Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2019 May;23(4):943-953.
doi: 10.1177/1362361318786721. Epub 2018 Aug 10.

Making the future together: Shaping autism research through meaningful participation

Sue Fletcher-Watson  1 , Jon Adams  2 , Kabie Brook  3 , Tony Charman  4 , Laura Crane  5 , James Cusack  6 , Susan Leekam  7 , Damian Milton  8   9 , Jeremy R Parr  10 , Elizabeth Pellicano  11
Affiliations

Making the future together: Shaping autism research through meaningful participation

Sue Fletcher-Watson et al. Autism. 2019 May.

Abstract

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.

Keywords: autism; community; disability rights; involvement; methods; participatory research.

PubMed Disclaimer

Figures

Figure 1.
Figure 1.
Current topics in participatory autism research.
See this image and copyright information in PMC

Similar articles

See all similar articles

Cited by

See all "Cited by" articles

References

    1. Alleva L. (2006) Taking time to savour the rewards of slow science. Nature 443(7109): 271. - PubMed
    1. Arnold L. (2012) Introduction to Autonomy: The Critical Journal of Interdisciplinary Autism Studies. Autonomy: The Critical Journal of Interdisciplinary Autism Studies 1(1): 1.
    1. Arnstein SR. (1969) A ladder of citizen participation. Journal of the American Institute of Planners 35(4): 216–224.
    1. Beardon L. (2017) Autism and Asperger Syndrome in Adults. London, Sheldon Press.
    1. Brett J, Staniszewska S, Mockford C, et al. (2014) Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expectations 17(5): 637–650. - PMC - PubMed

Publication types

LinkOut - more resources