South African Participants’ Journey Through Their Sibling’s Autism Diagnosis

While considerable research has examined the family impact of Autism Spectrum Disorder (ASD) from a parental perspective, the experiences of typically developing siblings remain underexplored, particularly in culturally diverse settings like South Africa. This qualitative study investigated how siblings adjusted to receiving their autistic sibling’s diagnosis and its influence on sibling dynamics. Twelve participants shared their experiences of their autistic siblings’ diagnosis through a timeline genogram and semi-structured interviews. These interviews were analyzed using the Interpretive Phenomenological Approach (IPA). The study revealed that participants experienced significant uncertainty and confusion prior to their sibling’s diagnosis. Participants reported that familial reassurances and the subtle nature of ASD symptoms often led to the dismissal of initial concerns, exacerbated by a prolonged diagnostic process. Following the diagnosis, siblings embarked on a journey to understand and adapt to their sibling's disability, influenced by cultural context, parental explanations, and independent research. The findings further indicated that families who actively communicated about the ASD diagnosis fostered greater acceptance and stronger sibling relationships. Conversely, limited information often resulted in challenges and a sense of distance in the sibling relationship. Effective communication and culturally informed interventions are essential to helping families navigate the challenges of ASD and improve overall sibling and family dynamics.