorded. After analysis, five themes were found, namely: (1) learning their child has a condition or diagnosis, (2) learning and sharing about ASD, (3) the mothering experience, (4) interventions and cost and (5) supportive resources. Careful anonymisation choices were made in this research to ensure the anonymity of participants as best as possible, due to the recruitment through a gatekeeper organisation and snowball sampling. The main findings of this study were that mothers experienced difficulties and challenges as they navigated the medical world in search of a diagnosis for their child. Mothers also reported following their intuition when it came to their children's care, interventions, and schooling. The passage of time was a significant issue to mothers, as they described several delays and waiting periods. Mothers also described their concerns regarding their children's future and the fact that their child would be dependent on them and would not be able to form autonomous mature relationships with others. They also reported various thoughts on disclosing their child's diagnosis to their children. This research, therefore, added to and expanded upon South African literature on the experiences of mothers raising their ASD child. Concurring with previous research, this project found that mothers experience many challenges in the raising of their ASD child.