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

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 p...

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Publicado en:Journal of Autism & Developmental Disorders Vol. 55; no. 10; pp. 3647 - 3662
Autores principales: Almog, Nitsan, Keren, Einat Haya, Gabai, Tamir, Kassel, Orit
Formato: research tables/charts Journal Article
Publicado: Springer Nature Oct2025
Acceso en línea:Ver este registro en EBSCOhost
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      dt: Oct2025
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      pub: Springer Nature
      place: New York, New York
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        atl: Autistic People's Perspectives on Parental Diagnosis Disclosure: A Grounded Theory Study.
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          Almog, Nitsan
          Keren, Einat Haya
          Gabai, Tamir
          Kassel, Orit
        affil: https://ror.org/02td5wn81 Disability Studies Program, Department of Education and Societal Studies, Ono Academic College, Kiryat Ono, Israel
      sug:
        subj:
          Autism Spectrum Disorder Diagnosis
          Parent-Child Relations
          Truth Disclosure
          Self Concept
          Patient Attitudes
          Parents Psychosocial Factors
          Human
          Male
          Female
          Adolescence
          Adult
          Middle Age
          Grounded Theory
          Focus Groups
          Interviews
          Social Identity
          Self-Advocacy
          Support, Social
          Community Health Services
          Communication
          Israel
          Qualitative Studies
          Trust
          Reliability
          Adolescent: 13-18 years
          Adult: 19-44 years
          Middle Aged: 45-64 years
          Male
          Female
      ab: 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; Mage = 25); and 41 autistic adults were interviewed (22 male, 17 female, 2 non-binary; Mage = 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.
      pubtype: Academic Journal
      doctype:
        research
        tables/charts
        Journal Article
      ougenre: Article
    language: English
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