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.
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The second author is an autistic woman with a broad network of friends and colleagues in the autism community.
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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.
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.
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Smith, O., Jones, S.C. ‘Coming Out’ with Autism: Identity in People with an Asperger’s Diagnosis After DSM-5. J Autism Dev Disord 50, 592–602 (2020). https://doi.org/10.1007/s10803-019-04294-5