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.
Abstract
Purpose
Recommendations concerning the language used to describe autism center primarily around preferences for person-first language (PFL; e.g., person with autism) or identity-first language (IFL; e.g.., autistic person). Empirical research on this topic has recently proliferated, yet there is no clear consensus. In this study, we systematically reviewed prior research on the autistic community’s language preferences.
Methods
Our search generated 2483 articles. Nineteen studies (N = 6350) quantitatively assessed autistic people’s perspectives of autism language terms. We extracted data regarding most preferred terms and terms deemed acceptable for use.
Results
All studies were conducted online. Fourteen assessed preferred terminology; 10 found that more participants preferred IFL than PFL, though there was also considerable PFL endorsement (4–39% of participants) in these studies. Two studies that found a preference for PFL over IFL were conducted in Dutch. When able to choose “no preference/either” (6 studies), 4–37% of participants chose this option. Seven studies assessed acceptable terms; IFL terms were endorsed as acceptable by ~ 40–97% of participants, PFL terms by 5–53%, and “on the spectrum” by 8–45%. Across studies, participants were not representative of the entire autism spectrum (e.g., likely few participants with intellectual disability).
Conclusion
Study results vary widely and suggest no consensus as to whether individuals with autism prefer IFL or PFL, neither across nor necessarily even within cultures and languages. We present several considerations for members of the autism community (e.g., researchers, clinicians, etc.) regarding use of PFL and IFL, with the ultimate goal of ensuring individual preferences are respected.
