Language in Autism Research: Accurate and Respectful.

Abstract

Autism Research has recently published two articles online that deal with the use of language to describe autism and autistic people. A paper by Keating et al. (Autism-related language preferences of English-speaking individuals across the globe: A mixed methods investigation) (Keating et al., 2022) describes a multi-country study of the preferences of autistic individuals for the use of various terms related to autism. Like previously published single-country studies (Bury et al., 2020; Kenny et al., 2016), there is no consensus on many terms while there are indications of preference for others. For example, the identity first “autistic person” was endorsed on average by nearly 80% of the participants, whereas the person first “person with autism” was only endorsed by 24%—although this varied by country. The second paper by Singer et al. (A Full Semantic Toolbox Is Essential for Autism Research and Practice to Thrive) (Singer et al., 2022) lobbies for the use of a broad spectrum of descriptive terms related to autism by clinicians and researchers without recrimination. Words such as disorder, they claim, are medically accurate when, for example, describing individuals prone to “head-banging so intense and frequent that it results in concussions.” Discussing behavior such as this as mere “differences,” they suggest, trivializes the severity of the condition and could ultimately reduce much needed support for profoundly affected individuals. The issue of appropriate language in autism research was covered in a commentary in this journal in 2019 by John Robison who is an autistic individual (Robison, 2019). In his typical eloquent fashion, Robison discusses the identity-first versus person-first controversy by concluding that “Identity-first … tends to convey individual strength where person-first conveys weakness.” He goes on to say, “The diversity of opinion in these groups (of autistic individuals) is as great as the diversity of the autism spectrum, but one thing everyone agrees on is that people diagnosed with autism are entitled to the same rights and respect as all other humans.” He concludes, “The problem for today's clinicians is that there is no consensus on language among the community. Indeed, there is no monolithic community at all; rather, there are many different groups each with different ideas and agendas about autism and how people should be described and treated.” This is the problem that has been highlighted by the Keating et al. paper. And, as Robison said, “it becomes critical for scientists to communicate their findings in language that the autism community finds clear, respectful, and understandable.” The article by Singer et al. (2022) extends Robison's perspective and makes the point that clinicians and researchers must be able to describe the characteristics of autism without fear of recrimination. The need for such an article is due to the level of polarization between advocates of neurodiversity and many clinicians, researchers and families with profoundly affected autistic individuals. The controversy stems from the heterogeneity of the presentations of autism as Robison had indicated and the irrefutable fact that symptoms of autism range from extremes of typical human personality characteristics to clear pathology. Singer et al. make the point that reducing disability and improving the quality of life of many autistic individuals will depend on advancements coming out of biomedical research, which has a language based on a long-standing scientific heritage and promotes accurate and objective communication between scientists. Autism researchers should educate themselves on the diversity of opinions related to language. There have been several other language usage papers published in the last year or so that suggest that we should reconsider the extent to which autism is considered a pathology. Bottema-Beutel et al. (2021) have written that they believe that much of the language used to describe autistic individuals and characteristics promotes “ableist ideologies,” which they characterize as “beliefs and practices that discriminate against people with disabilities.” Dwyer et al. (2022) have also addressed the issue of language and provide suggestions for consideration about using terms in scientific publications that may be less hurtful to autistic individuals. The goal of this editorial is not to provide a comprehensive review of the controversies related to language usage in autism research. Rather, the goal is to provide some guidance to authors on how they should approach language usage for papers submitted to Autism Research. First, I would encourage all authors, both junior and senior, to read the previous commentary by Robison (2019) as well as the Singer et al. (2022) and Keating et al. (2022) papers published in Autism Research. But, I would also encourage the reading of the papers by Bottema-Beutel et al. (2021) and Dwyer et al. (2022). This would go some way toward raising the consciousness of autism researchers about the arguments advanced by both sides of the controversy. Second, Dwyer et al. make a series of suggestions on how potentially hurtful traditional terms can easily and accurately be replaced with alternatives. Contrasting autistics with “normal” controls or “healthy” controls could easily be replaced with contrasting autistics with nonautistics or neurotypicals. Comorbid could be replaced with co-occurring when talking about commonly seen conditions such as anxiety or gastrointestinal distress. Disorder (which is embodied in the individual) might often be replaced by disability that takes into consideration societal and environmental factors. Third, we do not intend to mandate “acceptable” language for articles published in Autism Research. However, we would ask that all authors make every effort to use language that is respectful of the individuals they are attempting to study, understand and support. Dwyer's article title, “First do not harm…” is a good starting point for promoting thoughtful and respectful autism language and for encouraging our authors to “have empathy for how their language sounds to autistic people.” Fourth, we encourage researchers to include and engage autistic individuals and families from all parts of the spectrum in their studies. Regardless of the language that is used and the controversies surrounding vocabulary and terminology, the goal of our research is to improve the quality of life for all autistic individuals. Finally, as we are asking our authors to use language respectful of their autistic research participants, we would encourage those who espouse the principles of neurodiversity to be respectful of autism clinicians and scientists. We hear increasingly that autism researchers are declining opportunities to speak in public or are even considering leaving autism research altogether because they fear heckling or worse. This is not right and ultimately will be harmful to the autism community. As Singer et al. (2022) have stated, “There does not need to be a battle between the two viewpoints around autism vocabulary; there is room across the spectrum to acknowledge that autism can be a state of being for some, an impairing condition for others and somewhere in between for many.”