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      Annual Research Review: Shifting from ‘normal science’ to neurodiversity in autism science

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          Abstract

          Since its initial description, the concept of autism has been firmly rooted within the conventional medical paradigm of child psychiatry. Increasingly, there have been calls from the autistic community and, more recently, nonautistic researchers, to rethink the way in which autism science is framed and conducted. Neurodiversity, where autism is seen as one form of variation within a diversity of minds, has been proposed as a potential alternative paradigm. In this review, we concentrate on three major challenges to the conventional medical paradigm – an overfocus on deficits, an emphasis on the individual as opposed to their broader context and a narrowness of perspective – each of which necessarily constrains what we can know about autism and how we are able to know it. We then outline the ways in which fundamental elements of the neurodiversity paradigm can potentially help researchers respond to the medical model’s limitations. We conclude by considering the implications of a shift towards the neurodiversity paradigm for autism science.

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          Most cited references193

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          The need for a new medical model: a challenge for biomedicine

          G. Engel (1977)
          The dominant model of disease today is biomedical, and it leaves no room within tis framework for the social, psychological, and behavioral dimensions of illness. A biopsychosocial model is proposed that provides a blueprint for research, a framework for teaching, and a design for action in the real world of health care.
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            Prevalence of co-occurring mental health diagnoses in the autism population: a systematic review and meta-analysis

            Co-occurring mental health or psychiatric conditions are common in autism, impairing quality of life. Reported prevalences of co-occurring mental health or psychiatric conditions in people with autism range widely. Improved prevalence estimates and identification of moderators are needed to enhance recognition and care, and to guide future research.
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              Which terms should be used to describe autism? Perspectives from the UK autism community.

              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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                Author and article information

                Contributors
                liz.pellicano@mq.edu.au
                Journal
                J Child Psychol Psychiatry
                J Child Psychol Psychiatry
                10.1111/(ISSN)1469-7610
                JCPP
                Journal of Child Psychology and Psychiatry, and Allied Disciplines
                John Wiley and Sons Inc. (Hoboken )
                0021-9630
                1469-7610
                03 November 2021
                April 2022
                : 63
                : 4 ( doiID: 10.1111/jcpp.v63.4 )
                : 381-396
                Affiliations
                [ 1 ] Macquarie School of Education Macquarie University Sydney NSW Australia
                [ 2 ] Cooperative Research Centre for Living with Autism (Autism CRC) Brisbane Qld Australia
                Author notes
                [*] [* ] Correspondence

                Elizabeth Pellicano, Macquarie School of Education, Macquarie University, 29 Wally’s W, Sydney, NSW 2109, Australia; Email: liz.pellicano@ 123456mq.edu.au

                Author information
                https://orcid.org/0000-0002-7246-8003
                Article
                JCPP13534
                10.1111/jcpp.13534
                9298391
                34730840
                583c4f0e-1f0d-43ab-ba35-1cf87e2c6937
                © 2021 The Authors. Journal of Child Psychology and Psychiatry published by John Wiley & Sons Ltd on behalf of Association for Child and Adolescent Mental Health.

                This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc/4.0/ License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.

                History
                : 06 September 2021
                Page count
                Figures: 0, Tables: 0, Pages: 16, Words: 14055
                Funding
                Funded by: Australian Research Council , doi 10.13039/501100000923;
                Award ID: FT190100077
                Funded by: Cooperative Research Centre for Living with Autism , doi 10.13039/100010433;
                Award ID: 0.11RS
                Categories
                Annual Research Review
                Annual Research Reviews
                Custom metadata
                2.0
                April 2022
                Converter:WILEY_ML3GV2_TO_JATSPMC version:6.1.7 mode:remove_FC converted:20.07.2022

                Clinical Psychology & Psychiatry
                autism,ethics,medical model,neurodiversity,social model of disability

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