Autism-related language preferences of English-speaking autistic adults across the globe: A mixed methods investigation

Abstract

Over the past two decades, there have been increasing discussions around which terms should be used to talk about autism. Whilst these discussions have largely revolved around the suitability of identity-first language and person-first language, more recently this debate has broadened to encompass other autism-related terminology (e.g., “high-functioning”). To date, academic studies have not investigated the language preferences of autistic individuals outside of the UK or Australia, nor have they compared levels of endorsement across countries. Hence, the current study adopted a mixed-methods approach, employing both quantitative and qualitative techniques, to explore the linguistic preferences of 654 English-speaking autistic adults across the globe. Despite variation in levels of endorsement between countries, we found that the most popular terms were similar- the terms “‘Autism”, “Autistic person”, “Is autistic”, “Neurological/Brain Difference”, “Differences”, “Challenges”, “Difficulties”, “Neurotypical people”, and “Neurotypicals” were consistently favored across countries. Despite relative consensus across groups, both our quantitative and qualitative data demonstrate that there is no universally accepted way to talk about autism. Our thematic analysis revealed the reasons underlying participants’ preferences, generating six core themes, and illuminated an important guiding principle- to respect personal preferences. These findings have significant implications for informing practice, research and language policy worldwide.

Revealing Conflicting Ideologies

“…Several studies have shown the preferences of the autistic community for the use of identity-first language, although language use within the community is still varied (Angulo-Jiménez & DeThorne, 2019;APA, 2020;Botha et al, 2023;Bottema-Beutel et al, 2021;Buijsman et al, 2023;Bury et al, 2023;Keating et al, 2023;Kenny et al, 2016;Taboas et al, 2023). In this regard, there are conflicting ideologies in how autism is conceptualized by the autistic community and scholars.…”

“…This debate also reflects conflicting ideologies between this medicalized view and an identity and community perspective. According to Keating et al (2023), some English-speaking autistic adults reject the use of Asperger's syndrome because it "damages the unity of the community, and instead generates a hierarchy based on 'socially-valued' differences between autism and Asperger's syndrome"(p. 424). In the participants' view, this clinical and linguistic distinction is a reflection of patronizing language, which according to Bottema-Beutel et al ( 2021) is considered potentially ableist language.…”

Comparing the comprehension of short stories paired with familiar and unfamiliar melodies and spoken text in autistic children

“…We have elected to use the term autistic children, but also recognize that the best approach is to ask each person how they want to be identified as identity can be influenced by autistic identity and experiences of stigma (Bury et al, 2022). Researchers have also asserted that there is no universally accepted way to discuss autism (Keating et al, 2022). 4.…”

Negative affect and respiratory sinus arrhythmia are differentially related to social anxiety and autism features in autistic preschoolers contrasted to fragile X syndrome

“…In line with journal use guidelines informed by autistic self-advocates and stakeholders in the autism community, we refer to ASD as autism throughout this manuscript except when we use the abbreviation to delineate our groups(1,2). Similarly, we have decided to use identity-first language as much as possible(3,4).…”