‘I’m not just a guinea pig’: Academic and community perceptions of participatory autism research

Abstract

Despite calls for increased community engagement in autism research, the published evidence base suggests that participatory autism research remains rare. This study examined the extent and nature of community engagement in Australian research projects commissioned by the Autism CRC. Data were gathered using an online survey, comprising quantitative scale items and qualitative free-text responses, which was completed by 64 academic partners and 15 community partners. Quantitative findings indicated that autism research stakeholders in Australia are largely supportive of community engagement in research and have had positive experiences of participatory research. These findings were not wholly corroborated by the qualitative findings, however, which suggested that participants lacked understanding of participatory research, and held attitudes that may hinder the conduct of successful participatory research. Systemic issues within research settings were also perceived to impede community engagement in research. Both academic and community partners would benefit from better understanding of participatory research approaches, paired with practical and epistemological shifts at the systemic level, to ensure that future community engagement in autism research is respectful, equitable and beneficial to all stakeholders. Lay abstract Participatory research means working together ( engaging) with the community that is affected by research to make decisions about that research. Participatory research is common in some fields, but it is still rare in autism research. In this study, we wanted to find out how Australian autism researchers and community members feel about participatory research. We worked with an Autistic Advisory Group to design this study, understand the results and write this article. We asked 127 people, all working on research from the Cooperative Research Centre for Living with Autism, to complete an online survey about participatory research. The survey included some questions that were answered on rating scales, and some where participants wrote their own answers. Seventy-nine people (64 researchers and 15 community members) completed most or all of the survey. The rating scales showed that most participants (82%) supported moderate or extensive community engagement in research, and most participants (72%) thought there should be more community engagement in autism research. In general, the participants rated their experiences of participatory research positively. Using the participants’ own written answers, we found four main ideas: (1) participatory research is important, but difficult; (2) many people do not fully understand what participatory research is; (3) academics and community members do not work together as = and (4) research systems are not designed for participatory research. Our results suggest that autism researchers and community members want to do more participatory research, but they might need training, support and funding to do participatory research well.

A Systematic Review of Play-Based Interventions Targeting the Social Communication Skills of Children with Autism Spectrum Disorder in Educational Contexts

“…This is especially important given the reported generalization (Carruthers et al, 2020;Ostmeyer & Scarpa, 2012;Rao et al, 2008) and maintenance (Bellini et al, 2007;Neely et al, 2016;Rogers, 2000) benefits of practice-based research. Thirdly, future research should consider seeking input from teachers, peers and also children with ASD, as reflected within broader participatory research recommendations (den Fletcher-Watson et al, 2019;Houting et al, 2020;Jivraj et al, 2014;Lau & Stille, 2014) and, consequently, add to the social validity of this evidence base. Fourthly, given that the vast majority of play-based interventions included in this review were based on predominately male samples across the UK and USA, future research may consider including more geographical and gender representative samples, as identified within other systematic reviews in the field (Gibson et al, 2020;Kossyvaki & Papoudi, 2016;Stiller & Mößle, 2018).…”

An Expert Roundtable Discussion on Experiences of Autistic Autism Researchers

“…Although the involvement of autistic community members in research teams is an important topic for the field, it has been discussed in other publications. [6][7][8][9][10][11] Furthermore, while the accessibility of university-based clinical programs (e.g., medical, education, social work, and clinical psychology) does affect the representation of autistic people in occupations that are responsible for providing important services and supports to autistic individuals, this is a distinct and separate topic from autism research. Finally, this roundtable does not explore experiences of autistic people conducting research in fields unrelated to autism.…”

A Call for Expanding the Diversity of Voices in Autism Research Engagement

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Recently, there has been a push to increase research engagement within the autism community. Historically, research engagement has largely focused on childhood disability research and participatory autism research remains rare (den Houting et al, 2021). This gap in the literature can often result in the substitution of parents' voices for those of their Autistic children within the framework of family-centred services.

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“…Résumé Récemment, la communauté de l'autisme a exercé des pressions pour accroître sa participation à la recherche. Historiquement, l'engagement de la recherche s'est largement concentré sur le handicap infantile, et la recherche participative sur l'autisme reste rare (den Houting et al, 2021).Cette lacune dans la littérature scientifique peut souvent entraîner la substitution des voix des parents à celles de leurs enfants autistes dans le cadre des services centrés sur la famille. Cet article soutient que l'engagement dans la recherche devrait être mené de manière à représenter la communauté de l'autisme dans son ensemble.…”

“…Résumé Récemment, la communauté de l'autisme a exercé des pressions pour accroître sa participation à la recherche. Historiquement, l'engagement de la recherche s'est largement concentré sur le handicap infantile, et la recherche participative sur l'autisme reste rare (den Houting et al, 2021).…”