Parental Experiences of Autism Diagnosis Disclosure in Social Context

This study explored the experiences of parents of autistic adolescents (aged 12–19) regarding the disclosure of their child's diagnosis to their social environment. While the importance of environmental support is widely recognized, the communicative and emotional process of disclosure during adolescence—a developmental stage characterized by emerging autonomy and identity—remains under-researched. Integrating Petronio’s Communication Privacy Management (CPM) theory and Bronfenbrenner’s ecological systems theory, this qualitative-phenomenological study utilized semi-structured interviews with 18 Israeli parents, the majority of whom work in therapeutic and educational fields. The thematic analysis revealed four central themes: (1) competing motivations for disclosure, balancing instrumental needs for resource mobilization against barriers such as affiliate stigma and a cultural climate that weaponizes autism as a derogatory term; (2) a developmental shift along the chronosystem, where adolescents gradually transition from being objects of information to legitimate co-owners of their diagnosis, necessitating parental negotiation for permission; (3) the mechanisms of disclosure, ranging from strategic-planned to forced-reactive sharing, which yield a dual emotional echo of cathartic relief versus overwhelming anxiety and boundary turbulence; and (4) an active feedback loop shaped by environmental responses, where affirming reactions encourage further openness, while critical or offensive reactions trigger immediate boundary closure and social withdrawal. Ultimately, this study conceptualizes privacy management not merely as an internal family decision, but as a strategic tool used by parents to actively navigate and recalibrate their ecological environment. Practically, these findings highlight a significant gap in clinical practice, which currently focuses primarily on intra-familial dynamics while leaving caregivers without structured guidance for external disclosure. Accordingly, there is a vital need for tailored parent guidance interventions during adolescence that equip caregivers with practical tools to negotiate information co-ownership with their youth and empower them to navigate diagnostic disclosure across their broader social environment.

Keywords: Autism spectrum disorder, adolescence, diagnosis disclosure, Communication Privacy Management (CPM), ecological systems theory, qualitative research.