Avoiding ableist language: suggestions for autism researchers

Added on 26/09/2024

Type de contenu

Journal article of the type Commentary ( ; english)

Kristen Bottema-Beutel , Steven Kapp * , Jessica Lester , Noah Sasson , Brittany Hand
Avoiding ableist language: suggestions for autism researchers published in the journal "Autism in adulthood", n°1, vol.3, 12 pages , doi: 10.1089/aut.2020.0014

*One co-author has publicly identified as autistic. [Learn more about this mention]

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Summary/Presentation

In this commentary, we describe how language used to communicate about autism within much of autism research can reflect and perpetuate ableist ideologies (i.e., beliefs and practices that discriminate against people with disabilities), whether or not researchers intend to have such effects. Drawing largely from autistic scholarship on this subject, along with research and theory from disability studies and discourse analysis, we define ableism and its realization in linguistic practices, provide a historical overview of ableist language used to describe autism, and review calls from autistic researchers and laypeople to adopt alternative ways of speaking and writing. Finally, we provide several specific avenues to aid autism researchers in reflecting on and adjusting their language choices.

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. [Learn more about this mention]

  • F. Alexander (1966). "The History of Psychiatry: An Evaluation of Psychiatric Thought and Practice from Prehistoric Times to the Present".

  • G. Alvares, K. Bebbington, D. Cleary, K. Evans, E. Glasson, M. Maybery, S. Pillar, M. Uljarević, K. Varcin, J. Wray, A. JO Whitehouse (2020). "The misnomer of 'high functioning autism': Intelligence is an imprecise predictor of functional abilities at diagnosis". Autism, 24(1). doi:10.1177/1362361319852831

  • C. Ashby (2010). "The trouble with normal: the struggle for meaningful access for middle school students with developmental disability labels". Disability & Society, 25(3). doi:10.1080/09687591003701249

  • H. Asperger (1944). "Die ‘Autistischen Psychopathen’ im Kindesalter.". Eur Arch Psychiatr Clin Neurosci; 117(1)

  • S. Baron-Cohen, S. Wheelwright, R. Skinner, J. Martin, E. Clubley (2001). "The autism-spectrum quotient (AQ): Evidence from Asperger syndrome/high-functioning autism, males and females, scientists and mathematicians". Journal of Autism and Developmental Disorders, 31(1). doi:10.1023/a:1005653411471

  • W. Blanchett, J. Klingner, B. Harry (2009). "The Intersection of Race, Culture, Language, and Disability". Urban Education, 44(4). doi:10.1177/0042085909338686

  • M. Botha*, D. Frost (2020). "Extending the Minority Stress Model to Understand Mental Health Problems Experienced by the Autistic Population". Society and Mental Health, 10(1). doi:10.1177/2156869318804297

  • A. Broderick, A. Ne’eman (2008). "Autism as metaphor: narrative and counter‐narrative". International Journal of Inclusive Education, 12(5-6). doi:10.1080/13603110802377490

  • S. Bury, R. Jellett, J. Spoor, D. Hedley (2023). "'It Defines Who I Am' or 'It's Something I Have': What Language Do [Autistic] Australian Adults [on the Autism Spectrum] Prefer?". J Autism Dev Disord, 53(2). doi:10.1007/s10803-020-04425-3

  • P. Byrne (2000). "Stigma of mental illness and ways of diminishing it". Adv. psychiatr. treat, 6(1). doi:10.1192/apt.6.1.65

  • E. Cage, J. Di Monaco, V. Newell (2018). "Experiences of Autism Acceptance and Mental Health in Autistic Adults". J Autism Dev Disord, 48(2). doi:10.1007/s10803-017-3342-7

  • G. Canguilhem (1989). "The Normal and the Pathological".

  • J. Cherney (2011). "The rhetoric of ableism". Disabil Stud Q; 31(3).

  • N. Chown*, J. Robinson, L. Beardon, J. Downing, L. Hughes, J. Leatherland, K. Fox, L. Hickman, D. MacGregor (2017). "Improving research about us, with us: a draft framework for inclusive autism research". Disability & Society, 32(5). doi:10.1080/09687599.2017.1320273

  • J. Duffy, R. Dorner (2011). "The Pathos of 'Mindblindness': Autism, Science, and Sadness in 'Theory of Mind' Narratives". Journal of Literary & Cultural Disability Studies, 5(2). doi:10.3828/jlcds.2011.16

  • D. Edwards (1997). "Discourse and Cognition".

  • M. English, G. Gignac, T. Visser, A. Whitehouse, M. Maybery (2020). "A comprehensive psychometric analysis of autism‐spectrum quotient factor models using two large samples: Model recommendations and the influence of divergent traits on total‐scale scores". Autism Research, 13(1). doi:10.1002/aur.2198

  • N. Fairclough (2014). "Critical Discourse Analysis".

