Highlighting Grandparents’ Experience: Challenges and Tensions in the Upbringing of Children with Autism Spectrum Disorder (ASD)

This study investigates the experiences of grandparents engaged in raising children with Autism Spectrum Disorder (ASD), aiming to illuminate the challenges and tensions they face in this caregiving role and provide valuable insights into the unique dynamics of grandparent-grandchild relationships. Through semi-structured interviews with seven Brazilian grandmothers, thematic analysis was conducted on the recorded and transcribed narratives. Three key aspects emerged: intrapersonal aspects encompassing their emotional experience, limited understanding of ASD and role strains; micro-systemic aspects involving basic care for the grandchildren, such as managing routines, dietary needs, and communication; and beyond micro-systemic aspects, managing the perceptions and well-being of other family members, accessibility and availability of institutional resources and the uncertainties of grandchild’s future. Also, the study identified tensions between grandparents and parents in the upbringing of children with ASD, primarily stemming from different parenting styles or variations in knowledge about ASD. Interestingly, these challenges served as catalysts for grandparents’ personal development, providing opportunities for growth in educational, relational, and cognitive dimensions. The findings contribute to a deeper understanding of the complexities involved in the grandparent’s role and have implications for tailored interventions and support services to meet their specific needs, ultimately enhancing the support system for families raising children with ASD.