How Should We Describe Autism? Perspectives from the UK Autism Community

Thursday, May 14, 2015: 1:45 PM
Grand Salon (Grand America Hotel)
L. Kenny1, C. Hattersley2,3, B. Molins3, C. Buckley4, C. Povey3 and E. Pellicano1, (1)Centre for Research in Autism and Education (CRAE), Institute of Education, London, United Kingdom, (2)Providence Row, London, United Kingdom, (3)The National Autistic Society, London, England, United Kingdom, (4)Royal College of General Practitioners, London, United Kingdom
Background: The language used to describe autism has undergone considerable changes since autism was first described. Changes have come from the medical and scientific communities, as diagnostic criteria and understanding of the condition have evolved, and from parent and self-advocacy groups, as the disability rights and neurodiversity movements have gained in prominence. These changes have been brought about partly due to important tensions in what people believe autism to be. Such changes also have important consequences as the way in which people choose to describe autism influences personal and societal perceptions of what the condition entails.

Objectives: We aimed to understand the current views and preferences of community members (autistic adults, parents and professionals) about the terms they use to describe autism, and to determine potential differences, if any, between community groups in the UK.

Methods: 3,808 people (aged 18 years and over), recruited largely through the database of the UK’s National Autistic Society, responded to an online survey. These included autistic adults, parents of people with autism, professionals and family members and friends. The survey asked participants (1) to identify, by selecting from a list, which terms they prefer to use when communicating about autism; (2) to identify which terms they would use to describe themselves or the person with autism that they live/work with/know; (3) to rate their preference for a series of terms used to describe autism on a 5-point scale; and (4) to specify, by selecting from a list, which one term they would use to describe autism. Finally, in an open question, participants were given an opportunity to provide comments relevant to the issue of describing autism.

Results: Examination of the quantitative data showed 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 (ASD)’ for which there was general agreement across community groups. Community members disagreed, however, on the use of several terms. The term ‘autistic’ was endorsed by a large percentage of autistic adults (61%), family members/friends (54%) and parents (50%) but by considerably fewer professionals (38%). In contrast, ‘person with autism’ was endorsed by almost 50% of professionals but only by 26% and 22% of autistic adults and parents, respectively. Analysis of the qualitative data provided reasons underlying these preferences, particularly for the lack of unanimity within community groups.

Conclusions: This study demonstrated for the first time that there is no single way of describing autism that is universally accepted and preferred by the UK’s autism community. Instead, autism is currently described in a multitude of ways, with little consistency across – and even within – community groups. The context in which language is used is paramount and goes some way to explaining the variety of terms used. These findings have important implications for how we describe autism in research, policy, clinical and colloquial terms.