Moving from Disorder to Difference: A Systematic Review of Recent Language Use in Autism Research.

ABSTRACT

Background: The neurodiversity paradigm positions autism as a neurological difference that is disabling in the societal context, shifting away from the traditional medical view of a disorder. Several recent publications recommend use of alternative neuro-affirming language (ANL) instead of traditional medical language (TML) with the aim to increase acceptance of autistic people and reduce prejudice. Examining language use within recent autism literature, including by journal and study characteristics, may offer insight into the influence of these recommendations and current disability discourse. Methods: A systematic review was conducted using Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines in autism research from 2021 (n = 2322 articles; 394 journals). Articles were coded according to topic, participants, and use of self-report. Journals were coded by topic, geographic region, and language guidelines. Terminology use was extracted using QDA Miner software. Results: Many articles primarily used TML with a smaller subset primarily using ANL. There was a positive correlation between ANL use and publication date. More ANL was associated with articles on topics of autistic traits, diversity, equity, and inclusion (DEI), or lifespan and that included autistic adults or autistic self-report. More ANL was also found in journals from Australasia or Europe or those that had identify-first language (IFL) guidelines. Less ANL (more TML) was associated with articles on biology/causes or treatment and that included autistic or non-autistic parents, autistic youth, siblings, or other clinical groups, and were published in medical journals. Conclusion: TML continues to largely dominate language choices in autism research, with an emerging shift toward ANL in recent literature. Increased ANL may be facilitated by journal and article language recommendations. Neuro-affirming language was also more likely in articles on topics prioritized by the autistic community, that included autistic adults, and may also be driven by cultural differences. Researchers and practitioners should consider the potential for their language use to impact individual and societal views of autistic people.

Why is this topic important? Language use impacts how groups of people are viewed. Historically, autism was talked about as part of the medical model, which usually focuses on autism symptoms and deficits. The recent neurodiversity paradigm views autism as a difference that could be accepted and supported. Part of this acceptance is using words that describe autism as part of someone's identity and emphasizing individualized strengths or needs. What is the purpose of this article? Several recent papers recommend using alternative neuro-affirming language (ANL) instead of traditional medical language (TML) in autism research. This article summarizes autism language use and examines how certain parts of journals and articles may impact phrasing. What did the authors do? We used guidelines for the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) to gather autism research studies published in 2021. We found 2322 articles from 594 journals. We first summarized how much ANL was in the articles relative to TML. Then, we compared this language use based on the articles' topic and types of participants, and also the journals' field, geographic region, and whether they included guidelines for language use. What were the results of the review? We found that articles primarily used TML, but more recent articles had more ANL. Articles that had more ANL were studies published more recently, were about traits or lifespan experiences (e.g., parenting, work, aging), included autistic adults as participants, from journals with language guidelines specific to disabled or autistic people, or from journals from Australasia or Europe. Articles that had more TML were those about treatments for or biological explanations of autism, included siblings as participants, or were published in medical journals. This means that certain aspects of articles and journals are related to how researchers write about autism. What do the authors recommend? Clinicians and researchers should ask autistic people their preferences surrounding language. Common language when referring to autism may differ based on the topic and participants that are being studied. More research is needed to understand how different terms impact prejudice toward and societal views of autistic people. We should also consider cultural differences in autism views, which influence researchers' terminology use. Journals that wish to accelerate use of ANL should consider adopting explicit guidelines for language use. How will these findings help autistic people now or in the future? This article summarizes how researchers talk about autism, which likely impacts how autistic people are viewed by others. Increasing use of ANL may gradually impact conceptualizations of autism and prejudice regarding autistic people.