Raising a child with autism spectrum disorder: Black South African parents’ reported lived experiences

Abstract

Autism Spectrum Disorder (ASD) is increasingly becoming a significant public health concern in developing countries, particularly in South Africa, where cultural factors significantly affect perceptions and diagnoses of ASD. This presents challenges for early identification and support. Parenting a child with ASD brings considerable physical, emotional, social, and financial challenges. To understand the impact of raising a child with ASD on parents, a qualitative research design was implemented, utilising semi-structured interviews for data collection. A total of six interviews were conducted for this study, focusing on the experiences of black South African parents raising children with ASD. The study aimed to explore the experiences of black South African parents raising children with ASD, focusing on their beliefs and social experiences, as well as the impact on family dynamics. Findings revealed significant gaps in knowledge about ASD, which impeded early identification and management. Parents experienced long waits for diagnoses and often turned to traditional healers for understanding. The study indicated that raising a child with ASD impacts interpersonal relationships, particularly emphasising gender roles where men felt pressured to be emotionally strong for their partners, resulting in difficulty expressing their feelings. Financial strain was a common challenge reported by all parents. Research findings of the current study revealed that increased awareness of ASD in black South African communities is crucial. Psychoeducation could empower parents, counter misconceptions, reduce stigma, and enhance support systems. Additionally, there is a pressing need for healthcare professionals to provide more comprehensive care and understanding of ASD implications for families. Expanding the number of ASD-specialised healthcare professionals in South Africa is also essential.