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      Whose Expertise Is It? Evidence for Autistic Adults as Critical Autism Experts

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          Abstract

          Autistic and non-autistic adults’ agreement with scientific knowledge about autism, how they define autism, and their endorsement of stigmatizing conceptions of autism has not previously been examined. Using an online survey, we assessed autism knowledge and stigma among 636 adults with varied relationships to autism, including autistic people and nuclear family members. Autistic participants exhibited more scientifically based knowledge than others. They were more likely to describe autism experientially or as a neutral difference, and more often opposed the medical model. Autistic participants and family members reported lower stigma. Greater endorsement of the importance of normalizing autistic people was associated with heightened stigma. Findings suggest that autistic adults should be considered autism experts and involved as partners in autism research.

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

          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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            On the ontological status of autism: the ‘double empathy problem’

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              Deficit, difference, or both? Autism and neurodiversity.

              The neurodiversity movement challenges the medical model's interest in causation and cure, celebrating autism as an inseparable aspect of identity. Using an online survey, we examined the perceived opposition between the medical model and the neurodiversity movement by assessing conceptions of autism and neurodiversity among people with different relations to autism. Participants (N = 657) included autistic people, relatives and friends of autistic people, and people with no specified relation to autism. Self-identification as autistic and neurodiversity awareness were associated with viewing autism as a positive identity that needs no cure, suggesting core differences between the medical model and the neurodiversity movement. Nevertheless, results suggested substantial overlap between these approaches to autism. Recognition of the negative aspects of autism and endorsement of parenting practices that celebrate and ameliorate but do not eliminate autism did not differ based on relation to autism or awareness of neurodiversity. These findings suggest a deficit-as-difference conception of autism wherein neurological conditions may represent equally valid pathways within human diversity. Potential areas of common ground in research and practice regarding autism are discussed.
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                Author and article information

                Contributors
                Journal
                Front Psychol
                Front Psychol
                Front. Psychol.
                Frontiers in Psychology
                Frontiers Media S.A.
                1664-1078
                28 March 2017
                2017
                : 8
                : 438
                Affiliations
                [1] 1Psychology, College of Staten Island and The Graduate Center, City University of New York New York, NY, USA
                [2] 2College of Social Sciences and International Studies, University of Exeter Exeter, UK
                [3] 3Educational Psychology, University of California at Los Angeles Los Angeles, CA, USA
                Author notes

                Edited by: Jessica S. Horst, University of Sussex, UK

                Reviewed by: Teresa Tavassoli, University College London, UK; Yoshifumi Ikeda, Joetsu University of Education, Japan

                *Correspondence: Kristen Gillespie-Lynch, kgillyn@ 123456gmail.com

                This article was submitted to Developmental Psychology, a section of the journal Frontiers in Psychology

                Article
                10.3389/fpsyg.2017.00438
                5368186
                28400742
                ece0efbf-cc7a-44fe-9834-9e6d9bc8ac88
                Copyright © 2017 Gillespie-Lynch, Kapp, Brooks, Pickens and Schwartzman.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

                History
                : 10 August 2016
                : 09 March 2017
                Page count
                Figures: 0, Tables: 7, Equations: 0, References: 92, Pages: 14, Words: 0
                Categories
                Psychology
                Original Research

                Clinical Psychology & Psychiatry
                autism,knowledge,stigma,neurodiversity,autistic expertise
                Clinical Psychology & Psychiatry
                autism, knowledge, stigma, neurodiversity, autistic expertise

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