Item Details

‘Autism itself actually isn’t a disability’: Negotiating a ‘normal’ versus ‘abnormal’ autistic identity

Issue: Vol 11 No. 2 (2014)

Journal: Communication & Medicine

Subject Areas: Healthcare Communication Linguistics

DOI: 10.1558/cam.v11i2.20371

Abstract:

The opposing positions of the social model of disability and the biomedical framework of impairment have created tensions regarding what constitutes ‘normality’. In this article, we drew upon focus group data of parents, professionals, and people with autism, to explore how the dilemmatic tensions of normality and abnormality and of disability and ability were managed. Our findings illustrate how the boundaries of normality in relation to autism are blurred, as well as how the autistic identity is fluid. The members of the focus group invoked their epistemic rights to assert their positions and delicately considered the limitations of the rhetoric of cure. Our findings have implications for professionals working with families of children with autism, specifically as they aim to maintain a balance between providing sufficient support and not being intrusive, and we show how a medical sociology can facilitate an understanding of autism as a social category.

Author: Jessica Nina Lester, Khalid Karim, Michelle O'Reilly

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References :

American Psychiatric Association (2013) Diagnostic and Statistical Manual of Mental Disorders. Fifth edition [DSM-5]. Arlington, VA: American Psychiatric Publishing.


Avery, D. (1999) Talking ‘tragedy’: Identity issues in the parental story of disability. In M. Corker and S. French (eds) Disability Discourse, 116–126. Buckingham, UK: Open University.


Bailey, A. J. (2008) Autism as a global challenge. Autism Research 1: 145–146. http://dx.doi.org/10.1002/aur.28


Biklen, D., Attfield, R., Bissonnette, L., Blackman, L., Burke, J., Frugone, A., Mukhopadhyay, R. R. and Rubin, S. (2005) Autism and the Myth of the Person Alone. New York: New York University Press.


Bilić, B. and Georgaca, E. (2007) Representations of ‘mental illness’ in Serbian daily newspapers: A critical discourse approach. Qualitative Research in Psychology 4: 167–186. http://dx.doi.org/10.1080/14780880701473573


Billig, M., Condor, S., Edwards, D., Gane, M., Middleton, D. and Radley, A. (1988) Ideological Dilemmas: A Social Psychology of Everyday Thinking. London: Sage.


Broderick, A. (2009) Autism, ‘recovery (to normalcy)’, and the politics of hope. Intellectual and Developmental Disabilities 47 (4): 263–281. http://dx.doi.org/10.1352/1934-9556-47.4.263


Broderick, A. A. and Ne’eman, A. (2008) Autism as metaphor: Narrative and counter narrative. International Journal of Inclusive Education 12 (5–6): 459–476. http://dx.doi.org/10.1080/13603110802377490


Crowe, M. (2000) Constructing normality: A discourse analysis of the DSM-IV. Journal of Psychiatric and Mental Health Nursing 7 (1): 69–77. http://dx.doi.org/10.1046/j.1365-2850.2000.00261.x


Davies, B. and Harrè, R. (2001) Positioning: The discursive reproduction of selves. In M. Wetherell, S. Taylor and S. J. Yates (eds) Discourse Theory And Practice: A Reader, 261–171. London: Sage.


Dobbinson, S., Perkins, M. and Boucher, J. (1998) Structural patterns in conversations with a woman who has autism. Journal of Communication Disorders 31 (2): 113–134. http://dx.doi.org/10.1016/S0021-9924(97)00085-3


Eyal, G., Hart, B., Onculer, E., Oren, N. and Ross, N. (2010) The Autism Matrix: The Social Origins of the Autism Epidemic. Cambridge: Polity Press.


Frances, A. and Nardo, J. (2013) ICD-11 should not repeat the mistakes made by DSM-5. The British Journal of Psychiatry 203: 1–2. http://dx.doi.org/10.1192/bjp.bp.113.127647


Frith, U. (1989) Autism: Explaining the Enigma. Cambridge, MA: Blackwell Publishers


Glynne-Owen, R. (2010) Early intervention and autism: The impact of positivism and the call for change. International Journal of Children’s Rights 18 (3): 405–416. http://dx.doi.org/10.1163/157181810X497431


Goffman, E. (1967) Interaction Ritual: Essays on Face-To-Face Behavior. New York: Anchor Books.


Harper, D. (1995) Discourse analysis and ‘mental health’. Journal of Mental Health 4 (4): 347–357. http://dx.doi.org/10.1080/09638239550037406


Heritage, J. (2012) Epistemics in action: Action formation and territories of knowledge. Research on Language and Social Interaction 45 (1): 1–29. http://dx.doi.org/10.1080/08351813.2012.646684


Heritage, J. (2013) Action formation and its epistemic (and other) backgrounds. Discourse Studies 15 (5): 551–578. http://dx.doi.org/10.1177/1461445613501449


Heritage, J. and Raymond, G. (2005) The terms of agreement: Indexing epistemic authority and subordination in talk-in-interaction. Social Psychology Quarterly 68 (1): 15–38. http://dx.doi.org/10.1177/019027250506800103


Horton-Salway, M. (2004) The local production of knowledge: Disease labels, identities and category entitlements in ME support group talk. Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine 8 (3): 351–371. http://dx.doi.org/10.1177/1363459304043474


Jefferson, G. (1979) A technique for inviting laughter and its subsequent acceptance declination. In G. Psathas (ed.) Everyday Language: Studies in Ethnomethodology, 79–96. New York: Irvington Publishers.


