Abstract
As autism is an invisible and often stigmatised condition, disclosing the diagnosis may lead to both support and/or discrimination. This mixed-methods questionnaire study examined autistic adults’ experiences of disclosure in various contexts. The sample consisted of 393 participants aged 17–83 years from two longitudinal surveys. Almost all participants disclosed their diagnosis to someone, most commonly to friends. A significant minority of participants studying and/or working at the time had not disclosed to their education provider/employer. Content analysis of open-ended responses showed participants desired to gain understanding and support from disclosure but feared prejudice. While some received support, others encountered dismissiveness and misunderstanding. Findings highlight the need to improve autism understanding and reduce stigma within and beyond educational and employment contexts.
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Funding
This work was supported by the Cooperative Research Centre for Living with Autism (Autism CRC), established and supported under the Australian Government’s Cooperative Research Centres Program. The authors also acknowledge the financial support of the Australian Government Research Training Program.
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The study was first conceptualised by YIJH. YH, YIJH, SA, LL, AR, and JT contributed to the study’s design. Data analysis was performed by YH and YIJH. YH wrote the draft manuscript with input from all authors.
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This study was approved by UNSW Human Research Ethics Committee, HC15001, and La Trobe University Human Research Ethics Committee, HEC14-095.
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Participants capable of informed consent gave permission to be involved in the study and publication of de-identified data. Caregiver consent was provided for participants unable to provide their own consent.
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Huang, Y., Hwang, Y.I.(., Arnold, S.R.C. et al. Autistic Adults’ Experiences of Diagnosis Disclosure. J Autism Dev Disord 52, 5301–5307 (2022). https://doi.org/10.1007/s10803-021-05384-z
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DOI: https://doi.org/10.1007/s10803-021-05384-z