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

Added on 20/10/2024

Type de contenu

Journal article of the type Scientific research ( ; english)

Which terms should be used to describe autism? Perspectives from the uk autism community published in the journal "Autism" n°20, vol.4, 21 pages , doi: 10.1177/1362361315588200

=> Restricted and paid access

Summary/Presentation

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.


For your information:

(1) References in blue are resources listed on our site.

(2) Authors listed in this bibliography whose names are in color have published other resources referenced on the site. Clicking on the name allows you to see the list of resources they have published and shared on the site.

(3) Authors whose names are followed by an asterisk have publicly disclosed being autistic.


  • APA (1987). "Diagnostic and Statistical Manual of Mental Disorders".

  • APA (2013). "Diagnostic and Statistical Manual of Mental Disorders".

  • N. Bagatell (2010). "From cure to community: transforming notions of autism". Journal of the Society for Psychological Anthropology, 38

  • D. Bailey (1991). "Guidelines for authors". Journal of Early Interventions, 18.

  • D. Lee Baker (2011). "The Politics of Neurodiversity".

  • C. Barnes (1999). "Exploring Disability: A Sociological Introduction".

  • B. Bettleheim (1967). "The Empty Fortress: Infantile Autism and the Birth of the Self".

  • J. Blaska (1993). "Perspectives on Disability".

  • E. Bleuler (1911). "Dementia praecox oder gruppe der schizophrenien Handbuch der Psychiatrie. Spezieller Teil. 4. Abteilung, 1.Hälfte".

  • V. Bovell (2006). "We don't need to wipe out autism. We need to care more". Mail Online, 19 June. (Source)

  • V. Braun, V. Clarke (2006). "Using thematic analysis in psychology". Qualitative Research in Psychology, 3(2). doi:10.1191/1478088706qp063oa

  • L. Brown* (2011a). "Identity and hypocrisy: a second argument against person-first language, 28 November". (Source)

  • L. Brown* (2011b). "The significance of semantics: person-first language: why it matters, 4 August". (Source)

  • S. Bölte, E. de Schipper, J. Robison*, V. C.N. Wong, M. Selb, N. Singhal, P. de Vries, L. Zwaigenbaum (2014). "Classification of Functioning and Impairment: The Development of ICF Core Sets for Autism Spectrum Disorder". Autism Research, 7(1). doi:10.1002/aur.1335

  • L. Ruiz Calzada, N. Pistrang, W. Mandy (2012). "High-Functioning Autism and Asperger's Disorder: Utility and Meaning for Families". J Autism Dev Disord, 42(2). doi:10.1007/s10803-011-1238-5

  • B. Chamak (2008). "Autism and social movements: French parents' associations and international autistic individuals' organisations". Sociology Health & Illness, 30(1). doi:10.1111/j.1467-9566.2007.01053.x

  • J. Charlton (1998). "Nothing About Us Without Us".

  • J. Davidson, V. Henderson (2010). "'Coming out' on the spectrum: autism, identity and disclosure". Social & Cultural Geography, 11(2). doi:10.1080/14649360903525240

  • M. Dekker* (2011). "Owning the languages of autism". Paper presented at the 2011 Autscape conference. Pontefract. (Source)

  • P.C. Durbin-Westby (2009). "IACC comments: November 10, 2009. 10 November". (Source)

  • D. Feldman, P. Gordon, M. White, C. Weber (2002). "The Effects of People-First Language and Demographic Variables on Beliefs, Attitudes and Behavioral Intentions Toward People with Disabilities". sgrjarc, 33(3). doi:10.1891/0047-2220.33.3.18

  • P. Foreman (2005). "Language and disability". Journal of Intellectual & Developmental Disability, 30(1). doi:10.1080/13668250500033003

  • M. Froschl (1984). "Including All of Us: An Early Childhood Curriculum about Disability".

  • L. Gilmour, P. Melike Schalomon, V. Smith (2012). "Sexuality in a community based sample of adults with autism spectrum disorder". Research in Autism Spectrum Disorders, 6(1). doi:10.1016/j.rasd.2011.06.003

  • E. Goffman (1963). "Stigma: Notes on the Management of Spoiled Identity".

  • R. Grzadzinski, M. Huerta, C. Lord (2013). "DSM-5 and autism spectrum disorders (ASDs): an opportunity for identifying ASD subtypes". Mol Autism, 4(1). doi:10.1186/2040-2392-4-12

  • H. Halmari (2011). "Political correctness, euphemism, and language change: The case of 'people first'". Journal of Pragmatics, 43(3). doi:10.1016/j.pragma.2010.09.016

  • R. Hassall, J. Rose, J. McDonald (2005). "Parenting stress in mothers of children with an intellectual disability: the effects of parental cognitions in relation to child characteristics and family support". J intellect Disabil Res, 49(6). doi:10.1111/j.1365-2788.2005.00673.x

  • P. Howlin, S. Goode, J. Hutton, M. Rutter (2004). "Adult outcome for children with autism". Child Psychology Psychiatry, 45(2). doi:10.1111/j.1469-7610.2004.00215.x

  • B. Ingersoll, D. Hambrick (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(1). doi:10.1016/j.rasd.2010.04.017

  • T.R. Insel (2011). "Autism research: goals, priorities, and advances". [Powerpoint slides]. (Source)

  • L. Kanner (1943). "Autistic disturbances of affective contact". Nervous Child, 2

