How should autism be described? A study of the UK’s autism community

From Autism

How should we describe autism? How should terminology define it? How should we refer to those affected? These questions have been the subject of great debate within the autism community, especially in light of the revisions to definitions in the influential Diagnostic and Statistical Manual of Mental Disorders.

This article seeks to address these fundamental questions. The researchers surveyed nearly 3,500 members of the UK’s autism community- autistic people, parents and their broader support network.

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.

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Article details
Lorcan Kenny, Caroline Hattersley, Bonnie Molins, Carole Buckley, Carol Povey, and Elizabeth Pellicano
Which terms should be used to describe autism? Perspectives from the UK autism community
Autism 1362361315588200, first published on July 1, 2015 doi:10.1177/1362361315588200

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Two of the researchers, Lorcan Kenny and Carol Povey, were interviewed on their research as part of Autism Matters, the official podcast series for the journal. They were asked what their research findings mean for the future of autism terminologies and definitions and their advice about the language that should be used when speaking to people affected.

 

     
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