African primary caregivers' understanding and experience of having a child with autism.

Abstract

Autism Spectrum Disorder (ASD) largely remains an unknown form of neurodevelopment

disorder, despite the global trend of increasing prevalence. South Africans, in general, have

little awareness and knowledge about this relatively rare form of neuro-developmental

disorder which could so easily be misunderstood due to the major areas of difficulty

experienced by children with ASD. The aim of this study is to explore African parents’

experiences in relation to having an atypically developing child who is eventually diagnosed

with ASD. A qualitative approach was adopted in this study, so that the researcher could gain

a “rich” description of the participants’ experiences of raising a child with ASD. The

pathways and steps taken to arrive at this diagnosis and their reactions to the diagnosis were a

central aspect of this research. Eight black South African parents (mothers and fathers) of

children who have been diagnosed with ASD, were interviewed to ascertain their

understanding of their both typical developmental patterns and their child’s atypical

development, the experience of getting the diagnosis and the experience of how raising a

child with ASD has been and is for them as African parents. The data obtained was analysed

using thematic analysis. The results suggested that African parents experience and

understanding of ASD is largely influenced by their frames of reference. Further, the parents

turned to their traditional beliefs when faced with challenges. However, other interventions

such as religion and finally the western practices were explored by the parents. This study

therefore concludes that the African parents understanding and experiences of raising a child

with ASD is initially influenced by the parents cultural frame of reference and later by

western exposure.