Autism Terminology Preferences Among Autistic and Non-Autistic Adults in North America

Abstract

Background:

There is widespread debate about the language used to describe autistic people; many professionals prefer person-first language (e.g., “person with autism”), and many autistic people prefer identity-first language (e.g., “autistic person”). Although prior surveys of the autism community’s terminology preferences have reported participants’ evaluations of individual terms, limited research has directly compared evaluations of discrete categories of identity- and person-first terms. Additionally, there is a need to more fully understand participants’ evaluations of terms relevant to autistic people outside of the identity- and person-first debate.

Methods:

In total, 784 North American adults (N_autistic = 611; 78%) evaluated two identity-first terms (“autistic” and “autistic person”) and five person-first terms (“person with autism,” “person with autism spectrum disorder,” “person with autism spectrum condition,” “person on the autism spectrum,” and “person diagnosed with autism”). Participants reported which terms they would use, ranked the terms in order of their preference, and rated how much they liked each term and how offensive each term was. In open-ended responses, participants explained their highest and lowest rankings and provided definitions of (the autism) “spectrum,” “high functioning,” and “low functioning.”

Results:

Both autistic and non-autistic participants were more likely to use identity-first terms than person-first terms, ranked identity-first terms more highly than person-first terms, and liked identity-first terms more than person-first terms. Participants’ open-ended responses provided some context for the quantitative findings and highlighted their critical views of functioning labels.

Conclusion:

Consistent with other recent work with different samples and different methodologies, the North American participants in the current study preferred identity-first terms over person-first terms. That said, there was variability, with some autistic and non-autistic participants strongly preferring person-first terms. We end by providing recommendations on incorporating our findings into future research and practice.

Community Brief

Why is this an important issue?

The words that are used to describe groups of people can influence how others view and treat those groups. Autistic people should have a say in the words that are used to describe them, so it is important to know how autistic people want to be talked about.

What was the purpose of this study?

The purpose of this study was to learn more about what autistic people think about words used to talk about autistic people. We also asked non-autistic people who know autistic people about their opinions to see if these opinions were similar or different from autistic people’s opinions.

What did the researchers do?

We conducted a survey with 784 adults (611 of whom were autistic) living in North America. In the survey, the adults shared their opinions about two identity-first terms (“autistic” and “autistic person”) and five person-first terms (“person with autism,” “person with autism spectrum disorder,” “person with autism spectrum condition,” “person on the autism spectrum,” and “person diagnosed with autism”). They told the researchers which terms they would use, which terms were their favorite and least favorite terms (and why), how much they liked each term, and how offensive each term was. The adults in this study also shared what (the autism) “spectrum,” “high functioning,” and “low functioning” meant to them.

What were the results of the study?

Most of the people in this study preferred identity-first language more than person-first language: They liked identity-first language more, used it more, and ranked it more highly than person-first language. There was some variety in people’s opinions, so not everyone liked identity-first language better than person-first language. Most participants had negative opinions of functioning labels such as “high functioning” and “low functioning,” and they defined the autism “spectrum” in many different ways.

What do these findings add to what was already known?

These findings can help us be more confident that autistic people, overall, prefer identity-first terms. We also learned about some of the reasons for participants’ opinions about autism-related language. This information can help people make decisions about how to talk about autistic people. Our findings provide a deeper understanding of autism-related terminology preferences.

What are potential weaknesses in the study?

Most participants in this study were English-speaking, non-Hispanic White autistic adults who primarily use speech to communicate. Future surveys with people who speak languages other than English and people who do not primarily use speech to communicate would help us learn more about the perspectives of autistic people.

How will these findings help autistic adults now or in the future?

These findings can help bring more attention to the perspectives and preferences of autistic adults, who have expressed that they prefer identity-first terms more than person-first terms. These findings can also serve as a resource for people who do not know what terms to use when talking about autistic people.