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Journal of Autism and Developmental Disorders

Gepubliceerd in:

03-01-2022 | Original Paper

Autistic Adults’ Experiences of Diagnosis Disclosure

Auteurs: Yunhe Huang, Ye In (Jane) Hwang, Samuel R. C. Arnold, Lauren P. Lawson, Amanda L. Richdale, Julian N. Trollor

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 12/2022

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.

vorige artikel A Parent-Mediated Telehealth Program for Children with Autism Spectrum Disorder

volgende artikel Defining in Detail and Evaluating Reliability of DSM-5 Criteria for Autism Spectrum Disorder (ASD) Among Children

Anderson, A. H., Carter, M., & Stephenson, J. (2018). Perspectives of university students with autism spectrum disorder. Journal of Autism and Developmental Disorders, 48(3), 651–665. https://doi.org/10.1007/s10803-017-3257-3CrossRefPubMed

Arnold, S. R. C., Foley, K.-R., Hwang, Y.-I., Richdale, A. L., Uljarevic, M., Lawson, L. P., Cai, R. Y., Falkmer, T., Falkmer, M., Lennox, N. G., Urbanowicz, A., & Trollor, J. (2019). Cohort profile: The Australian Longitudinal Study of Adults with Autism (ALSAA). BMJ Open, 9(12), e030798. https://doi.org/10.1136/bmjopen-2019-030798CrossRefPubMedPubMedCentral

Australian Bureau of Statistics. (2019). 1249.0 - Australian Standard Classification of Cultural and Ethnic Groups (ASCCEG), 2019. ABS Website. Retrieved 24 March 2021 from https://www.abs.gov.au/AUSSTATS/abs@.nsf/productsbyCatalogue/EA62034F32E23CFACA2570AF00437695

Baldwin, S., Costley, D., & Warren, A. (2014). Employment activities and experiences of adults with high-functioning autism and Asperger’s disorder. Journal of Autism and Developmental Disorders, 44(10), 2440–2449. https://doi.org/10.1007/s10803-014-2112-zCrossRefPubMed

Cai, R. Y., & Richdale, A. L. (2016). Educational experiences and needs of higher education students with autism spectrum disorder. Journal of Autism and Developmental Disorders, 46(1), 31–41. https://doi.org/10.1007/s10803-015-2535-1CrossRefPubMed

Creswell, J. W., & Plano Clark, V. L. (2007). Designing and conducting mixed method research. Sage Publications, Inc.

Davidson, J., & Henderson, V. L. (2010). ‘Coming out’ on the spectrum: Autism, identity and disclosure. Social & Cultural Geography, 11(2), 155–170. https://doi.org/10.1080/14649360903525240CrossRef

Flower, R. L., Lawson, L. P., Haschek, A., Cai, R. Y., Uljarevic, M., & Richdale, A. L. (2021). Health status and service use of transition-age autistic youth in Australia: The Study of Australian school leavers with autism (SASLA) [Manuscript submitted for publication]. Olga Tennison Autism Research Centre, La Trobe University.

Harper, D. (2012). Choosing a qualitative research method. In D. Harper & A. R. Thompson (Eds.), Qualitative research methods in mental health and psychotherapy: A guide for students and practitioners (1st ed., pp. 84–97). Wiley

Hoekstra, R. A., Vinkhuyzen, A. A. E., Wheelwright, S., Bartels, M., Boomsma, D. I., Baron-Cohen, S., Posthuma, D., & van der Sluis, S. (2011). The construction and validation of an abridged version of the Autism-spectrum Quotient (AQ-Short). Journal of Autism and Developmental Disorders, 41(5), 589–596. https://doi.org/10.1007/s10803-010-1073-0CrossRefPubMed

Johnson, T. D., & Joshi, A. (2016). Dark clouds or silver linings? A stigma threat perspective on the implications of an autism diagnosis for workplace well-being. Journal of Applied Psychology, 101(3), 430–449. https://doi.org/10.1037/apl0000058CrossRefPubMed

Knott, F., & Taylor, A. (2014). Life at university with Asperger syndrome: A comparison of student and staff perspectives. International Journal of Inclusive Education, 18(4), 411–426. https://doi.org/10.1080/13603116.2013.781236CrossRef

Lai, M.-C., & Baron-Cohen, S. (2015). Identifying the lost generation of adults with autism spectrum conditions. Lancet Psychiatry, 2(11), 1013–1027. https://doi.org/10.1016/S2215-0366(15)00277-1CrossRefPubMed

Lewis, L. F. (2017). “We will never be normal”: The experience of discovering a partner has autism spectrum disorder. Journal of Marital and Family Therapy, 43(4), 631–643. https://doi.org/10.1111/jmft.12231CrossRefPubMed

Nuske, A., Rillotta, F., Bellon, M., & Richdale, A. (2019). Transition to higher education for students with autism: A systematic literature review. Journal of Diversity in Higher Education, 12(3), 280–295. https://doi.org/10.1037/dhe0000108CrossRef

QSR International. (2018). Coding comparison query. NVivo 12. Retrieved 27 Jan 2021 from https://help-nv.qsrinternational.com/12/win/v12.1.97-d3ea61/Content/queries/coding-comparison-query.htm

Romualdez, A. M., Heasman, B., Walker, Z., Davies, J., & Remington, A. (2021). “People might understand me better”: Diagnostic disclosure experiences of autistic individuals in the workplace. Autism in Adulthood. https://doi.org/10.1089/aut.2020.0063CrossRef

Solovieva, T. I., Dowler, D. L., & Walls, R. T. (2011). Employer benefits from making workplace accommodations. Disability and Health Journal, 4(1), 39–45. https://doi.org/10.1016/j.dhjo.2010.03.001CrossRefPubMed

Tan, C. D. (2018). “I’m a normal autistic person, not an abnormal neurotypical”: Autism Spectrum Disorder diagnosis as biographical illumination. Social Science & Medicine, 197, 161–167. https://doi.org/10.1016/j.socscimed.2017.12.008CrossRef

Thompson-Hodgetts, S., Labonte, C., Mazumder, R., & Phelan, S. (2020). Helpful or harmful? A scoping review of perceptions and outcomes of autism diagnostic disclosure to others. Research in Autism Spectrum Disorders. https://doi.org/10.1016/j.rasd.2020.101598CrossRef

Van Hees, V., Moyson, T., & Roeyers, H. (2015). Higher education experiences of students with autism spectrum disorder: Challenges, benefits and support needs. Journal of Autism and Developmental Disorders, 45(6), 1673–1688. https://doi.org/10.1007/s10803-014-2324-2CrossRefPubMed

Wood-Downie, H., Wong, B., Kovshoff, H., Cortese, S., & Hadwin, J. A. (2021). Research review: A systematic review and meta-analysis of sex/gender differences in social interaction and communication in autistic and nonautistic children and adolescents. Journal of Child Psychology and Psychiatry, 62(8), 922–936. https://doi.org/10.1111/jcpp.13337CrossRefPubMed

Titel: Autistic Adults’ Experiences of Diagnosis Disclosure
Auteurs: Yunhe Huang
Ye In (Jane) Hwang
Samuel R. C. Arnold
Lauren P. Lawson
Amanda L. Richdale
Julian N. Trollor
Publicatiedatum: 03-01-2022
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders / Uitgave 12/2022
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-021-05384-z

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