Understanding the journeys of Black Caribbean parents who have children with autism

This qualitative study explores the journeys of Black Caribbean parents (BCPs) living in the UK who have children with autism. It focuses on the experiences, thoughts, and processes surrounding their child’s autism diagnosis, and how cultural factors intersect with them. This study contributes to a small but growing body of knowledge exploring both autism and culture. It elevates the voices of BCP who have not yet been exclusively represented in autism research. It also presents the perspectives of a group widely reported in education statistics (e.g., school exclusion and attainment rates), but often not heard themselves. Six BCPs, who collectively had ten children with autism, were interviewed using semi-structured interviews. The data was analysed using a grounded theory methodology (Corbin and Strauss, 2015), resulting in the development of the essential super-advocacy theory. The essential super-advocacy theory proposes that BCPs who have children with autism are required to become ‘super-advocates’ to provide the essential, fervent, and persistent advocacy that their children will need. It presents three ‘essential super-advocacy factors’ needed to do this, which are a) enhanced autism awareness and ongoing learning, b) the ability to overcome stigma and inner conflict, and c) connection and collaborative support. The essential super-advocacy theoretical model illustrates how these factors are developed over time and across three stages. These stages involve a series of events and processes shaped by the BCP’s socio-cultural contexts and experiences. The implications of these findings consider how Black Caribbean parents and their children with autism can best be supported by professionals who work with them, including educational psychologists.