From the preface to The Politics of Autism.
A major theme of this book is that just about everything concerning autism is subject to argument. There is not even any consensus on what one should call people who have autism and other disabilities. “In the autism community, many self-advocates and their allies prefer terms such as `Autistic,’ `Autistic person,’ or `Autistic individual’ because we understand autism as an inherent part of an individual’s identity,” writes blogger Lydia Brown.[i] Other writers prefer “people-first” language (e.g., “persons with autism”) since it puts the persons ahead of the disability and describes what they have, not who they are.[ii] For the sake of stylistic variety, this book uses both kinds of language, even though this approach will satisfy neither side. I can only say that I mean no offense.
Lay abstract:
There are many ways to refer to an individual who is on the autism spectrum. A recommended approach has been to use person-first language (PFL), such as “person with autism.” A different approach is to use identity-first language (IFL), such as “autistic person.” Recent studies focused on different groups of people (e.g. autistic self-advocates, parents, and practitioners) show that some groups prefer PFL (practitioners) while others prefer IFL (autistic self-advocates). However, less is known about how researchers use PFL and IFL in academic writing (e.g. studies published in scientific journals) involving autistic research participants. Our study examined 12,962 journal abstracts (short summaries of scientific articles) from 11 academic journals that publish autism research findings. We wanted to know (a) about the use of PFL and IFL across abstracts, and (b) how PFL and IFL use has changed annually over time. We examined data for all journals individually and grouped together. Our findings showed that journal abstracts generally use PFL (65%) with some using either IFL (16%) or both PFL and IFL (20%). However, journals varied, with some showing a clear majority for PFL and a couple for IFL. Examining trends over time across journals showed that while PFL appeared to be the majority for most journals, IFL has steadily increased in the recent few years. Our study helps us understand how autism researchers write about autistic individuals and offers implications for helping researchers intentionally make choices about the language used in their autism research studies.
From the article:
Our findings highlight a shift in the language autism researchers use to write about autistic participants, particularly within the last few years. If we had conducted this review even five years earlier, our findings would have shown clear PFL dominance. There are many potential reasons for this trend to have emerged just within the last few years within the broader writing community of autism researchers. One is the change in the APA Manual guidelines from PFL only to endorsing both PFL and IFL (APA, 2010, 2020). Journals commonly cite these guidelines and others for authors to follow when preparing manuscripts for submission (see Supplemental Table 1). Furthermore, the increasing awareness of the neurodiversity movement and the impact of autistic voices in autism research has led to increased awareness for both researchers as well as practitioners about how language impacts autistic individuals (e.g. Botha & Cage, 2022; Brown, 2023; Dwyer et al., 2022; Monk et al., 2022).
