Which terms should be used to describe autism? Perspectives from the UK autism community

First Published July 1, 2015 Research Article Find in PubMed

Authors

1
 
Centre for Research in Autism and Education, UCL Institute of Education, University College London, UK
by this author
, 23
 
The National Autistic Society, UK
 
Providence Row, UK
by this author
, 2
 
The National Autistic Society, UK
by this author
,
4
 
Royal College of General Practitioners, UK
by this author
, 2
 
The National Autistic Society, UK
by this author
, 15
 
Centre for Research in Autism and Education, UCL Institute of Education, University College London, UK
 
School of Psychology, University of Western Australia, Australia
by this author
...
First Published Online: July 1, 2015

Recent public discussions suggest that there is much disagreement about the way autism is and should be described. This study sought to elicit the views and preferences of UK autism community members – autistic people, parents and their broader support network – about the terms they use to describe autism. In all, 3470 UK residents responded to an online survey on their preferred ways of describing autism and their rationale for such preferences. The results clearly show that people use many terms to describe autism. The most highly endorsed terms were ‘autism’ and ‘on the autism spectrum’, and to a lesser extent, ‘autism spectrum disorder’, for which there was consensus across community groups. The groups disagreed, however, on the use of several terms. The term ‘autistic’ was endorsed by a large percentage of autistic adults, family members/friends and parents but by considerably fewer professionals; ‘person with autism’ was endorsed by almost half of professionals but by fewer autistic adults and parents. Qualitative analysis of an open-ended question revealed the reasons underlying respondents’ preferences. These findings demonstrate that there is no single way of describing autism that is universally accepted and preferred by the UK’s autism community and that some disagreements appear deeply entrenched.

