Caregiver's Perspectives on Disclosing the Diagnosis of Autism Spectrum Disorder to Their Children.

This study interviewed 16 mothers about how they tell their children about their autism diagnosis. Researchers found that disclosure is an ongoing journey, not a one-time conversation. Parents' language evolved from using gentle, positive terms to more balanced descriptions that include both the good and challenging aspects of autism. The study supports that telling children about their autism diagnosis early and in age-appropriate ways is important for their wellbeing and self-understanding.

This qualitative study explored how 16 caregivers (all female, 14 White) in the United States approach disclosing autism diagnoses to their children. Through thematic analysis of semi-structured interviews, researchers identified four key themes: Language of Disclosure, Disclosure as a Journey, Purpose of Disclosure, and Process of Disclosure. The study found that parents' metaphors for describing autism evolve from positive euphemisms to more balanced, realistic descriptions that acknowledge both strengths and challenges. Twelve caregivers had professional or volunteer experience with the autism community.

The research addresses a gap in US-based qualitative disclosure studies and reinforces existing literature emphasizing the importance of early, tailored disclosure for better quality of life and self-image in autistic children.

Clinicians should support families in viewing disclosure as an evolving process requiring age-appropriate language adjustments. Professional guidance may help parents transition from overly positive descriptions to balanced perspectives. The four identified themes provide a framework for structured disclosure conversations and ongoing support.

Small sample size (n=16) with limited diversity (all female, predominantly White caregivers). Majority had professional autism community exposure, potentially creating selection bias. Single geographic region limits generalizability. Qualitative design cannot establish causal relationships or broader population prevalence.

There is growing literature emphasizing the importance of early and tailored parental disclosure of an autism diagnosis to their children. While there are barriers to disclosure, most parents agree that children have a right to know of their diagnosis, with early disclosure being associated with a better quality of life and self-image. Within the literature, however, there is scarcity of populations from the United States represented in qualitative disclosure studies. With the impact of culture and location on language, this study aims to address this gap.

Caregivers of children with prior diagnosis of ASD (n = 16) were recruited to participate in semistructured interviews. Blinded transcripts of interviews were used to individually create codes that were formed into themes based on consensus of the researchers through thematic analysis. Of the 16 caregivers interviewed, 14 were White and all 16 were female. Twelve caregivers reported working or volunteering in areas with high exposure to the autism community.

Thematic analysis yielded 4 themes relating to diagnosis disclosure: (1) Language of Disclosure, (2) Disclosure as a Journey, (3) Purpose of Disclosure, and (4) Process of Disclosure. This exploratory, qualitative study examines caregiver's perspectives on the disclosure process, strengthening the consensus with emerging literature surrounding the process of disclosure and highlighting the role language plays in the disclosure process. More specifically, the metaphors used by parents to describe autism change from generally positive euphemisms to more well-balanced and realistic metaphors that encapsulate both triumphs and struggles that accompany an autism diagnosis.