The Why-When-How-What Model: Autistic Persons Advise Parents on Diagnosis Disclosure

Abstract

Abstract Purpose: Being diagnosed with autism has multiple implications for a person’s life and self-identity. Although learning about autism at a younger age is correlated with quality of life, only a few studies have addressed parental disclosure thereof. This study conceptualizes autistic adults' perspectives on parental disclosure. Methods: The methods combine grounded theory with the emancipatory research paradigm, drawing on autistic people's personal knowledge. Eighty-five autistic adults participated in six focus groups (51 male, 33 female, 3 non-binary; Mage = 25); and 41 autistic adults were interviewed (22 male, 17 female, 2 non-binary; Mage = 28). Results: Both focus groups and individual interviews addressed the way participants learned about their diagnosis from their parents, and their recommendations to other parents on how to disclose. Based on these findings, we developed the Why-When-How-What Model of Parental Disclosure. The participants viewed the diagnosis as validating their experienced otherness, helping them overcome shame, and promoting their self-understanding and self-advocacy skills. They recommended disclosure as soon as possible after diagnosis, and stressed the importance of gradual disclosure according to the child's abilities, and discussing how autism manifested in the child’s own life as a neutral or positive quality, rather than “autism” in general, and highlighting strengths. Finally, they recommended networking the child with other autistic individuals. Conclusion: Parental disclosure is an ongoing and spiral process. The proposed model contributes to post-diagnostic support for parents throughout.