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

Abstract

Objective: 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.

Method: 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.

Results: 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.

Conclusion: 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.