Making the future together: Shaping autism research through meaningful participation

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.

A Pilot Randomised Control Trial of Digitally-Mediated Social Stories for Children on the Autism Spectrum

“…Children on the autism spectrum can be strong visual learners and highly motivated by viewing images of the self on a computer screen (Wert and Neisworth 2003;Xin and Sutman 2011). As the SOFA-app was co-developed with the autism community, the involvement of those developing and delivering social stories in the design process would be expected to ensure that the technology provided the appropriate level of support for those using it (see Constantin et al 2017;Fletcher-Watson et al 2019;Parsons et al 2019;Smith et al 2020).…”

‘When my autism broke’: A qualitative study spotlighting autistic voices on menopause

“…Through means of an online focus group with autistic participants, we aimed in this pilot investigation to explore how autistic individuals perceive the extant state of knowledge around menopause in autism; whether they believe the menopause might pose particular challenges for autistic people above non-autistic experiences; what kind of support might be needed; and, given the importance of participatory research (Fletcher-Watson et al, 2018), what kind of questions should guide future research.…”

Residential Care for Older Autistic Adults: Insights from Three Multiexpert Summits

“…The involvement of autistic people, their allies, and other members of the autism community in research is becoming increasingly recognized as best practice in the field and exemplified by equal partnerships between academic and community representatives. 28,29 The research team comprised two psychologists and two autistic research consultants, all with an interest in the needs of older autistic adults. Together, we hosted a multiexpert group of 14 individuals, bringing together older autistic adults, siblings and children of older autistic adults, researchers and clinicians specializing in autism and in old age, autism service providers, and older age residential care service providers to create a diverse group with different expertise and experiences.…”