Exploring the journey of South African caregivers who have a child with Autism Spectrum Disorder (ASD) symptoms.

Abstract

The principal aim of the present study was to explore the experiences of Black South African caregivers with children that present with Autism Spectrum Disorder (ASD) symptoms. The specific objectives were, inter alia, to discover how these caregivers interpret and understand their children‘s symptoms, the kind of help providers (African and/or Western) they approached in search of diagnosis and healing for their children‘s illness, and the specific ways their efforts impacted on their lives. The findings showed that the participating caregivers were severely and negatively affected in four main ways in their journey towards obtaining an understanding and a cure for their children‘s ASD symptoms. These negative effects included firstly, the stress and demoralizing experience when discovering that they had children with ASD symptoms. Secondly, there was emotional restlessness and lack of closure that came with knowing that there would be no predictable way of finding a lasting solution to their children‘s illness. Thirdly, there was the pain of conflicted epistemology of healing that came with discovering that neither of the two worldviews for explaining people‘s illness, indigenous or Western, was able to give decisive and conclusive guidance in the interventions being sought. This forced most of the caregivers (five of the seven) to engage in multiple and emotionally draining back-and-forth approaches consulting with help providers drawing from conflicting and alternative epistemologies of healing. Finally, there was the damaging impact of excessive financial erosion and burden that go with the challenge of having to engage in multiple and alternative journeys in search of solutions to the problem of their children‘s ASD symptoms.