Does language matter? Identity-first versus person-first language use in autism research: A response to Vivanti

Botha, Monique; Hanlon, Jacqueline; Williams, Gemma

doi:10.31219/osf.io/75n83

Cited by 13 publications

(4 citation statements)

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“…74 The creation of subtypes and the language around them can also lead to additional forms of stigma manifesting. 75,76 Diagnosing women with ''female autism'' and men with ''autism'' proper lends credence to the suggestion that women are not really autistic, and do not experience or understand the challenges that real autistic people (i.e., men) experience. Similar discussion can be seen with regard to the former autism/Asperger syndrome differential diagnoses, and the harmful stereotypes that are associated (i.e., those with a diagnosis of Asperger syndrome being assumed to be simply ''eccentric'' and having low support needs vs. the idea of someone with a diagnosis of autism lacking capacity 77 ).…”

Section: Pearson and Rosementioning

confidence: 94%

A Conceptual Analysis of Autistic Masking: Understanding the Narrative of Stigma and the Illusion of Choice

Pearson

Rose

2021

Autism in Adulthood

214

160

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Autistic masking is an emerging research area that focuses on understanding the conscious or unconscious suppression of natural autistic responses and adoption of alternatives across a range of domains. It is suggested that masking may relate to negative outcomes for autistic people, including late/missed diagnosis, mental health issues, burnout, and suicidality. This makes it essential to understand what masking is, and why it occurs. In this conceptual analysis, we suggest that masking is an unsurprising response to the deficit narrative and accompanying stigma that has developed around autism. We outline how classical social theory (i.e., social identity theory) can help us to understand how and why people mask by situating masking in the social context in which it develops. We draw upon the literature on stigma and marginalization to examine how masking might intersect with different aspects of identity (e.g., gender). We argue that although masking might contribute toward disparities in diagnosis, it is important that we do not impose gender norms and stereotypes by associating masking with a ''female autism phenotype.'' Finally we provide recommendations for future research, stressing the need for increased understanding of the different ways that autism may present in different people (e.g., internalizing and externalizing) and intersectionality. We suggest that masking is examined through a sociodevelopmental lens, taking into account factors that contribute toward the initial development of the mask and that drive its maintenance.

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Section: Pearson and Rosementioning

confidence: 94%

A Conceptual Analysis of Autistic Masking: Understanding the Narrative of Stigma and the Illusion of Choice

Pearson

Rose

2021

Autism in Adulthood

214

160

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“… 1 In accordance with the preferences expressed by autistic self-advocates and their allies (see Kenny et al, 2016 ; Botha et al, 2021 ), this paper uses “identity-first language” (i.e., autistic woman ) rather than person-first language (i.e., a woman with autism ). This choice does not imply a negative judgement toward individuals with autism referring to themselves as such, if this is their wish.…”

mentioning

confidence: 93%

Mutual (Mis)understanding: Reframing Autistic Pragmatic “Impairments” Using Relevance Theory

2021

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A central diagnostic and anecdotal feature of autism is difficulty with social communication. We take the position that communication is a two-way, intersubjective phenomenon—as described by the double empathy problem—and offer up relevance theory (a cognitive account of utterance interpretation) as a means of explaining such communication difficulties. Based on a set of proposed heuristics for successful and rapid interpretation of intended meaning, relevance theory positions communication as contingent on shared—and, importantly, mutually recognized—“relevance.” Given that autistic and non-autistic people may have sometimes markedly different embodied experiences of the world, we argue that what is most salient to each interlocutor may be mismatched. Relevance theory would predict that where this salient information is not (mutually) recognized or adjusted for, mutual understanding may be more effortful to achieve. This paper presents the findings from a small-scale, linguistic ethnographic study of autistic communication featuring eight core autistic participants. Each core autistic participant engaged in three naturalistic conversations around the topic of loneliness with: (1) a familiar, chosen conversation partner; (2) a non-autistic stranger and (3) an autistic stranger. Relevance theory is utilized as a frame for the linguistic analysis of the interactions. Mutual understanding was unexpectedly high across all types of conversation pairings. In conversations involving two autistic participants, flow, rapport and intersubjective attunement were significantly increased and in three instances, autistic interlocutors appeared to experience improvements in their individual communicative competence contrasted with their other conversations. The findings have the potential to guide future thinking about how, in practical terms, communication between autistic and non-autistic people in both personal and public settings might be improved.

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“…IFL places the disability before the individual (i.e., deaf person, deaf community). By positioning the disability before the person, IFL acknowledges the integral role that the condition or diagnosis plays in that person's identity and reenforces the trait as a positive cultural identifier (Botha et al 2021). PFL, on the other hand, places an emphasis on the person by referring to the person first (i.e., person with mental illness, person with diabetes) (Blaska 1993).…”

Section: Introductionmentioning

confidence: 99%

The Use of Person-centered Language in Medical Research Articles Focusing on Hearing Loss or Deafness

Nicks

Johnson²,

Traxler³

et al. 2022

Ear &Amp; Hearing

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Background: Hearing loss represents one of the most common disabilities worldwide. Despite its prevalence, there is a degree of stigmatization within the public's perception of, or attitude toward, individuals diagnosed with hearing loss or deafness. This stigmatization is propagated by the way hearing loss is referenced, especially in writing. Although the medical community is familiar with hearing loss, medical research is not consistently compliant with nonstigmatizing terminology, like personcentered language (PCL). This study aims to quantify the use of PCL in medical research related to hearing loss.Methods: A cross-sectional analysis of articles related to hearing loss was performed using PubMed as the primary search engine. The search encompassed articles from January 1, 2016, to November 17, 2020. Journals had to have at least 20 search returns to be included in this study. The primary search resulted in 2392 articles from 31 journals. The sample was then randomized and the first 500 articles were chosen for data extraction. Article screening was performed systematically. Each article was evaluated for predetermined non-PCL terminology to determine adherence to the American Medical Association Manual of Style (AMAMS) guidelines. Articles were included if they involved research with human participants and were available in English. Commentaries and editorials were excluded.Results: Four hundred eighty-two articles were included in this study. Results from this study indicate that 326 articles were not adherent to AMAMS guidelines for PCL (326/482; 68%). Emotional language (i.e., burden, suffer, afflicted) was employed to reference hearing loss in 114 articles (114/482; 24%). Non-PCL adherent labels (i.e., impaired and handicapped) were identified in 46% (221/482) of articles related to hearing loss or deafness. Sixty-seven articles (67/482; 14%) used person-first language in reference to the word "deaf" and 15 articles (15/482; 3%) used "deaf" as a label. Conclusions:Based on the findings from this cross-sectional analysis, the majority of medical research articles that address hearing loss contain terminology that does not conform to PCL guidelines, as established by AMAMS. Many respected organizations, like the American Medical Association, have encouraged the use of PCL in interactions between patient and medical provider. This encompasses communication in person and in writing. This recommendation stems from the understood role that language plays in how we build impressions of others, especially in a medical context. Implementing PCL to destigmatize language used in reference to deafness or hearing loss is essential to increase advocacy and protect the autonomy of these individuals.

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Does language matter? Identity-first versus person-first language use in autism research: A response to Vivanti

Cited by 13 publications

References 0 publications

A Conceptual Analysis of Autistic Masking: Understanding the Narrative of Stigma and the Illusion of Choice

A Conceptual Analysis of Autistic Masking: Understanding the Narrative of Stigma and the Illusion of Choice

Mutual (Mis)understanding: Reframing Autistic Pragmatic “Impairments” Using Relevance Theory

The Use of Person-centered Language in Medical Research Articles Focusing on Hearing Loss or Deafness

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