Communicating About Sexuality in Autism: Experiences of Primary Caregivers

Sexuality is a fundamental part of human development and should be addressed in its physical, emotional, and social dimensions. However, when it involves autistic children and adolescents, the topic remains marked by taboos, silence, and misinformation, especially within families. To understand the experiences of caregivers of autistic children and adolescents in Brazil and Spain regarding communication about sexuality, a qualitative narrative study was carried out based on Bronfenbrenner's Bioecological Theory. The research was conducted in Brazil and Spain. In Brazil, participants were recruited in person and remotely; in Spain, recruitment occurred online with academic and social media support. Data were collected through in-depth interviews and field notes using a semi-structured script. Inductive thematic analysis was used to identify recurring patterns. Nineteen caregivers participated, mostly mothers. Two narrative syntheses emerged: (a) "Breaking the Silence," showing how family silences, trauma, lack of knowledge, and autism-related challenges create emotional and cognitive barriers; and (b) "Navigating Fragilities, Improvisations, and Discoveries," illustrating daily dilemmas, avoided topics, improvised strategies, and limited institutional support. The Bioecological Theory revealed influences from personal, relational, institutional, cultural, and temporal systems. Sexuality, though recognized as essential, remains surrounded by silence, discomfort, and educational gaps, with tensions intensified by the specificities of autism.Lay AbstractSexuality is a natural part of growing up, and this also applies to autistic children and adolescents. However, many families still struggle with silence, taboos, and a lack of reliable information when trying to talk about these issues. This study explored how caregivers in Brazil and Spain experience conversations about sexuality with their autistic children and adolescents. Nineteen caregivers, mostly mothers, participated in in-depth interviews in which they shared their everyday difficulties, worries, and learning processes. The findings revealed two main storylines. The first, "Breaking the Silence," shows how family taboos, past traumas, limited knowledge, and autism-related difficulties create emotional and practical barriers to communication. The second, "Navigating Fragilities, Improvisations, and Discoveries," illustrates how caregivers often face unexpected situations, avoid sensitive topics, improvise strategies, and receive little support from institutions such as schools and health services. Using Bronfenbrenner's Bioecological Theory, the study shows that communication about sexuality is shaped by multiple layers: personal beliefs and emotions, family relationships, institutional guidance, cultural norms, and changes over time. Overall, families recognize the importance of discussing sexuality, but the topic remains surrounded by discomfort and educational gaps, difficulties that become even more complex in the context of autism.