APA (1987) Diagnostic and Statistical Manual of Mental Disorders. 3rd ed. Washington, DC: APA.
Google Scholar
APA (2013) Diagnostic and Statistical Manual of Mental Disorders. 5th ed. Washington, DC: APA.
Google Scholar
Bagatell, N (2010) From cure to community: transforming notions of autism. Journal of the Society for Psychological Anthropology 38: 3355.
Google Scholar
Bailey, D (1991) Guidelines for authors. Journal of Early Interventions 18: 118119.
Google Scholar
Baker, DL (2011) The Politics of Neurodiversity: Why Public Policy Matters. Boulder, CO: Lynne Rienner.
Google Scholar
Barnes, C, Mercer, G, Shakespeare, T (1999) Exploring Disability: A Sociological Introduction. Maldan, MA: Blackwell.
Google Scholar
Baron-Cohen, S (2000) Is Asperger syndrome/high-functioning autism necessarily a disability? Development and Psychopathology 12: 489500.
Google Scholar | Crossref | Medline | ISI
Baron-Cohen, S (2009) The short life of a diagnosis. The New York Times, 9 November. Available at: http://www.nytimes.com/2009/11/10/opinion/10baron-cohen.html?_r=0 (accessed 26 November 2014).
Google Scholar
Bettleheim, B (1967) The Empty Fortress: Infantile Autism and the Birth of the Self. New York: The Free Press.
Google Scholar
Blaska, J (1993) The power of language: speak and write using ‘person first’. In: Nagler, M (ed.) Perspectives on Disability. Palo Alto, CA: Health Markets Research, pp. 532.
Google Scholar
Bleuler, E (1911) Dementia praecox oder gruppe der schizophrenien Handbuch der Psychiatrie. Spezieller Teil. 4. Abteilung, 1.Hälfte. Leipzig und Wien: Franz Deuticke.
Google Scholar
Bölte, S, de Schipper, E, Robison, JE. (2014) Classification of functioning and impairment: the development of ICF core sets for autism spectrum disorder. Autism Research 7: 167172.
Google Scholar | Crossref | Medline | ISI
Bovell, V (2006) We don’t need to wipe out autism. We need to care more. Mail Online, 19 June. Available at: http://www.dailymail.co.uk/news/article-391318/We-dont-need-wipe-autism–need-care-more.html (accessed 9 October 2014).
Google Scholar
Braun, V, Clarke, V (2006) Using thematic analysis in psychology. Qualitative Research in Psychology 3: 77101.
Google Scholar | Crossref
Broderick, A, Ne’eman, A (2008) Autism as metaphor: narrative and counter-narrative. International Journal of Inclusive Education 12: 459476.
Google Scholar | Crossref | ISI
Brown, L (2011a) Identity and hypocrisy: a second argument against person-first language, 28 November. Available at http://www.autistichoya.com/2011/11/identity-and-hypocrisy-second-argument.html (accessed 27 November 2014).
Google Scholar
Brown, L (2011b) The significance of semantics: person-first language: why it matters, 4 August. Available at http://www.autistichoya.com/2011/08/significance-of-semantics-person-first.html (accessed 8 October 2014).
Google Scholar
Calzada, LR, Pistrang, N, Mandy, W (2012) High-functioning autism and Asperger’s disorder: utility and meaning for families. Journal of Autism and Developmental Disorders 42: 230243.
Google Scholar | Crossref | Medline | ISI
Chamak, B (2008) Autism and social movements: French parents’ associations and international autistic individuals’ organisations. Sociology of Health & Illness 30: 7696.
Google Scholar | Crossref | Medline | ISI
Charlton, J (1998) Nothing about Us without Us. Berkeley, CA; Los Angeles, CA; London: University of California Press.
Google Scholar | Crossref
Davidson, J, Henderson, VL (2010) ‘Coming out’ on the spectrum: autism, identity and disclosure. Social & Cultural Geography 11: 155170.
Google Scholar | Crossref | ISI
Dawson, M, Soulières, I, Gernsbacher, M. (2007) The level and nature of autistic intelligence. Psychological Science 18: 657662.
Google Scholar | SAGE Journals | ISI
Dekker, M (2011) Owning the languages of autism. Paper presented at the 2011 Autscape conference. Pontefract. Available at: http://www.autscape.org/2011/programme/presentations#dekker (accessed 5 January 2015).
Google Scholar
Durbin-Westby, PC (2009) IACC comments: November 10, 2009. 10 November. Available at http://paulacdurbinwestbyautisticblog.blogspot.co.uk/2009/11/iacc-comments-november-10-2009.html (accessed 27 November 2014).
Google Scholar
Feldman, D, Gordon, PA, White, MJ. (2002) The effects of people-first language and demographic variables on beliefs, attitudes, and behavioral intentions toward people with disabilities. Journal of Applied Rehabilitation Counseling 33: 1825.
Google Scholar | Crossref
Foreman, P (2005) Language and disability. Journal of Intellectual and Developmental Disability 30: 5759.
Google Scholar | Crossref | ISI
Froschl, M, Colon, L, Rubin, E. (1984) Including All of Us: An Early Childhood Curriculum about Disability. New York: Educational Equity Concepts, Inc.
Google Scholar
