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      Participatory autism research with students at a UK university: evidence from a small-scale empirical project

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          There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

          Abstract

          Purpose

          The purpose of this paper is to address the benefits of a participatory approach to autism research, demonstrating the positive effects of giving autistic project assistants (PAs) the opportunity to design and undertake a project researching the experiences of autistic university students.

          Design/methodology/approach

          A participatory approach was implemented, engaging autistic university students as research assistants. All the research team except project co-ordinators were autistic. Undergraduate autistic students developed and conducted a set of semi-structured interviews, with two autistic alumni responsible for data analysis and both scheduling and moderating focus groups. Participation in dissemination of the findings was open to all.

          Findings

          The results included in this paper reflect a portion of the overall findings, specifically regarding the participatory approach. The findings of the study indicate the perceptions of respondents being interviewed by autistic researchers in relation to their shared understanding, facilitating positive feelings and a sense of rapport in the interview process. The PAs were able to improve their research skills through the project, which contributed constructively to their CV and allowed them to feel more positive about being autistic, and specifically about being an autistic researcher.

          Originality/value

          This paper is one of the first to discuss the challenges and benefits of including autistic participant researchers at all stages of the research project, including research design, data collection, analysis and dissemination, being co-written by both project co-ordinators and autistic project researchers.

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          Most cited references 20

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          Parasites, Pawns and Partners: Disability Research and the Role of Non-Disabled Researchers

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            Autistic expertise: a critical reflection on the production of knowledge in autism studies.

             Damian Milton (2014)
            The field of autism studies is a highly disputed territory within which competing contradictory discourses abound. In this field, it is the voices and claims of autistic people regarding their own expertise in knowledge production concerning autism that is most recent in the debate, and traditionally the least attended to. In this article, I utilise the theories of Harry Collins and colleagues in order to reflect upon and conceptualise the various claims to knowledge production and expertise within the field of autism studies, from the perspective of an author who has been diagnosed as being on the autism spectrum. The notion that autistic people lack sociality is problematised, with the suggestion that autistic people are not well described by notions such as the 'social brain', or as possessing 'zero degrees of cognitive empathy'. I then argue, however, that there is a qualitative difference in autistic sociality, and question to what extent such differences are of a biological or cultural nature, and to what extent interactional expertise can be gained by both parties in interactions between autistic and non-autistic people. In conclusion, I argue that autistic people have often become distrustful of researchers and their aims, and are frequently frozen out of the processes of knowledge production. Such a context results in a negative feedback spiral with further damage to the growth of interactional expertise between researchers and autistic people, and a breakdown in trust and communication leading to an increase in tension between stakeholder groups. The involvement of autistic scholars in research and improvements in participatory methods can thus be seen as a requirement, if social research in the field of autism is to claim ethical and epistemological integrity.
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              Bridging autism, science and society: moving toward an ethically informed approach to autism research.

              Recent developments in the science of autism have provoked widespread unease among autism activists. Drawing on the findings of a major international gathering of researchers, ethicists, and activists, this paper presents the first major analysis of the ethical questions arising from this unease. We outline the scientific developments that have provoked the most discomfort, analyze the response to these developments from within and without the autism community, and trace the current state of the ethical debate. Having done so, we contend that these ethical questions are unlikely to be resolved as they depend on fundamentally conflicting assumptions about the nature and desirability of neurocognitive difference. We conclude by arguing for a new range of democratic mechanisms that could enable the scientific community, autistics, and other concerned parties to respond collectively to such entrenched ethical disputes. Copyright © 2011, International Society for Autism Research, Wiley-Liss, Inc.
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                Author and article information

                Contributors
                Journal
                AIA
                10.1108/AIA
                Advances in Autism
                AIA
                Emerald Publishing
                2056-3868
                21 March 2019
                : 5
                Issue : 2 Issue title : Inclusive educational practice for autistic learners Issue title : Inclusive educational practice
                : 84-93
                Affiliations
                POLSIS, University of Birmingham , Birmingham, UK
                School of Education, University of Birmingham , Birmingham, UK
                University of Birmingham , Birmingham, UK
                Author notes
                Kenneth Andrew Searle can be contacted at: searleken@hotmail.co.uk
                Article
                621256 AIA-05-2018-0018.pdf AIA-05-2018-0018
                10.1108/AIA-05-2018-0018
                © Emerald Publishing Limited
                Page count
                Figures: 0, Tables: 0, Equations: 0, References: 22, Pages: 10, Words: 5994
                Product
                Categories
                research-article, Research paper
                cat-HSC, Health & social care
                cat-LID, Learning & intellectual disabilities
                Custom metadata
                yes
                yes
                JOURNAL
                included

                Health & Social care

                Participatory research, Research design, Higher education, Autism, Inclusion

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