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2015-Kenny-Terms-To AUT0010.1177/1362361315588200AutismKenny et al. 588200research-article2015 Original Article Autism 1 –21 Which terms should be used to describe © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav autism? Perspectives from the UK DOI: 10.1177/1362361315588200 autism community aut.sagepub.com Lorcan Kenny1, Caroline Hattersley2,3, Bonnie Molins2, Carole Buckley4, Carol Povey2 and Elizabeth Pellicano1,5 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. Keywords autism, terminology, disability, neurodiversity, quality of life Members of the autism community – autistic people, their The scientific and medical community’s understanding family and friends and broader support networks – often of what autism is has changed dramatically throughout the disagree over how to describe autism, as the many discus- last century. The term, ‘autism’, initially coined by a Swiss sions in print and on online forums attest (Brown, 2011a, psychiatrist to describe a subset of symptoms in schizo- 2011b; Durbin-Westby, 2009; Snow, 2006). Tensions sur- phrenia (Bleuler, 1911), was first used by Kanner in his rounding the language of autism are attributable, in part, to report of 11 children with what appeared to be a distinct the very different ways that autism touches people’s lives; childhood psychiatric syndrome, ‘infantile autism’ some experience it personally, others through their chil- (Kanner, 1943). Although once hailed as an emotional dren and others still might only encounter autism in some disorder stemming from parental rejection (Bettleheim, aspects of their lives – at school, at work, in the commu- nity or through friends and family. They are also partly due 1 Centre for Research in Autism and Education, UCL Institute of to debates and disagreements within the scientific commu- Education, University College London, UK nity regarding how best to conceptualise autism and partly 2The National Autistic Society, UK 3 a consequence of the growing prominence of disability Providence Row, UK 4Royal College of General Practitioners, UK rights and neurodiversity movements. Whatever the cause, 5School of Psychology, University of Western Australia, Australia the language that we use has the power both to reflect and to shape people’s perceptions of autism. In this study, we Corresponding author: Elizabeth Pellicano, Centre for Research in Autism and Education elicited the views and preferences of members of the UK’s (CRAE), UCL Institute of Education, University College London, autism community to understand the terms they use to 55–59 Gordon Square, London WC1H 0NU, UK. describe autism and their rationale for doing so. Email: [email protected] Downloaded from aut.sagepub.com by guest on September 27, 2015 2 Autism 1967; Kanner, 1949), amassing research evidence estab- members of these communities acknowledge that the lishing the validity of the condition led to its inclusion in underlying sentiments are laudable, they nevertheless the third edition of the Diagnostic and Statistical Manual argue such language functions to belittle the experience of of Mental Disorders (DSM-III; APA, 1987), formally rec- those who live with the disability and precludes the possi- ognising it as a medical condition. Since this time, the bility of pride in a person’s identity (Vaughan, 1993, 1997). behaviourally defined diagnostic criteria have undergone They further suggest that person-first language violates the radical changes, with the recent changes to the fifth edition common principle that positive pronouns should precede of the Diagnostic and Statistical Manual of Mental nouns. One would never say, for example, ‘people who are Disorders (DSM-5; APA, 2013) being no exception. In beautiful’ or ‘people with intelligence’. Violating this gen- particular, the removal of Asperger’s syndrome as a sepa- eral principle in the specific case of disability not only rate category, subsumed under a single diagnosis of ‘autism makes the language cumbersome but also casts disability spectrum disorder’, caused a furore among researchers, in a negative light, as a ‘marred identity’ (Goffman, 1963). clinicians, autistic people and parents alike (Kite et al., The language prescribed for describing disability in gen- 2013; Linton et al., 2014; Volkmar and Reichow, 2013). eral may therefore not fit with the needs and preferences of These changes highlight that what we know and under- specific communities, or distinct groups within communi- stand about autism is constantly in flux and should affect ties (Vaughan, 1993; Zola, 1993). the way autism is perceived, understood and referred to in Some members of the autism community have similar broader society. reservations about the use of person-first language. One Differences in people’s social and ideological beliefs autism activitist, Jim Sinclair (1999), for example, objects about autism also impact on the language they use to to such language on the basis that an autistic person can describe the condition. These beliefs have shifted in recent never, and should never attempt to, be separated from their years, in part due to the efforts of the broader disability autism. Sinclair instead defends what is known as disabil- rights movement. This movement was born out of frustra- ity-first or identity-first language (e.g. deaf person, autistic tion with considering disability as a medical condition – a person) (see also Dekker, 2011), which adheres to the gen- condition in need of being ‘fixed’, cured or even prevented eral principle of placing positive pronouns in front of (Barnes et al., 1999; Charlton, 1998). Proponents of disa- nouns and thus does not imply that autism is intrinsically bility rights argued that embedding disability within a negative (Brown, 2011b; Halmari, 2011). medical model perpetuates a perception that people with This disability-first language aligns with those autism disabilities are subject to unfortunate circumstances, must community members who perceive their diagnosis (or depend on others for help and should forgo some auton- their child’s diagnosis) to be an accepted aspect of their omy in selecting their own life course, which they argue identity (Davidson and Henderson, 2010; Hurlburt and can be deeply dehumanising and can evoke unwanted pity Chalmers, 2002) and marks their inclusion in a community (e.g. Oliver, 1990; Shapiro, 1993; Williams, 1996). Instead, (Bagatell, 2010). These views can be consistent with the they emphasise a more socially inclusive view of disabil- notion of ‘neurodiversity’ (Singer, 1999), in which autism ity, one that asserts that the extent to which a person is is considered one (neurological) form within a diversity of disabled is not entirely due to their own ‘condition’ but is, human minds (Nicolaidis, 2012; Robertson, 2010). The in part, created by the way in which a society responds (or neurodiversity movement eschews negative language such fails to respond) to people’s particular needs or require- as ‘disorder’, ‘deficit’ and ‘impairment’, instead preferring ments (Baker, 2011; Oliver, 1990). descriptions of autism as a way of being. Some researchers Advocacy groups influenced by this movement have (e.g. Baron-Cohen, 2000) also acknowledge the poten- sought to realign public perceptions of disability within tially disparaging nature of the term disorder and have this sociocultural framework. They encourage people to called for the term to be replaced with the putatively less- communicate about disability using language that pro- negative term, ‘condition’. The very limited research on motes autonomy and creates more positive identities for neurodiversity has shown that the more people report to be those being described. Initial efforts along these lines led aligned to notions of neurodiversity, the greater preference to a campaign for the use of person-first language – that is, they show for disability-first language, although this pref- language that refers to people first as individuals and then erence was not associated with a concomitant reduction in to their disability only if necessary (Bailey, 1991; Blaska, the acknowledgement of ‘deficits’ in autism (Kapp et al., 1993). Terms such as ‘disabled person’ and ‘the disabled’ 2012). were held to give undue prominence
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