Gilmour, L, Schalomon, M, Smith, V (2012) Sexuality in a community based sample of adults with autism spectrum. Research in Autism Spectrum Disorders 6: 313318.
Google Scholar | Crossref | ISI
Goffman, E (1963) Stigma: Notes on the Management of Spoiled Identity. Englewood Cliffs, NJ: Prentice Hall.
Google Scholar
Grzadzinski, R, Huerta, M, Lord, C (2013) DSM-5 and autism spectrum disorders (ASDs): an opportunity for identifying ASD subtypes. Molecular Autism 4: 12.
Google Scholar | Crossref | Medline | ISI
Halmari, H (2011) Political correctness, euphemism, and language change: the case of ‘people first. Journal of Pragmatics 43: 828840.
Google Scholar | Crossref | ISI
Hassall, R, Rose, J, McDonald, J (2005) Parenting stress in mothers of children with an intellectual disability: the effects of parental cognitions in relation to child characteristics and family support. Journal of Intellectual Disability Research 49: 405418.
Google Scholar | Crossref | Medline | ISI
Howlin, P, Goode, S, Hutton, J. (2004) Adult outcome for children with autism. Journal of Child Psychology and Psychiatry 45: 212229.
Google Scholar | Crossref | Medline | ISI
Humphrey, N, Lewis, S (2008) ‘Make me normal’: the views of and experiences of pupils on the autistic spectrum in mainstream secondary school. Autism 12: 2346.
Google Scholar | SAGE Journals | ISI
Hurlburt, K, Chalmers, L (2002) Adults with autism speak out: perceptions of their life experiences. Focus on Autism and other Developmental Disabilities 17: 103111.
Google Scholar | SAGE Journals
Ingersoll, B, Hambrick, DZ (2011) The relationship between the broader autism phenotype, child severity, and stress and depression in parents of children with autism spectrum disorders. Research in Autism Spectrum Disorders 5: 337344.
Google Scholar | Crossref | ISI
Insel, TR (2011) Autism research: goals, priorities, and advances. [Powerpoint slides]. Retrieved from: https://iacc.hhs.gov/events/2011/slides_thomas_insel_050411.pdf
Google Scholar
Kanner, L (1943) Autistic disturbances of affective contact. Nervous Child 2: 217250.
Google Scholar
Kanner, L (1949) Problems of nosology and psychodynamics in early childhood autism. American Journal of Orthopsychiatry 19: 416426.
Google Scholar | Crossref | Medline | ISI
Kapp, SK, Gillespie-Lynch, K, Sherman, LE. (2012) Deficit, difference, or both? Autism and neurodiversity. Developmental Psychology 49(1): 113.
Google Scholar | ISI
Kim, C (2014) The logical fallacy of person first language, 18 June. Available at: http://musingsofanaspie.com/2014/06/18/the-logical-fallacy-of-person-first-language/ (accessed 27 November 2014).
Google Scholar
King, GA, Zwaigenbaum, L, King, S. (2006) A qualitative investigation of changes in the belief systems of families of children with autism or Down syndrome. Child: Care, Health & Development 32: 353369.
Google Scholar | Crossref | Medline | ISI
Kite, D, Gullifer, J, Tyson, G (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: 16921700.
Google Scholar | Crossref | Medline | ISI
Ladd, P (2003) Understanding Deaf Culture: In Search of Deafhood. Clevedon: Multilingual Matters.
Google Scholar | Crossref
Lai, M-C, Lombardo, MV, Chakrabarti, B. (2013) Subgrouping the autism ‘spectrum’: reflections on DSM-5. PLoS Biology 11: e1001544.
Google Scholar | Crossref | Medline | ISI
Lane, H (2000) The Mask of Benevolence: Disabling the Deaf Community. San Diego, CA: Dawn Sign Press.
Google Scholar
Langan, M (2011) Parental voices and controversies in autism. Disability & Society 26: 193205.
Google Scholar | Crossref | ISI
Lee, P (1997) Language in thinking and learning: pedagogy and the new Whorfian framework. Harvard Educational Review 67: 430472.
Google Scholar | Crossref | ISI
Linton, KF, Krcek, TE, Sensui, LM. (2014) Opinions of people who self-identify with autism and Asperger’s on DSM-5 criteria. Research on Social Work Practice 24: 6777.
Google Scholar | SAGE Journals | ISI
Lord, C, Petkova, E, Hus, V. (2012) A multisite study of the clinical diagnosis of different autism spectrum disorders. Archives of General Psychiatry 69: 306313.
Google Scholar | Crossref | Medline
Mackelprang, RW (2010) Disability controversies: past, present and future. Journal of Social Work in Disability & Rehabilitation 9: 8997.
Google Scholar | Crossref
Mackelprang, RW, Salsgiver, RO (2009) Disability: A Diversity Model Approach in Human Service Practice. Chicago, IL: Lyceum Books.
Google Scholar
Mahjouri, S, Lord, CE (2012) What the DSM-5 portends for research, diagnosis, and treatment of autism spectrum disorders. Current Psychiatry Reports 14: 739747.
Google Scholar | Crossref | Medline | ISI
Milton, D (2012) So what exactly is autism? Autism Education Trust. Available at: http://www.aettraininghubs.org.uk/wp-content/uploads/2012/08/1_So-what-exactly-is-autism.pdf (accessed 5 January 2015).
Google Scholar
