Yebo, it was a great relief’: How mothers experience their children’s autism diagnoses

Abstract

Background: There is an emerging body of knowledge on the lived experiences of parenting a child with autism from a maternal perspective. Mothers’ reactions to their children’s autism diagnoses have been identified as a key factor influencing their children’s long-term outcomes.

Objectives: This qualitative study aimed to explore how South African mothers experience their children’s autism diagnoses.

Method: Telephonic interviews were conducted with 12 mothers from KwaZulu-Natal to understand their experiences prior, during and following their children’s autism diagnoses. The data were analysed thematically according to the values of ubuntu, social support, culture, tradition, interpersonal relationships, interconnectedness and continuity and compared to the existing scholarship, employing an Afrocentric theoretical lens.

Results: The participants held strong cultural and religious beliefs which influenced the entire diagnosis process. Some, who waited a long time, turned to traditional healers or religious leaders. While some reported feeling relieved after the diagnosis, in the sense of at least having a name for their child’s condition, they also reported feeling overwhelmed by the realisation that there is no cure for autism. Over time, mothers’ feelings of guilt and anxiety declined, and they became increasingly resilient and empowered as their understanding of the meaning of their children’s autism diagnosis deepened, but many continued to pray for a miracle.

Conclusion: Future research should focus on how to enhance support for mothers and their children during each of the three phases of autism diagnosis: prior, during and following their children’s autism diagnoses.

Contribution: The study highlighted the crucial role of community-based religious and cultural organisations in providing appropriate support to mothers and their children diagnosed with autism, aligned to the values of ubuntu, social support, culture, tradition, interpersonal relationships, interconnectedness and continuity.