Entre o brincar e o cuidar: desafios e possibilidades na vivência de uma irmã de criança autista

Abstract

Autism Spectrum Disorder (ASD) extends its impact beyond the diagnosed individual, influencing family dynamics and daily life. While studies often focus on the experiences of parents and caregivers, the lived experiences of the siblings of autistic children receive relatively little attention in literature and care practices. In this context, this study aimed to report the experience of an extension worker supporting an adolescent girl—the sister of a child with ASD—focusing on her experiences regarding her role as a sister and the resulting effects on her daily life. This is a qualitative, descriptive account of an experience developed within the scope of an extension project dedicated to supporting families of autistic children. Data were gathered through home visits, which included active listening, unstructured interactions, and activities utilizing expressive and play-based resources. Analysis of the records led to the identification of three thematic axes: understanding autism and the experience of having an autistic sister; daily life and family relationships; and the impacts and strengths regarding daily challenges. The results demonstrated that living with an autistic sister significantly influences routine organization, roles assumed within the family, and opportunities for leisure and social interaction. It was observed that the adolescent took on responsibilities related to her sister's care and family support, while simultaneously developing empathy, sensitivity to differences, and mediation skills. Challenges were also identified regarding increased responsibilities and a sense of invisibility amidst the central focus placed on her sister's needs. It is concluded that the experience of being the sister of an autistic child is marked by the coexistence of challenges and possibilities, reinforcing the importance of recognizing these individuals as active participants in family dynamics and as a group that also requires spaces for listening, support, and care. The findings contribute to broadening discussions on the role of Occupational Therapy with the families of autistic children, highlighting the need for interventions that encompass all family members.