‘Autistic person’ or ‘person with autism’? Person-first language preference in Dutch adults with autism and parents

Abstract

The language used to refer to autism has been a topic of ongoing debate. Research in English-speaking countries indicated an overall preference for identity-first language (‘autistic person’) among autistic adults rather than person-first language (‘person with autism’). We examined terminology preference in Dutch autistic adults ( n = 1026; 16–84 years; 57% women) and parents of autistic children ( n = 286) via an online survey. A majority of self-reporting adults with autism (68.3%) and parents (82.5%) demonstrated a person-first language preference. A younger age, higher IQ and more autistic traits predicted a relatively stronger identity-first language preference in autistic adults. We conclude that language and culture may impact terminology preference of adults with autism and parents. For now, we advocate to use a mix of person-first language and identity-first language in academic papers to cover the full range of preferences. Lay abstract There are different words to describe people with an autism diagnosis. For instance, we can put the person before autism (e.g. ‘person with autism’), or we can put autism before the person (e.g. ‘autistic person’). Previous research showed that autistic adults in English-speaking countries generally liked it better when autism is placed before the person. Yet, people also greatly differ in the words they like and dislike. In this study, we examined word preference in Dutch autistic adults ( n = 1026; 16–84 years; 57% women) and parents of autistic children ( n = 286). Via an online questionnaire, we asked our participants to select one term for autistic people that they liked best. The results showed that most adults with autism (68.3%) and parents (82.5%) preferred to put the person before autism. Younger adults, with a higher intelligence, and with more autistic traits, were a bit more likely to put autism before the person. We conclude that there are large differences in the words that people prefer. Because we found different results in our Dutch participants compared to participants in English-speaking countries, we think that the Dutch language or culture may also play a role in word preference. For now, we advise autism researchers to use both person-first and autism-first language.

Compassionate pedagogy for neurodiversity in higher education: A conceptual analysis

“…Avoiding the language of pathology (e.g., symptoms, comorbidities, high/low functioning) in favour of more neutral alternatives (e.g., characteristics, co-occurring considerations, individual abilities or support needs) is a simple modification that can have a meaningful impact on students’ sense of place in the classroom, and in turn, how the education community of peers and staff make sense of difference ( Bottema-Beutel et al, 2021 ). There is good evidence, at least in the Anglophone world, that many autistic people prefer identity-first language (e.g., autistic student) over person-first language (e.g., student with autism), which can imply that the autism is separable from the person ( Kenny et al, 2015 ; Taboas et al, 2022 ; see Buijsman et al, 2022 for different terminology preferences in a Dutch sample). Analogous identity-first terminology for other neurodevelopmental differences is not yet clear or settled, but the language of neurodiversity is constantly evolving.…”

Perspective Chapter: Rethinking Autism Assessment, Diagnosis, and Intervention within a Neurodevelopmental Pathway Framework

“…Preferred language and terminology in relation to autism and other neurodevelopmental conditions is to some extent culturally determined and continue to evolve [21]. In English-speaking countries, research highlights a preference for "identity first" language and reference to "autistic people," however a review of Dutch people, reported a preference for person first language-referring to "people with autism" [22]. In our own community in Scotland, autistic people have shared with us how important their autistic identity is and how much language matters [23].…”

A Matter of Style

“…1 There are some exceptions to this, as some patient groups, such as those with autism, have gone on record as saying that they prefer "identity-first" language, although preferences within patient groups may vary by country or language background. 2 The JAMA Network, which publishes the AMA Manual of Style, has also done considerable work to provide guidance to authors on how to appropriately report information about age, race, ethnicity, sex, gender, indigenous status, and other human characteristics that must be carefully described to maintain individuals' dignity and avoid furthering historical inequities. 3 Authors should refer to the guidance on appropriate reporting of demographic information and the use of inclusive language when preparing manuscript submissions.…”

“…For example, rather than referring to study participants as “diabetics,” we would say “persons with diabetes.” 1 There are some exceptions to this, as some patient groups, such as those with autism, have gone on record as saying that they prefer “identity-first” language, although preferences within patient groups may vary by country or language background. 2…”