den Houting Jacquiline, Higgins Julianne, Isaacs Kathy, Mahony Joanne, Pellicano Elizabeth
Macquarie School of Education, Macquarie University, Sydney, NSW, Australia.
Cooperative Research Centre for Living With Autism (Autism CRC), Brisbane, QLD, Australia.
Front Psychol. 2022 Aug 25;13:876990. doi: 10.3389/fpsyg.2022.876990. eCollection 2022.
Autistic people, and other community stakeholders, are gaining increasing recognition as valuable contributors to autism research, resulting in a growing corpus of participatory autism research. Yet, we know little about the ways in which stakeholders practice and experience community engagement in autism research. In this study, we interviewed 20 stakeholders (academics, autistic people, family members/careers, research students, and service providers) regarding their experiences of community engagement in Australian autism research. Through reflexive thematic analysis of interview data, we generated four themes. First, our participants perceived academia as an "ivory tower," disconnected from community members' lives and priorities. Second, our participants identified that different stakeholders tended to hold different roles within their research projects: academics typically retained power and control, while community members' roles tended toward tokenism. Third, our participants spoke of the need to "bridge the gap" between academia and the community, highlighting communication, accessibility, and planning as key to conducting effective participatory research. Lastly, participants emphasized the changing nature of autism research, describing participatory research as "the way of the future." Our findings reflect both the progress achieved to date, and the challenges that lie ahead, as the field advances toward genuine co-production of autism research.
自闭症患者及其他社区利益相关者作为自闭症研究的重要贡献者越来越受到认可，这使得参与式自闭症研究的文献不断增多。然而，我们对利益相关者参与自闭症研究的实践方式和体验知之甚少。在本研究中，我们采访了20位利益相关者（学者、自闭症患者、家庭成员/照顾者、研究生和服务提供者），了解他们在澳大利亚自闭症研究中参与社区活动的经历。通过对访谈数据进行反思性主题分析，我们得出了四个主题。首先，我们的参与者认为学术界是一座“象牙塔”，与社区成员的生活和优先事项脱节。其次，我们的参与者发现，不同的利益相关者在他们的研究项目中往往扮演不同的角色：学者通常保留权力和控制权，而社区成员的角色往往流于形式。第三，我们的参与者谈到需要在学术界和社区之间“架起桥梁”，强调沟通、可及性和规划是开展有效参与式研究的关键。最后，参与者强调了自闭症研究性质的变化，将参与式研究描述为“未来的方向”。随着该领域朝着真正的自闭症研究共同生产迈进，我们的研究结果既反映了迄今为止取得的进展，也反映了未来面临的挑战。