Moore, C (2010) Parent’s view on the genetic link to autism: ‘I don’t want it to be eradicated’. The Guardian, 10 June. Available at: http://www.theguardian.com/lifeandstyle/2010/jun/10/autism-parents-view-genetics (accessed 9 October 2014).
Google Scholar
Nicolaidis, C (2012) What can physicians learn from the neurodiversity movement? Virtual Mentor: American Medical Association Journal of Ethics 14: 503510.
Google Scholar
Oliver, M (1990) The Politics of Disablement. London: Macmillan Publishers.
Google Scholar | Crossref
Pellicano, E, Stears, M (2011) Bridging autism, science and society: moving toward an ethically informed approach to autism research. Autism Research 4: 112.
Google Scholar | Crossref | Medline | ISI
Pellicano, E, Dinsmore, A, Charman, T (2014a) Views on researcher-community engagement in autism research in the United Kingdom: a mixed-methods study. PLoS ONE 9: e109946.
Google Scholar | Crossref | Medline | ISI
Pellicano, E, Dinsmore, A, Charman, T (2014b) What should autism research focus upon? Community views and priorities from the United Kingdom. Autism 18: 756770.
Google Scholar | SAGE Journals | ISI
Robertson, SM (2010) Neurodiversity, quality of life, and autistic adults: shifting research and professional focuses onto real life challenges. Disability Studies Quarterly 30:
Google Scholar
Robison, JE (2011) Be Different: Adventures of a Free-Range Aspergian with Practical Advice for Aspergians, Misfits, Families & Teachers. New York: Crown Publishing Group.
Google Scholar
Russell, G, Norwich, B (2012) Dilemmas, diagnosis and de-stigmatization: parental perspectives on the diagnosis of autism spectrum disorders. Clinical Child Psychology and Psychiatry 17: 229245.
Google Scholar | SAGE Journals | ISI
Ryan, S, Runswick-Cole, K (2009) From advocate to activist? Mapping the experiences of mothers of children on the autism spectrum. Journal of Applied Research in Intellectual Disabilities 22: 4353.
Google Scholar | Crossref | ISI
Shapiro, J (1993) No Pity: People with Disabilities Forging a New Civil Rights Movements. New York: Times Books.
Google Scholar
Silverman, C (2011) Understanding Autism: Parents, Doctors, and the History of a Disorder. Princeton, NJ: Princeton University Press.
Google Scholar | Crossref
Sinclair, J (1999) Why I dislike ‘person-first’ language. Jim Sinclair’s website. Available at http://web.archive.org/web/20090210190652/http://web.syr.edu/~jisincla/person_first.htm (accessed 30 October 2014).
Google Scholar
Singer, J (1999) Why can’t you be normal for once in your life? From a ‘problem with no name’ to the emergence of a new category of difference. In: Corker, M, French, S (eds) Disability Discourse. Buckingham: Open UP.
Google Scholar
Snow, K (2006) To ensure inclusion, freedom, and respect for all, it’s time to embrace people first language. Available at: http://www.disabilityisnatural.com/images/PDF/pfl09.pdf (accessed 27 November 2014).
Google Scholar
Sousa, AC (2011) From refrigerator mothers to warrior-heroes: the cultural identity transformation of mothers raising children with intellectual disabilities. Symbolic Interaction 34: 220243.
Google Scholar | Crossref | ISI
Vaughan, E (1993) The Struggle of Blind People for Self-Determination; The Struggle of Blind People for Self-Determination: Empowerment in the Blindness Community. Springfield, IL: Charles C. Thomas Publisher.
Google Scholar
Vaughan, E (1997) People-first language: an unholy crusade. Available at: http://www.blind.net/a-philosophy-of-blindness/individual-articles/people-first-language.html (accessed 10 October 2014).
Google Scholar
Volkmar, F, Reichow, B (2013) Autism in DSM-5: progress and challenges. Molecular Autism 4: 13.
Google Scholar | Crossref | Medline | ISI
Wallace, B (2014) May 12). Autism spectrum: are you on it? Available at: http://nymag.com/news/features/autism-spectrum-2012-11/ (accessed 28 November 2014).
Google Scholar
Waltz, M (2012) Images and narratives of autism within charity discourses. Disability & Society 27: 219233.
Google Scholar | Crossref | ISI
World Health Organization (WHO) (2001) The International Classification of Functioning, Disability and Health (ICF). Geneva: WHO.
Google Scholar
Williams, G (1996) Representing disability: some questions of phenomenology and politics. In: Barnes, C, Mercer, G (eds) Exploring the Divide. Leeds: The Disability Press, pp. 11941212.
Google Scholar
Wing, L (1975) Early Childhood Autism: Clinical, Educational, and Social Aspects. Oxford: Pergamon Press.
Google Scholar
Witwer, A, Lecavalier, L (2008) Examining the validity of autism spectrum disorder subtypes. Journal of Autism and Developmental Disorders 38: 16111624.
Google Scholar | Crossref | Medline | ISI
Zola, IK (1993) Self, identity and the naming question: reflections on the language of disability. Social Science & Medicine 167173.
Google Scholar | Crossref | Medline | ISI

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