Does Language Matter? Identity-First Versus Person-First Language Use in Autism Research: A Response to Vivanti

Botha, Monique; Hanlon, Jacqueline; Williams, Gemma

doi:10.1007/s10803-020-04858-w

Cited by 235 publications

(180 citation statements)

References 53 publications

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“…We discussed our dislike of using words like 'patient' or 'participant' to describe people who should be people first and research volunteers second. The language used in academic literature is often medicalised, particularly in regards to autism and personality disorders, and focuses on participants as 'other' (Botha, Hanlon & Williams 2021;Bottema-Beutal et al 2021). The use of ableist language in research can be particularly dehumanising for marginalised researchers, standing as a constant reminder of our difference.…”

Section: Safetymentioning

confidence: 99%

Trauma informed participatory research: Reflections on co-producing a research proposal

Lonbay¹,

Pearson²,

Hamilton³

et al. 2021

Gateways

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This article discusses the development of a co-produced research proposal. The authors reflect on the process of this work and some of the challenges that were experienced by a team who had a mix of lived, clinical and academic experience of the research topic. We highlight the need to embed trauma informed principles into co-produced research and the ways in which doing so can support the development of co-produced work. As such, the article focuses on how we established safety, choice, collaboration, trustworthiness and empowerment during the process of developing the proposal. Within this we offer our reflection on some of the challenges we experienced and our learning from undertaking this work.

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Section: Safetymentioning

confidence: 99%

Trauma informed participatory research: Reflections on co-producing a research proposal

Lonbay¹,

Pearson²,

Hamilton³

et al. 2021

Gateways

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“…For example, autistic individuals tend to focus on specific areas of interest much more than allistic individuals, who generally connect to broader, less focussed input from their environment (Lawson, 2011 : Mottron et al, 2006 ). When individuals diverge from the typical, according to traditional thinking, deficit language is often used, which can lead to increased ableism (see Botha et al, 2021 ; Bottema-Beutel et al, 2021 ). Over the past six decades, autism has been considered a “disadvantage” and a “disorder.” For example, it is common to read statistics such as “autism is a lifelong condition with estimated annual support costs to Australia potentially exceeding $7 billion” (Synergies Economic Consulting, 2011 ).…”

Section: Introductionmentioning

confidence: 99%

“Just Ask Me”: The Importance of Respectful Relationships Within Schools

et al. 2021

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An inclusive approach to education requires schools and educators to address the support needs and individual predispositions of all students. Our research highlights the crucial importance of effective and respectful communication with autistic students to facilitate their successful participation in schools. This paper explores the experiences of 24 autistic individuals aged 16–67 years, through synchronous semi-structured interviews and written responses. The research team comprised both autistic and allistic (non-autistic) researchers, who worked together to design the overall project, collect interview data, and analyse the data. Relationships were frequently discussed by participants and the importance of positive relationships was positioned as key to successful participation within educational contexts. Particularly damaging were assumptions made by teachers concerning individual ability based on labels given. Participants recalled ongoing challenges with resisting stereotypes and managing stigma, while trying to craft a positive autistic identity and advocate for rightful supports for their education. At the core of these negotiations were positive relationships, and teachers who asked participants what their needs were, and then listened and proactively responded to their answers. Recommendations for more positive schooling engagements with autistic young people are provided.

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“…I will return to this point below, however, because the concerns exhibit a significant degree of variation when framed in international and multilinguistic contexts. It should also be noted that the rather basic sketch provided here, which reflects the standard terms of the discussion, scarcely represents the true complexity of the linguistic issues, explored in a sophisticated way by Botha et al (2021).…”

Section: The Involvement Of the Actually Autistic In Researchmentioning

confidence: 99%

“…Research literature has typically preferred-or even required-the use of person-first language (e.g., "persons with autism") rather than identity-first language ("autistic persons"). Yet, in English speaking circles, at least in the U.K. and increasingly North America, most "actually autistic" 1 people prefer the latter (Kenny et al, 2016;Botha et al, 2021) and are often troubled by person-first language and the insistence on its use. To speak of "persons with autism" is to suggest that the autism is additional to their identity and somewhat detachable from it, rather than an essential element of who they are.…”

Section: The Involvement Of the Actually Autistic In Researchmentioning

confidence: 99%

Autism and Biblical Studies: Establishing and Extending the Field beyond Preliminary Reflection

Macaskill

2021

Journal of Disability & Religion

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This article considers core issues of practice, method and hermeneutics, as they bear upon the development of a scholarly field concerned with "Autism and Biblical Studies. " A small body of scholarship has begun to bring biblical studies into dialogue with research into autism, and to reflect on the pertinent methodological issues; this article acknowledges the preliminary character of this and reflects upon what might be necessary for this emergent area of interest to be established as a mature field of research. The extending of the discussion to incorporate a range of sub-disciplines, each operating with different core "identifications" of the biblical material, is crucial to this, as is the careful use of insights from postcolonial and ideological critical approaches. Pivotally, however, research must also be shaped and led by those who are themselves autistic, so that autism is properly the subject and not merely the object of research.

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Does Language Matter? Identity-First Versus Person-First Language Use in Autism Research: A Response to Vivanti

Cited by 235 publications

References 53 publications

Trauma informed participatory research: Reflections on co-producing a research proposal

Trauma informed participatory research: Reflections on co-producing a research proposal

“Just Ask Me”: The Importance of Respectful Relationships Within Schools

Autism and Biblical Studies: Establishing and Extending the Field beyond Preliminary Reflection

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