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