Preferences for identity-first versus person-first language in a US sample of autism stakeholders

Abstract

Although person-first language is commonly used in many professional settings, this practice has received criticism from self-advocates and scholars who believe that identity-defining features, such as autism, cannot be separated from the individual. Arguments have been made that person-first language may perpetuate stigma by drawing attention to a disability through unconventional language. Increasingly, disability advocates have expressed preferences for identity-first language. We surveyed US autism stakeholders ( n = 728) about their usage of and preferences for person-first language and identity-first language. Preference and use of terms varied across stakeholder groups (adults with autism, parents of autistic children, professionals, family members/friends, and a comparison group of people with little to no experience with the autism community). Autistic adults preferred to self-identify using identity-first language (87%); however, a sizable minority of adults with autism prefer to self-identify with person-first language (13%). Professionals were more likely to use, like, and choose person-first language terms, which is consistent with current guidelines for usage in professional settings and prescribed by style guides for written communication. As the language we use shapes our conscious and unconscious perceptions and beliefs of individuals with autism, it is critical to identify the terminology that is preferred by individuals within the community. Lay abstract There is currently disagreement among professionals (such as teachers, therapists, researchers, and clinicians) about the most appropriate and respectful way to refer to individuals with disabilities in general, and those with autism, in particular. Supporters of person-first language feel that it is important to emphasize the person rather than the disorder or disability, and promote the use of terms such as, “person with autism” or “a person with ASD.” The goal is to reduce stereotypes and discrimination and emphasize the person’s individuality rather than their disability. However, some people within the autism community have questioned the use of person-first terms because they are awkward and use an unconventional style of language that draws attention to the disability. Moreover, autistic individuals and their families are beginning to support the use of identity-first language that embraces all aspects of one’s identity. Surveys in the United Kingdom and Australia support the idea that both types of language are preferred by different groups of autism stakeholder groups. In our study, we surveyed autism stakeholders in the United States. Overwhelmingly, autistic adults ( n = 299) preferred identity-first language terms to refer to themselves or others with autism. Professionals who work in the autism community ( n = 207) were more likely to support and use person-first language. Language is dynamic and our findings support the need for open communication among autism professionals about how we communicate with and about autistic individuals and their families.

“Autism is everyone’s business”: Autism knowledge and self-efficacy amongst NHS Scotland mental health professionals

“…Shifting focus from the medical model and towards a greater appreciation of neurodiversity may thus be warranted (18). Indeed, other attitudes expressed by our participants concerned some of the debates which form part of this shift -such as whether we should take a 'person-first' approach, with some participants stating that an autism diagnosis did not define the person, a view that professionals often report (33). This view, however, is not aligned with the neurodiversity movement or the views of many autistic people, who often prefer identity-first language and argue that it is not possible to separate an autistic person from 'their autism' (15,34).…”

Well-being and quality of life in people with disabilities practicing sports, athletes with disabilities, and para-athletes: Insights from a critical review of the literature

“…Here, we want to acknowledge that, while the first option has the benefit of emphasizing the person's individuality with the intention of reducing disability-related discrimination and stereotypes, on the other hand, its use may sound "awkward" and "unconventional" (Taboas et al, 2022). Paradoxically and unintentionally, its use could result in drawing "attention to the disability" (Taboas et al, 2022). Also, the disability community is beginning to "support the use of identity-first language that embraces all aspects of one's identity" (Taboas et al, 2022), different from professionals who work in the disability community (Taboas et al, 2022).…”

“…Currently, there is disagreement about the most respectful and appropriate way to refer to individuals with disabilities: “person-first language” (which focuses on the person rather than the disability), or “identity-first language.” Here, we want to acknowledge that, while the first option has the benefit of emphasizing the person’s individuality with the intention of reducing disability-related discrimination and stereotypes, on the other hand, its use may sound “awkward” and “unconventional” ( Taboas et al, 2022 ). Paradoxically and unintentionally, its use could result in drawing “attention to the disability” ( Taboas et al, 2022 ). Also, the disability community is beginning to “support the use of identity-first language that embraces all aspects of one’s identity” ( Taboas et al, 2022 ), different from professionals who work in the disability community ( Taboas et al, 2022 ).…”

“…Paradoxically and unintentionally, its use could result in drawing “attention to the disability” ( Taboas et al, 2022 ). Also, the disability community is beginning to “support the use of identity-first language that embraces all aspects of one’s identity” ( Taboas et al, 2022 ), different from professionals who work in the disability community ( Taboas et al, 2022 ). However, some survey-based studies seem to suggest that “both types of language are preferred by different groups of … [disability] stakeholder groups” ( Taboas et al, 2022 ).…”

A Practical Guide for Improving Orthopaedic Care in Children with Autism Spectrum Disorder

“…More recently, there is increasingly recognition in the ASD community that there is a continuum of preferences in terms of identity descriptors, with some individuals preferring PFL, while others would prefer identity-first language (IFL). 13 The phrase, "autistic child," is an example of IFL. Given this variability, during their first encounters with families, providers can ask parents directly about their identity descriptor preferences or take their lead and notice how they speak about their child.…”