  • L. Kanner (2010). "Problems of nosology and psychodynamics of early infantile autism.". American Journal of Orthopsychiatry, 19(3). doi:10.1111/j.1939-0025.1949.tb05441.x

  • S. Kapp*, K. Gillespie-Lynch, L. Sherman (2012). "Deficit, difference, or both? Autism and neurodiversity". Developmental Psychology, 49(1):

  • I. Kenneth Zola (1993). "Self, identity and the naming question: Reflections on the language of disability". Social Science & Medicine, 36(2). doi:10.1016/0277-9536(93)90208-l

  • C. Kim (2014). "The logical fallacy of person first language, 18 June". (Source)

  • G. King, L. Zwaigenbaum, S. King, D. Baxter, P. Rosenbaum, A. Bates (2006). "A qualitative investigation of changes in the belief systems of families of children with autism or Down syndrome". Child, 32(3). doi:10.1111/j.1365-2214.2006.00571.x

  • D. Kite, J. Gullifer, G. Tyson (2013). "Views on the Diagnostic Labels of Autism and Asperger's Disorder and the Proposed Changes in the DSM". J Autism Dev Disord, 43(7). doi:10.1007/s10803-012-1718-2

  • P. Ladd (2003). "Understanding Deaf Culture".

  • H. Lane (2000). "The Mask of Benevolence: Disabling the Deaf Community".

  • K. Faye Linton, T. Krcek, L. Sensui, J. Spillers (2014). "Opinions of People Who Self-Identify With Autism and Asperger's on DSM-5 Criteria". Research on Social Work Practice, 24(1). doi:10.1177/1049731513495457

  • C. Lord (2012). "A Multisite Study of the Clinical Diagnosis of Different Autism Spectrum Disorders". Arch Gen Psychiatry, 69(3). doi:10.1001/archgenpsychiatry.2011.148

  • R.W. Mackelprang (2009). "Disability: A Diversity Model Approach in Human Service Practice".

  • R. Mackelprang (2010). "Disability Controversies: Past, Present, and Future". Journal of Social Work in Disability & Rehabilitation, 9(2-3). doi:10.1080/1536710x.2010.493475

  • S. Mahjouri, C. Lord (2012). "What the DSM-5 Portends for Research, Diagnosis, and Treatment of Autism Spectrum Disorders". Curr Psychiatry Rep, 14(6). doi:10.1007/s11920-012-0327-2

  • C. Moore (2010). "Parent's view on the genetic link to autism: 'I don't want it to be eradicated'". The Guardian, 10 June. (Source)

  • M. Oliver (1990). "The Politics of Disablement".

  • World Health Organization (WHO) (2001). "The International Classification of Functioning, Disability and Health (ICF)".

  • E. Pellicano, M. Stears (2011). "Bridging autism, science and society: moving toward an ethically informed approach to autism research". Autism Research, 4(4). doi:10.1002/aur.201

  • S.M. Robertson (2010). "Neurodiversity, quality of life, and autistic adults: shifting research and professional focuses onto real life challenges". Disability Studies Quarterly, 30

  • J.E. Robison* (2011). "Be Different: Adventures of a Free-Range Aspergian with Practical Advice for Aspergians, Misfits, Families & Teachers".

  • G. Russell, B. Norwich (2012). "Dilemmas, diagnosis and de-stigmatization: Parental perspectives on the diagnosis of autism spectrum disorders". Clin Child Psychol Psychiatry, 17(2). doi:10.1177/1359104510365203

  • S. Ryan, K. Runswick Cole (2009). "From Advocate to Activist? Mapping the Experiences of Mothers of Children on the Autism Spectrum". Research Intellect Disabil, 22(1). doi:10.1111/j.1468-3148.2008.00438.x

  • J. Shapiro (1993). "No Pity: People with Disabilities Forging a New Civil Rights Movements".

  • C. Silverman (2011). "Understanding Autism".

  • J. Sinclair (1999). "Why I dislike 'person-first' language". Jim Sinclair's website. (Source)

  • J. Singer (1999). "Disability Discourse".

  • K. Snow (2006). "To ensure inclusion, freedom, and respect for all, it's time to embrace people first language". (Source)

  • A. Sousa (2011). "From Refrigerator Mothers to Warrior‐Heroes: The Cultural Identity Transformation of Mothers Raising Children with Intellectual Disabilities". Symbolic Interaction, 34(2). doi:10.1525/si.2011.34.2.220

  • E. Vaughan (1993). "The Struggle of Blind People for Self-Determination; The Struggle of Blind People for Self-Determination: Empowerment in the Blindness Community".

  • E. Vaughan (1997). "People-first language: an unholy crusade". (Source)

  • F. Volkmar, B. Reichow (2013). "Autism in DSM-5: progress and challenges". Mol Autism, 4(1). doi:10.1186/2040-2392-4-13

  • B. Wallace (2014). "Autism spectrum: are you on it?". (Source)

  • M. Waltz (2012). "Images and narratives of autism within charity discourses". Disability & Society, 27(2). doi:10.1080/09687599.2012.631796

  • L. Wing (1975). "Early Childhood Autism: Clinical, Educational, and Social Aspects".

  • A. Witwer, L. Lecavalier (2008). "Examining the Validity of Autism Spectrum Disorder Subtypes". J Autism Dev Disord, 38(9). doi:10.1007/s10803-008-0541-2

This resource is cited in 20 resources referenced on the site:


 
Summarize/Comment on/Translate this reference?