Top

Journal of Autism and Developmental Disorders

Gepubliceerd in:

11-11-2019 | Original Paper

‘Coming Out’ with Autism: Identity in People with an Asperger’s Diagnosis After DSM-5

Auteurs: Olivia Smith, Sandra C. Jones

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 2/2020

Abstract

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.

vorige artikel Understanding Number Line Estimation in Williams Syndrome and Down Syndrome

volgende artikel Impaired P1 Habituation and Mismatch Negativity in Children with Autism Spectrum Disorder

The second author is an autistic woman with a broad network of friends and colleagues in the autism community.

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

Asperger, H. (1991). “Autistic psychopathy” in childhood. In U. Frith (Ed.), Autism and asperger syndrome (pp. 37–92). Cambridge: Cambridge University Press.CrossRef

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=

Barahona-Correa, J. B., & Filipe, C. N. (2015). A concise history of Asperger Syndrome: The short reign of a troublesome diagnosis. Frontiers in Psychology,6, 2024. https://doi.org/10.3389/fpsyg.2015.02024.CrossRefPubMed

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/

Bourgeault, I., Dingwall, R., & De Vries, R. (2010). The SAGE handbook of qualitative methods in health research. London: SAGE Publications Inc.CrossRef

Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology,3, 77–101. https://doi.org/10.1186/2040-2392-4-11.CrossRef

Carmack, H. J. (2014). Social and tertiary health identities as argument in the DSM-V Asperger’s/autism debate. Western Journal of Communication,78, 462–479. https://doi.org/10.1080/10570314.2013.845792.CrossRef

Chambers, B., Murray, C. M., Boden, Z. V. R., & Kelly, M. P. (2019). ‘Sometimes labels need to exist’: Exploring how young adults with Asperger’s syndrome perceive its. Disability & Society.. https://doi.org/10.1080/09687599.2019.1649121.CrossRef

Colman, A. M. (2014). Autistic disorder. In J. P. Chaplin (Ed.), A dictionary of psychology (3rd ed.). New York: Laurel.

Connor, D. J. (2013). Kiss my Asperger’s: Turning the tables of knowledge. Journal of Inclusive Education,17, 111–129. https://doi.org/10.1080/13603116.2011.605911.CrossRef

Cooper, K., Smith, L. G. E., & Russell, A. (2017). Social identity, self-esteem, and mental health in autism. European Journal of Social Psychology,47, 844–854. https://doi.org/10.1002/ejsp.2297.CrossRef

Darling, R. B. (2003). Toward a model of changing disability identities: A proposed typology and research agenda. Disability & Society,18, 881–895. https://doi.org/10.1080/0968759032000127308.CrossRef

Darling, R. B., & Heckert, D. A. (2010). Orientations toward disability: Differences over the lifecourse. International Journal of Disability, Development and Education,57, 131–143. https://doi.org/10.1080/10349121003750489.CrossRef

Dunn, D. S., & Andrews, E. E. (2015). Person-first and identity-first language: Developing psychologists’ cultural competence using disability language. American Psychologist,70, 255–264. https://doi.org/10.1037/a0038636.CrossRefPubMed

Dunn, D., & Burcaw, S. (2013). Disability identity: Exploring narrative accounts of disability. Rehabilitation Psychology,58, 148–157. https://doi.org/10.1037/0031691.CrossRefPubMed

Fein, D., Barton, M., Eigsti, I.-M., Kelley, E., Naigles, L., Schulz, R., … Tyson, K. (2013). Optimal outcome in individuals with a history of autism. Journal of Child Psychology and Psychiatry, 54, 195–205. https://doi.org/10.1111/jcpp.12037

Forber-Pratt, A. J., Lyew, D., Mueller, C., & Samples, L. B. (2017). Disability identity development: A systematic review of the literature. Rehabilitation Psychology,62, 198–207. https://doi.org/10.1037/rep0000134.CrossRefPubMed

Forber-Pratt, A. J., & Zape, M. P. (2017). Disability identity development model: Voices from the ADA-generation. Disability and Health Journal,10, 350–355. https://doi.org/10.1016/j.dhjo.2016.12.013.CrossRefPubMed

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

Gernsbacher, M. A. (2017). Editorial perspective: The use of person-first language in scholarly writing may accentuate stigma. The Journal of Child Psychology and Psychiatry,58, 859–861. https://doi.org/10.1111/jcpp.12706.CrossRefPubMed

Ghaziuddin, M. (2008). Defining the behavioral phenotype of Asperger Syndrome. Journal of Autism and Developmental Disorders,38, 138–142. https://doi.org/10.1007/s10803-007-0371-7.CrossRefPubMed

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.CrossRef

Gill, C. J. (1997). Four types of integration in disability identity development. Journal of Vocational Rehabilitation,9, 39–46. https://doi.org/10.1016/S1052-2263(97)00020-2.CrossRef

Hammack, P. (2008). Narrative and the cultural psychology of identity. Personality and Social Psychology Review,12, 222–247. https://doi.org/10.1177/1088868308316892.CrossRefPubMed

Highet, G. (2003). Cannabis and smoking research: Interviewing young people in self-selected friendship pairs. Health Education Research,18, 108–118. https://doi.org/10.1093/her/18.1.108.CrossRefPubMed