  • S. Fletcher-Watson, F. Happé (2019). "Autism: A New Introduction to Psychological Theory and Current Debate". London, UK: Routledge

  • S. Fletcher-Watson, F. Apicella, B. Auyeung, S. Beranova, F. Bonnet-Brilhault, R. Canal-Bedia, T. Charman, N. Chericoni, I. Conceição, K. Davies, T. Farroni, M. Gomot, E. Jones, A. Kaale, K. Kapica, R. Kawa, A. Kylliäinen, K. Larsen, J. Lefort-Besnard, J. Malvy, S. Manso de Dios, S. Markovska-Simoska, I. Millo, N. Miranda, G. Pasco, E. Pisula, M. Raleva, B. Rogé, E. Salomone, S. Schjolberg, P. Tomalski, A. Vicente, N. Yirmiya (2017). "Attitudes of the autism community to early autism research". Autism, 21(1). doi:10.1177/1362361315626577

  • M. Ann Gernsbacher (2017). "Editorial Perspective: The use of person‐first language in scholarly writing may accentuate stigma". Child Psychology Psychiatry, 58(7). doi:10.1111/jcpp.12706

  • D. Gillborn (2015). "Intersectionality, Critical Race Theory, and the Primacy of Racism". Qualitative Inquiry, 21(3). doi:10.1177/1077800414557827

  • K. Gillespie-Lynch, S. Kapp*, C. Shane-Simpson, D. Shane Smith, T. Hutman (2014). "Intersections Between the Autism Spectrum and the Internet: Perceived Benefits and Preferred Functions of Computer-Mediated Communication". Intellectual and Developmental Disabilities, 52(6). doi:10.1352/1934-9556-52.6.456

  • C. Greenburg, S. Des Roches Rosa (2020). "Two Winding Parent Paths to Neurodiversity Advocacy". Autistic Community and the Neurodiversity Movement. doi:10.1007/978-981-13-8437-0_12

  • E. Griffin, D. Pollak (2009). "Student experiences of neurodiversity in higher education: insights from the BRAINHE project". Dyslexia, 15(1). doi:10.1002/dys.383

  • H. Henderson, K. Ono, C. McMahon, C. Schwartz, L. Usher, P. Mundy (2015). "The Costs and Benefits of Self-monitoring for Higher Functioning Children and Adolescents with Autism". J Autism Dev Disord, 45(2). doi:10.1007/s10803-013-1968-7

  • L. Hull, K. Petrides, C. Allison, P. Smith, S. Baron-Cohen, M. Lai, W. Mandy (2017). "'Putting on My Best Normal': Social Camouflaging in Adults with Autism Spectrum Conditions". J Autism Dev Disord, 47(8). doi:10.1007/s10803-017-3166-5

  • P. Jaarsma, S. Welin (2012). "Autism as a Natural Human Variation: Reflections on the Claims of the Neurodiversity Movement". Health Care Anal, 20(1). doi:10.1007/s10728-011-0169-9

  • V. Jaswal, N. Akhtar (2019). "Being versus appearing socially uninterested: Challenging assumptions about social motivation in autism". Behav Brain Sci, 42. doi:10.1017/s0140525x18001826

  • T. Johnson, A. Joshi (2015). "Dark clouds or silver linings? A stigma threat perspective on the implications of an autism diagnosis for workplace well-being.". Journal of Applied Psychology, 101(3). doi:10.1037/apl0000058

  • C. Jones, F. Happé, H. Golden, A. Marsden, J. Tregay, E. Simonoff, A. Pickles, G. Baird, T. Charman (2009). "Reading and arithmetic in adolescents with autism spectrum disorders: Peaks and dips in attainment.". Neuropsychology, 23(6). doi:10.1037/a0016360

  • L. Kanner (1943). "Autistic disturbances of affective contact". Nervous Child. 1943;2(3):217–25

  • B. Kaplan, D. Dewey, S. Crawford, B. Wilson (2001). "The Term Comorbidity Is of Questionable Value in Reference to Developmental Disorders". J Learn Disabil, 34(6). doi:10.1177/002221940103400608

  • S. Kapp* (2013). "Empathizing with sensory and movement differences: moving toward sensitive understanding of autism". Front. Integr. Neurosci., 7. doi:10.3389/fnint.2013.00038

  • S. Kapp* (2020). "Autistic Community and the Neurodiversity Movement".

