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Autistic People's Perspectives on Parental Diagnosis Disclosure: A Grounded Theory Study.

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Title:	Autistic People's Perspectives on Parental Diagnosis Disclosure: A Grounded Theory Study.
Authors:	Almog N; Disability Studies Program, Department of Education and Societal Studies, Ono Academic College, Kiryat Ono, Israel. nitsan.al@ono.ac.il., Keren EH; Ono Academic College, Kiryat Ono, Israel., Gabai T; Ono Academic College, Kiryat Ono, Israel., Kassel O; Disability Studies Program, Department of Education and Societal Studies, Ono Academic College, Kiryat Ono, Israel.
Source:	Journal of autism and developmental disorders [J Autism Dev Disord] 2025 Oct; Vol. 55 (10), pp. 3647-3661. Date of Electronic Publication: 2024 Jul 24.
Publication Type:	Journal Article
Language:	English
Journal Info:	Publisher: Springer Country of Publication: United States NLM ID: 7904301 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1573-3432 (Electronic) Linking ISSN: 01623257 NLM ISO Abbreviation: J Autism Dev Disord Subsets: MEDLINE
Imprint Name(s):	Publication: <2006- >: New York, NY : Springer Original Publication: New York, Plenum Press.
MeSH Terms:	Autistic Disorder/psychology , Autistic Disorder/diagnosis , Parents/psychology , Parent-Child Relations , Disclosure*, Humans ; Male ; Female ; Adult ; Grounded Theory ; Focus Groups ; Young Adult ; Middle Aged ; Quality of Life/psychology ; Adolescent
Abstract:	Competing Interests: Declarations. Compliance with Ethical Standards: The study has obtained the approval of the Ono Academic College’s Ethics Committee, as well as of the Ministry of Welfare and Social Affairs Ethics Committee, which supervises preparatory programs for young adults with disabilities in Israel. 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. 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; M age = 25); and 41 autistic adults were interviewed (22 male, 17 female, 2 non-binary; M age = 28). 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 autistic-driven recommendations for parental disclosure process. 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. Furthermore, they suggested focusing on how autism manifested in the child's own life, rather than "autism" in general. Finally, they recommended presenting autism as a neutral or positive quality, highlighting its strengths and networking the child with other autistic individuals. In conclusion, this study reveals that parental disclosure is an ongoing and spiral process. The proposed model contributes significantly to post-diagnostic support for parents, providing a framework for effective communication about autism with their children. (© 2024. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)
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Contributed Indexing:	Keywords: Diagnosis; Disclosure delay; Emancipatory research paradigm; Identity; Parental disclosure
Entry Date(s):	Date Created: 20240724 Date Completed: 20250927 Latest Revision: 20250927
Update Code:	20250927
DOI:	10.1007/s10803-024-06468-2
PMID:	39046685
Database:	MEDLINE

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Abstract:	Competing Interests: Declarations. Compliance with Ethical Standards: The study has obtained the approval of the Ono Academic College’s Ethics Committee, as well as of the Ministry of Welfare and Social Affairs Ethics Committee, which supervises preparatory programs for young adults with disabilities in Israel.<br />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. 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; M <subscript>age</subscript> = 25); and 41 autistic adults were interviewed (22 male, 17 female, 2 non-binary; M <subscript>age</subscript> = 28). 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 autistic-driven recommendations for parental disclosure process. 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. Furthermore, they suggested focusing on how autism manifested in the child's own life, rather than "autism" in general. Finally, they recommended presenting autism as a neutral or positive quality, highlighting its strengths and networking the child with other autistic individuals. In conclusion, this study reveals that parental disclosure is an ongoing and spiral process. The proposed model contributes significantly to post-diagnostic support for parents, providing a framework for effective communication about autism with their children.<br /> (© 2024. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)
ISSN:	1573-3432
DOI:	10.1007/s10803-024-06468-2