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Making the future together: Shaping autism research through meaningful participation

Participatory research methods connect researchers with relevant communities to achieve shared goals. These methods can deliver results that are relevant to people’s lives and thus likely to have a positive impact. In the context of a large and growing body of autism research, with continued poor im...

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Autores principales: Fletcher-Watson, Sue, Adams, Jon, Brook, Kabie, Charman, Tony, Crane, Laura, Cusack, James, Leekam, Susan, Milton, Damian, Parr, Jeremy R, Pellicano, Elizabeth
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2018
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6512245/
https://www.ncbi.nlm.nih.gov/pubmed/30095277
http://dx.doi.org/10.1177/1362361318786721
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author Fletcher-Watson, Sue
Adams, Jon
Brook, Kabie
Charman, Tony
Crane, Laura
Cusack, James
Leekam, Susan
Milton, Damian
Parr, Jeremy R
Pellicano, Elizabeth
author_facet Fletcher-Watson, Sue
Adams, Jon
Brook, Kabie
Charman, Tony
Crane, Laura
Cusack, James
Leekam, Susan
Milton, Damian
Parr, Jeremy R
Pellicano, Elizabeth
author_sort Fletcher-Watson, Sue
collection PubMed
description Participatory research methods connect researchers with relevant communities to achieve shared goals. These methods can deliver results that are relevant to people’s lives and thus likely to have a positive impact. In the context of a large and growing body of autism research, with continued poor implementation, and some evidence of community dissatisfaction, there is a powerful case for participatory autism research. In order to develop a framework for such collaborative working, a UK seminar series was organised and co-produced by autistic and non-autistic people with academic, practitioner and lived expertise. This article reports on the outcomes from the series, identifying five topics relevant to building a community of practice in participatory research: Respect, Authenticity, Assumptions, Infrastructure and Empathy. Each topic is connected to a specific example from within and beyond research, to inspire new practices in the field. We call for the development of participatory research skills among the autism research community and the facilitation of greater autistic leadership of, and partnership in, research. Such work, if delivered to a high standard, is likely to lead to better translation into practice and improved outcomes for autistic people and those who support them.
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spelling pubmed-65122452019-06-12 Making the future together: Shaping autism research through meaningful participation Fletcher-Watson, Sue Adams, Jon Brook, Kabie Charman, Tony Crane, Laura Cusack, James Leekam, Susan Milton, Damian Parr, Jeremy R Pellicano, Elizabeth Autism Original Articles Participatory research methods connect researchers with relevant communities to achieve shared goals. These methods can deliver results that are relevant to people’s lives and thus likely to have a positive impact. In the context of a large and growing body of autism research, with continued poor implementation, and some evidence of community dissatisfaction, there is a powerful case for participatory autism research. In order to develop a framework for such collaborative working, a UK seminar series was organised and co-produced by autistic and non-autistic people with academic, practitioner and lived expertise. This article reports on the outcomes from the series, identifying five topics relevant to building a community of practice in participatory research: Respect, Authenticity, Assumptions, Infrastructure and Empathy. Each topic is connected to a specific example from within and beyond research, to inspire new practices in the field. We call for the development of participatory research skills among the autism research community and the facilitation of greater autistic leadership of, and partnership in, research. Such work, if delivered to a high standard, is likely to lead to better translation into practice and improved outcomes for autistic people and those who support them. SAGE Publications 2018-08-10 2019-05 /pmc/articles/PMC6512245/ /pubmed/30095277 http://dx.doi.org/10.1177/1362361318786721 Text en © The Author(s) 2018 http://creativecommons.org/licenses/by/4.0/ This article is distributed under the terms of the Creative Commons Attribution 4.0 License (http://www.creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Original Articles
Fletcher-Watson, Sue
Adams, Jon
Brook, Kabie
Charman, Tony
Crane, Laura
Cusack, James
Leekam, Susan
Milton, Damian
Parr, Jeremy R
Pellicano, Elizabeth
Making the future together: Shaping autism research through meaningful participation
title Making the future together: Shaping autism research through meaningful participation
title_full Making the future together: Shaping autism research through meaningful participation
title_fullStr Making the future together: Shaping autism research through meaningful participation
title_full_unstemmed Making the future together: Shaping autism research through meaningful participation
title_short Making the future together: Shaping autism research through meaningful participation
title_sort making the future together: shaping autism research through meaningful participation
topic Original Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6512245/
https://www.ncbi.nlm.nih.gov/pubmed/30095277
http://dx.doi.org/10.1177/1362361318786721
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