Autism Terminology Preferences

Background: Understanding the terminology preferences of autism community members is an important step towards avoiding ableist language (Bottema-Beutel et al., 2020). For example, “person-first” language (i.e., “person with autism”) is common in scientific and popular discourse, but many Autistic self-advocates have criticized this in favor of “identity-first” language (i.e., “Autistic person”; Sinclair, 1999).

Given ongoing debates about the use of person-first versus identity-first language in publishing (Vivanti, 2020), documented differences in how these labels are perceived by Autistic and non-Autistic people (Kenny et al., 2015), and the potential that person-first labels may increase the stigma associated with autism (Gernsbacher, 2017), it is important to gain a widespread understanding of the terminology used and preferred by members of the autism community. Surveys of autism terminology preferences have been conducted in the UK (Kenny et al., 2015) and Australia (Bury et al., 2020), but to our knowledge, there have been no large-scale efforts to study this question in North America.

Objective: We conducted a large survey to investigate autism terminology preferences of people with a connection to autism in North America.

Method: In consultation with Autistic adults, we developed an online survey asking participants to indicate which terms they use, how likeable and offensive these terms are, and how they would rank them (from the label they like the most to the label they like the least). Free-text boxes allowed participants to explain their preferences.

The survey was distributed through national autism organizations and local chapters across the US and Canada, as well as on social media. 785 North American adults completed the survey (608 self-identified or with an autism diagnosis, 177 with a different connection to autism).