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.CrossRefPubMedPubMedCentral

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

Kapp, S. K., Gillespie-Lynch, K., Sherman, L. E., & Hutman, T. (2013). Deficit, difference or both? Autism and neurodiversity. Developmental Psychology,49, 59–71. https://doi.org/10.1037/a0028353.CrossRefPubMed

Kenny, L., Hattersley, C., Molins, B., Buckley, C., Povey, C., & Pellicano, E. (2016). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism,20, 442–462. https://doi.org/10.1177/1362361315588200.CrossRefPubMed

Kite, D. M., Gullifer, J., & Tyson, G. A. (2013). Views on the diagnostic labels of autism and Asperger’s disorder and the proposed changes in the DSM. Journal of Autism and Developmental Disorders,43, 1692–1700. https://doi.org/10.1007/s10803-012-1718-2.CrossRefPubMed

Linton, K. (2014). Clinical diagnoses exacerbate stigma and improve self-discovery according to people with autism. Social Work in Mental Health,12, 330–342. https://doi.org/10.1080/15332985.2013.861383.CrossRef

Linton, K. F., Krcek, T. E., Sensui, L. M., & Spillers, J. L. H. (2014). Opinions of people who self-identify with autism and Asperger’s on DSM-5 criteria. Research on Social Work Practice,24, 67–77. https://doi.org/10.1177/1049731513495457.CrossRef

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

Matson, J., Hattier, M., & Williams, L. (2012). How does relaxing the algorithm for autism affect DSM-V prevalence rates? Journal of Autism and Developmental Disorders,42, 1549–1556. https://doi.org/10.1007/s10803-012-1582-0.CrossRefPubMed

McDonald, T. A. M. (2017). Discriminative and criterion validity of the autism spectrum identity scale (ASIS). Journal of Autism and Developmental Disorders,47, 3018–3028. https://doi.org/10.1007/s10803-017-3221-2.CrossRefPubMed

Milton, D., & Sims, T. (2016). How is a sense of well-being and belonging constructed in the accounts of autistic adults? Disability and Society,31, 520–534. https://doi.org/10.1080/09687599.2016.1186529.CrossRef

Mogensen, L., & Mason, J. (2015). The meaning of a label for teenagers negotiating identity: Experiences with autism spectrum disorder. Sociology of Health & Illness,37, 255–269. https://doi.org/10.1111/1467-9566.12208.CrossRef

Nario-Redmond, M. R., Noel, J. G., & Fern, E. (2013). Redefining disability, re-imagining the self: Disability identification predicts self-esteem and strategic responses to stigma. Self and Identity,12, 468–488. https://doi.org/10.1080/15298868.2012.681118.CrossRef

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.CrossRefPubMed

Parsloe, S. M., & Babrow, A. S. (2016). Removal of Asperger’s syndrome from the DSM V: Community response to uncertainty. Health Communication,31, 485–494. https://doi.org/10.1080/10410236.2014.968828.CrossRefPubMed

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.

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.CrossRef

Smith, I., Reichow, B., & Volkmar, F. (2015). The Effects of DSM-5 criteria on number of individuals diagnosed with autism spectrum disorder: A systematic review. Journal of Autism and Developmental Disorders,45, 2541–2542. https://doi.org/10.1007/s10803-015-2423-8.CrossRefPubMed

Spillers, J. L. H., Sensui, L. M., & Linton, K. F. (2014). Concerns about identity and services among people wtih autism and Asperger’s regarding DSM-5 changes. Social Work in Disability & Rehabilitation,13, 247–260. https://doi.org/10.1080/1536710X.2014.912186.CrossRef

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.

Vroom, C. (2013). The end of Asperger’s: An analysis of the decision to remove Asperger’s Disorder from the DSM-5. SFU Education Review. https://doi.org/10.21810/sfuer.v6i.365.CrossRef

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

Titel: ‘Coming Out’ with Autism: Identity in People with an Asperger’s Diagnosis After DSM-5
Auteurs: Olivia Smith
Sandra C. Jones
Publicatiedatum: 11-11-2019
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders / Uitgave 2/2020
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-019-04294-5

Andere artikelen Uitgave 2/2020

Brief Report: Me, Reporting on Myself: Preliminary Evaluation of the Criterion-Related Validity of the Theory of Mind Inventory-2 when Completed by Autistic Young Adults

Brief Report

Numerous Confounders Affecting the Alleged Association Between Cesarean Deliveries Under General Anesthesia and Autism Spectrum Disorder

Letter to the Editor

Comparing the Psychometric Properties of the Self- and Parent-Report Versions of Autism-Spectrum Quotient-Adult in Hong Kong (AQ-Adult-HK)

Original Paper

Ask the Editor: What is the Most Appropriate Way to Talk About Individuals with a Diagnosis of Autism?

Ask the Expert

Exploring the Moderating Role of Benefit Finding on the Relationship Between Child Problematic Behaviours and Psychological Distress in Caregivers of Children with ASD

Original Paper

Impaired P1 Habituation and Mismatch Negativity in Children with Autism Spectrum Disorder

Original Paper