‘Coming Out’ with Autism: Identity in People with an Asperger’s Diagnosis After DSM-5
Asperger’s Syndrome was introduced as a separate diagnostic category in the DSM-4 (1994). Its subsequent absorption into autism spectrum disorder in the DSM-5 (2013) led to vigorous debate and concerns about the loss of the unique Asperger’s identity. Existing research has identified that adults previously diagnosed with Asperger’s have expressed a diverse range of opinions regarding the DSM-5 changes. This Australian study explored the role of disability identity development in responses to the change through semi-structured interviews with 12 adults diagnosed with Asperger’s under the DSM-4. Their different views did not appear to be a function of demographic variables; a connection was identified between participants’ views of the change and differing stages of integration with the Asperger’s and/or autism identities.
KeywordsAsperger’s DSM-5 Identity Diagnostic category
The authors thank Dr David Kirchhoffer, Director of the Queensland Bioethics Centre at Australian Catholic University for his input and advice throughout the study and in the preparation of the manuscript. We also thank the 12 individuals who gave their time and shared their personal journeys with us.
Compliance with Ethical Standards
Conflict of interest
The authors declare that they have no conflict of interest. The second author is an autistic woman and the mother of two adult autistic sons; we acknowledge that this may influence the positioning of the research, but we see this as a benefit rather than a conflict.
All procedures performed in studies involving human participants were in accordance with the ethical standards of Australian Catholic University Human Research Ethics Committee (reference number: 2016-248H) and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
Informed consent was obtained from all individual participants included in the study.
- American Psychiatric Association. (2013). DSM-5 Autism Spectrum Disorder Fact Sheet. Retrieved March 10, 2019, from www.dsm5.org/Documents/Autism%20Spectrum%20Disorder%20Fact%20Sheet.pdf
- Australian Bureau of Statistics. (2014). Autism in Australia, 2012 (No. 4428.0). Retrieved from Australian Bureau of Statistics website: http://www.abs.gov.au/AUSSTATS/abs@.nsf/Latestproducts/4428.0Main%20Features12012?opendocument&tabname=Summary&prodno=4428.0&issue=2012&num=&view=
- Barnett, N. A. (2014). The process of diagnosis delivery of autism spectrum disorders (University of New Mexico). Retrieved from https://search-proquest-com.ezproxy1.acu.edu.au/docview/1656169536/
- Colman, A. M. (2014). Autistic disorder. In J. P. Chaplin (Ed.), A dictionary of psychology (3rd ed.). New York: Laurel.Google Scholar
- Fusco, G. (2014). Perceptions of the shift in Asperger’s Syndrome nosology in DSM-5. Retrieved from http://ezproxy.acu.edu.au/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=psyh&AN=2014-99140-099&site=ehost-live
- Giles, D. C. (2014). “DSM-V is taking away our identity”: The reaction of the online community to the proposed changes in the diagnosis of Asperger’s disorder. Health: An Interdisciplinary Journal for the Social Study of Health. Illness and Medicine,18, 179–195. https://doi.org/10.1177/1363459313488006.CrossRefGoogle Scholar
- Hull, L., Petrides, K. V., Allison, C., Smith, P., Baron-Cohen, S., Lai, M.-C., et al. (2017). “Putting on my best normal”: Social camouflaging in adults with autism spectrum conditions. Journal of Autism and Developmental Disorders,47, 2519–2534. https://doi.org/10.1007/s10803-017-3166-5.CrossRefPubMedPubMedCentralGoogle Scholar
- Jones, S. (2019). We need to stop perpetuating the myth that children grow out of autism. The Conversation. Retrieved October 20, 2019, from https://theconversation.com/we-need-to-stop-perpetuating-the-myth-that-children-grow-out-of-autism-119540
- Marco, P. F. (2010). Disclosing a diagnosis of autism spectrum disorder to parents: Guidelines for professionals (Massachusetts School of Professional Psychology). Retrieved July 8, 219, from https://search-proquest-com.ezproxy1.acu.edu.au/docview/734659283
- Ohan, J. L., Ellefson, S. E., & Corrigan, P. W. (2015). Brief report: The impact of changing from DSM-IV “Asperger’s” to DSM-5 “autistic spectrum disorder” diagnostic labels on stigma and treatment attitudes. Journal of Autism and Developmental Disorders,45, 3384–3389. https://doi.org/10.1007/s10803-015-2485-7.CrossRefPubMedGoogle Scholar
- Plank, A. (2013). WrongPlanet.net: The online resource and community for autism and Asperger’s. Retrieved April 12, 2019, from www.wrongplanet.net/forums.html
- Ryan, R. M., & Deci, E. L. (2014). Multiple identities within a single self. In M. R. Leary & J. P. Tangney (Eds.), Handbook of self and identity (2nd ed., pp. 224–246). New York: The Guilford Press.Google Scholar
- Singh, J. S. (2011). The vanishing diagnosis of Asperger’s disorder. Sociology of Diagnosis,12, 235–257. https://doi.org/10.1108/S1057-6290(2011)0000012015.CrossRefGoogle Scholar
- Tajfel, H., & Turner, J. (1979). An integrative theory of intergroup conflict. The social psychology of intergroup relations (pp. 33–47). Monterey, CA: Brooks/Cole Publishing Co.Google Scholar
- Weeber, J. E. (2004). Disability community leaders’ disability identity development: A journey of integration and expansion (North Carolina State University). Retrieved April 14, 2019, from https://search-proquest-com.ezproxy1.acu.edu.au/docview/305166629
- World Health Organisation. (2015). F84.5 Asperger syndrome. In ICD-10 Version: 2015. Retrieved October 18, 2019, from https://icd.who.int/browse10/2015/en#/F84.
- World Health Organisation. (2018). WHO releases new International Classification of Diseases (ICD11). Retrieved October 18, 2019, from https://www.who.int/news-room/detail/18-06-2018-who-releases-new-international-classification-of-diseases-(icd-11)
- World Health Organisation. (2019). 6A02 Autism spectrum disorder. In ICD-11 for Mortality and Morbidity Statistics. Retrieved October 18, 2019, from https://icd.who.int/browse11/l-m/en