Which terms should be used to describe autism? Perspectives from the UK autism community.
Ask each autistic client or caregiver which words they want—most autistic adults prefer “autistic,” yet many professionals still say “person with autism.”
01Research in Context
What this study did
Kenny et al. (2016) asked 3,500 people in the UK how they want autism to be described. The group included autistic adults, parents, and professionals.
They used an online survey with checklists and open boxes. People could pick or write the words they liked best.
What they found
No single label pleased everyone. Most autistic adults chose “autistic person.” Many parents and professionals still liked “person with autism.”
Because the split was sharp, the team said you must ask each person first.
How this fits with other research
Vassos et al. (2023) extends these numbers by showing why the split happens. Autistic adults who feel strong autism pride pick identity-first words. Those who face more stigma dislike those same words.
Ferenc et al. (2023) adds that the pride view links to higher self-esteem, giving a real-life reason to honor the word choice.
Cascio et al. (2020) turns the idea into action. Their ethics guide tells researchers to build studies around each participant’s chosen terms, moving from “ask” to “do.”
Why it matters
Language is part of rapport. Check preference at intake, write it in the chart, and use it in every report, goal, and parent email. The small step boosts trust and honors client identity.
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02At a glance
03Original abstract
Recent public discussions suggest that there is much disagreement about the way autism is and should be described. This study sought to elicit the views and preferences of UK autism community members - autistic people, parents and their broader support network - about the terms they use to describe autism. In all, 3470 UK residents responded to an online survey on their preferred ways of describing autism and their rationale for such preferences. The results clearly show that people use many terms to describe autism. The most highly endorsed terms were 'autism' and 'on the autism spectrum', and to a lesser extent, 'autism spectrum disorder', for which there was consensus across community groups. The groups disagreed, however, on the use of several terms. The term 'autistic' was endorsed by a large percentage of autistic adults, family members/friends and parents but by considerably fewer professionals; 'person with autism' was endorsed by almost half of professionals but by fewer autistic adults and parents. Qualitative analysis of an open-ended question revealed the reasons underlying respondents' preferences. These findings demonstrate that there is no single way of describing autism that is universally accepted and preferred by the UK's autism community and that some disagreements appear deeply entrenched.
Autism : the international journal of research and practice, 2016 · doi:10.1177/1362361315588200