Exploring an e-learning community's response to the language and terminology use in autism from two massive open online courses on autism education and technology use

被引:45
作者
Lei, Jiedi [1 ,2 ]
Jones, Lauren [1 ]
Brosnan, Mark [1 ]
机构
[1] Univ Bath, Bath, Avon, England
[2] Kings Coll London, London, England
关键词
autism; disability; identity-first; neurodiversity; person-first; quality of life; terminology; HEALTH-CARE; ASPERGERS-DISORDER; MENTAL-HEALTH; SOCIAL MODEL; SPECTRUM; EXPERIENCES; ADULTS; VIEWS; IMPAIRMENT; DISABILITY;
D O I
10.1177/1362361320987963
中图分类号
B844 [发展心理学(人类心理学)];
学科分类号
040202 ;
摘要
Prior research has identified the divergence across different stakeholder groups in the semantic choice of language when describing autism, as members of the autism and autistic community preferred to use identity-first language (autistic person), whereas professionals were more likely to use person-first language (person with autism). This study explored 803 e-learners' responses from their comments across two massive open online courses on autism education held between 2017 and 2019. Comments from members of the autistic and autism community and professionals were analysed together using thematic analysis, to identify shared opinions on what, why and how language should be used when describing autism across stakeholder groups. Learners agreed that autistic individuals should guide others on which terminology to use when describing autism and that the diagnostic label is a way to facilitate understanding across stakeholder groups and help the individual gain access to support. Semantic language choices may matter less as long as the person's difficulties are clearly acknowledged, with adaptations made to meet their specific needs. Adding to a growing body of literature on terminology use in autism research and practice, we highlight that consideration for semantic choice of language use should focus on communicating an individual's strengths and differences. Lay abstract Within the neurodiversity movement, one recent divergence is in the semantic choice of language when describing autism, as members of the autism and autistic community preferred to use identity-first language (autistic person), whereas professionals were more likely to use person-first language (person with autism). This study explored 803 e-learners' responses from their comments across two massive open online courses on autism education held between 2017 and 2019. Learners agreed that autistic individuals should guide others on which terminology to use when describing autism, and although identity-first language acknowledges autism as part of an individual's identity, it can also conjure up negative stereotypes and be stigmatising. Although family, friends and professionals highlighted that the diagnostic label is a way to facilitate understanding across stakeholder groups and help autistic individuals gain access to support, autistic self-advocates found the process of disclosing autism as a form of disability to conflict with their sense of identity, and broader terms such as 'autism spectrum' failed to capture individual strengths and weaknesses. Semantic language choices may matter less as long as the person's difficulties are clearly acknowledged, with adaptations made to meet their specific needs. Adding to a growing body of literature on terminology use in autism research and practice, we highlight that language used when describing autism should follow the autistic individual's lead, with the primary focus on communicating an individual's strengths and difficulties, to foster a sense of positive autism identity and inclusivity, and enable access to appropriate support.
引用
收藏
页码:1349 / 1367
页数:19
相关论文
共 63 条
  • [1] American Psychiatric Association, 2013, Diagnostic and statistical manual of mental disorders, V5th, DOI [DOI 10.1176/APPI.BOOKS.9780890425596, 10.1176/appi.books. 9780890425596]
  • [2] The Social Model of Disability: Dichotomy between Impairment and Disability
    Anastasiou, Dimitris
    Kauffman, James M.
    [J]. JOURNAL OF MEDICINE AND PHILOSOPHY, 2013, 38 (04): : 441 - 459
  • [3] [Anonymous], 2017, ETHICS GUIDELINES IN
  • [4] [Anonymous], 1999, WHY DISLIKE PERSON F
  • [5] From Cure to Community: Transforming Notions of Autism
    Bagatell, Nancy
    [J]. ETHOS, 2010, 38 (01) : 33 - 55
  • [6] Baglieri S., 2012, Disability Studies and the Inclusive Classroom: Critical practices for creating least restrictive attitudes
  • [7] Baker D.L., 2011, The politics of neurodiversity: Why public policy matters
  • [8] Classification of Functioning and Impairment: The Development of ICF Core Sets for Autism Spectrum Disorder
    Bolte, Sven
    de Schipper, Elles
    Robison, John E.
    Wong, Virginia C. N.
    Selb, Melissa
    Singhal, Nidhi
    de Vries, Petrus J.
    Zwaigenbaum, Lonnie
    [J]. AUTISM RESEARCH, 2014, 7 (01) : 167 - 172
  • [9] Avoiding Ableist Language: Suggestions for Autism Researchers
    Bottema-Beutel, Kristen
    Kapp, Steven K.
    Lester, Jessica Nina
    Sasson, Noah J.
    Hand, Brittany N.
    [J]. AUTISM IN ADULTHOOD, 2021, 3 (01): : 18 - 29
  • [10] Braun V., 2006, QUAL RES PSYCHOL, V3, P77, DOI DOI 10.1191/1478088706QP063OA