  • L. Kenny, C. Hattersley, B. Molins, C. Buckley, C. Povey, E. Pellicano (2016). "Which terms should be used to describe autism? Perspectives from the UK autism community". Autism, 20(4). doi:10.1177/1362361315588200

  • A. Kuntz (2010). "Representing representation". International Journal of Qualitative Studies in Education, 23(4). doi:10.1080/09518398.2010.492769

  • A. McGuire (2016). "Re-thinking Autism: Diagnosis, Identity and Equality".

  • K. Ries Merikangas, J. He, M. Burstein, S. Swanson, S. Avenevoli, L. Cui, C. Benjet, K. Georgiades, J. Swendsen (2010). "Lifetime Prevalence of Mental Disorders in U.S. Adolescents: Results from the National Comorbidity Survey Replication–Adolescent Supplement (NCS-A)". Journal of the American Academy of Child & Adolescent Psychiatry, 49(10). doi:10.1016/j.jaac.2010.05.017

  • P. Mundy (2009). "Lessons learned from autism: An information processing model of joint attention and social cognition". In: Minnesota Symposium on Child Psychology: Meeting the Challenge of Translational Research in Child Psychology, vol. 35. Hoboken, NJ: John Wiley and Sons; 59–113

  • S. Murray (2008). "Representing Autism: Culture, Narrative, Fascination".

  • K. Mutua (2006). "Disrupting normalcy and the practical concerns of classroom teachers". In: Danforth S, Gabel SL, eds. Vital Questions Facing Disability Studies in Education. New York, NY: Peter Lang

  • M. Nadesan (2008). "Constructing autism: A brief genealogy". In: Osteen M, eds. Autism and Representation. New York: Routledge

  • G. Noblit (2004). "Postcritical Ethnography: Reinscribing Critique". Cresskill, NJ: Hampton Press

  • M. Oliver (1996). "Exploring the Divide". Leeds, UK: The Disability Press

  • L. Pellicano, W. Mandy, S. Bölte, A. Stahmer, J. Lounds Taylor, D. Mandell (2018). "A new era for autism research, and for our journal". Autism, 22(2). doi:10.1177/1362361317748556

  • B. Philip, R. Vita Carulli, K. Jurgis, C. Dan, C. Ellen, K. Louise (2006). "Models of helping and coping.". American Psychologist, 37(4). doi:10.1037/0003-066x.37.4.368

  • J. Potter (2012). " Discourse analysis and discursive psychology". In: Cooper H, ed. APA Handbook of Research Methods in Psychology: Quantitative, Qualitative, Neuropsychological, and Biological, vol. 2. Washington, DC: American Psychological Association

  • J. Potter (1987). "Discourse and Social Psychology". London: Sage

  • S. Rallis (2010). "'That is NOT what's happening at Horizon!': ethics and misrepresenting knowledge in text". International Journal of Qualitative Studies in Education, 23(4). doi:10.1080/09518398.2010.492808

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

  • A. Sequenzia (2015). "Typed Words, Loud Voices". Fort Worth, TX: Autonomous Press

  • P. Shakes, A. Cashin (2019). "Identifying Language for People on the Autism Spectrum: A Scoping Review". Issues in Mental Health Nursing, 40(4). doi:10.1080/01612840.2018.1522400

  • P. Shattuck, M. Wagner, S. Narendorf, P. Sterzing, M. Hensley (2011). "Post–High School Service Use Among Young Adults With an Autism Spectrum Disorder". Arch Pediatr Adolesc Med, 165(2). doi:10.1001/archpediatrics.2010.279

  • J. Singh, J. Illes, L. Lazzeroni, J. Hallmayer (2009). "Trends in US Autism Research Funding". J Autism Dev Disord, 39(5). doi:10.1007/s10803-008-0685-0

  • J. Swain, S. French (2000). "Towards an Affirmation Model of Disability". Disability & Society, 15(4). doi:10.1080/09687590050058189

  • J. Lounds Taylor, M. Mailick Seltzer (2011). "Employment and Post-Secondary Educational Activities for Young Adults with Autism Spectrum Disorders During the Transition to Adulthood". J Autism Dev Disord, 41(5). doi:10.1007/s10803-010-1070-3

  • M. Waltz (2013). "Autism: A Social and Medical History". Basingstoke: Palgrave Macmillan

  • M. Wehmeyer, H. Bersani, R. Gagne (2000). "Riding the Third Wave". Focus Autism Other Dev Disabl, 15(2). doi:10.1177/108835760001500206

  • L. Wittgenstein (1958). "Philosophical Investigations". Oxford: Blackwell

  • R. Woods* (2017). "Exploring how the social model of disability can be re-invigorated for autism: in response to Jonathan Levitt". Disability & Society, 32(7). doi:10.1080/09687599.2017.1328157

  • M. Yergeau (2018). "Authoring Autism: On Rhetoric and Neurological Queerness".


 
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