Jefferson, G. (1984) On the organisation of laughter in talk about troubles. In J. M. Atkinson and J. Heritage (eds) Structures of Social action: Studies in Conversation Analysis, 346–369. Cambridge: Cambridge University Press.


Jefferson, G. (2004) Glossary of transcript symbols with an introduction. In G. H. Lerner (ed.) Conversation Analysis: Studies from the First Generation, 13–31. Amsterdam: John Benjamins.


Jutel, A. (2009) Sociology of diagnosis: A preliminary review. Sociology of Health and Illness 31 (2): 278–299. http://dx.doi.org/10.1111/j.1467-9566.2008.01152.x


Kanner, L. (1949) Problems of nosology and psychodynamics in early childhood autism. American Journal of Orthopsychiatry 19 (3): 416–426. http://dx.doi.org/10.1111/j.1939-0025.1949.tb05441.x


Kapp, S. (2011) Navajo and autism: The beauty of harmony. Disability and Society 26 (5): 583–595. http://dx.doi.org/10.1080/09687599.2011.589192


Karim, K., Cook, L. and O’Reilly, M. (2014) Diagnosing autistic spectrum disorder in the age of austerity. Child: Care, Health and Development 40 (1): 115–123. http://dx.doi.org/10.1111/j.1365-2214.2012.01410.x


Lester, J. and Paulus, T. (2012) Performative acts of autism. Discourse & Society 23 (3): 259–273. http://dx.doi.org/10.1177/0957926511433457


Maurice, C. (1993) Let Me Hear Your Voice. New York: Knopf.


Nadesan, M. H. (2005) Constructing Autism: Unraveling the ‘Truth’ and Understanding the Social. Abingdon, UK: Routledge.


Nauert, R. (2011) Viewing autism as difference, not just a disability. PsychCentral. Retrieved from http://psychcentral.com/news/2011/11/04/viewing-autism-as-difference-not-just-disability/31091.html


Oliver, M. (1996) Defining impairment and disability: Issues at stake. In C. Barnes and G. Mercer (eds) Exploring the Divide: Illness and Disability, 29–54. Leeds, UK: The Disability Press.


O’Reilly, M., Taylor, H. and Vostanis, P. (2009) ‘Nuts, schiz, psycho’: An exploration of young homeless people’s perceptions and dilemmas of defining mental health. Social Science and Medicine 68 (9): 1737–1744. http://dx.doi.org/10.1016/j.socscimed.2009.02.033


Osteen, M. (2008) Autism and representation: A comprehensive introduction. In M. Osteen (ed.) Autism and Representation, 1–47. Abingdon, UK: Routledge.


Pilgrim, D. (2002) The biopsychosocial model in Anglo-American psychiatry: Past, present and future. Journal of Mental Health 11 (6): 585–594. http://dx.doi.org/10.1080/09638230020023930


Potter J (1996) Representing Reality: Discourse, Rhetoric and Social Construction. London: Sage. http://dx.doi.org/10.4135/9781446222119


Potter, J. (1997) Discourse analysis as a way of analysing naturally occurring talk. In D. Silverman (ed.) Qualitative Research: Theory, Method And Practice, 144–160. London: Sage.


Potter, J. and Wetherell, M. (1987) Discourse and Social Psychology. London: Sage.


Ramanathan, V. (2010) Introduction to thematic issue: Language, policies and health. Language Policy 9 (1): 1–7. http://dx.doi.org/10.1007/s10993-009-9154-7


Reynolds, J. and Wetherell, M. (2003) The discursive climate of singleness: The consequences for women’s negotiation of a single identity. Feminism and Psychology 13: 489–510. http://dx.doi.org/10.1177/09593535030134014


Sacks, H. (1992). Lectures on Conversation. Oxford: Blackwell.


Santrock, J. W. (2007) A Topical Approach to Human Life-Span Development. Third edition. St Louis, MO: McGraw-Hill.


Sarangi, S. (2001) Expert and lay formulation of ‘normality’ in genetic counselling. Bulletin Suisse de Linguistique Appliquee 74: 109–127.


Sarangi, S. (2007) Editorial. Communication & Medicine 4 (1): 1–2.


Siebers, T. (2008) Disability Theory. Ann Arbor: University of Michigan Press.


Solomon, O. (2011) Body in autism: A view from social interaction. In P. McPherron and V. Ramanathan (eds) Language, Body and Health, 105–144. Berlin: Walter de Gruyter.


Stribling, P., Rae, J., Dickerson, P. and Dautenhahn, K. (2006) ‘Spelling it out’: The design, delivery, and placement of delayed echolalic utterances by a child with an autistic spectrum disorder. Issues in Applied Linguistics 15: 3–32.


Thomas, C. (2004) How is disability understood? An examination of sociological approaches. Disability & Society 19 (6): 569–583. http://dx.doi.org/10.1080/0968759042000252506


Wiklund, M. (2012) Gaze behavior of pre-adolescent children afflicted with Asperger syndrome. Communication & Medicine 9 (2): 173–186.


Wolfensberger, W. (1972) Normalization: The Principle of Normalization In Human Services. Toronto: National Institute of Mental Retardation and the Canadian Association for the Mentally Retarded.


World Health Organization. (2010) International Statistical Classification of Diseases and Related Health Problems. Tenth edition [ICD-10]. Retrieved from http://apps.who.int/classifications/icd10/browse/2010/en


Wykes, T. and Callard, F. (2010) Diagnosis, diagnosis, diagnosis: Towards DSM-5. Journal of Mental Health 19 (4): 301–304. http://dx.doi.org/10.3109/09638237.2010.494189