An Expert Roundtable Discussion on Experiences of Autistic Autism Researchers

Dwyer, Patrick; Acevedo, Sara M.; Brown, Heather; Grapel, Jordan; Jones, Sandra C.; Nachman, Brett Ranon; Raymaker, Dora; Williams, Zachary J.

doi:10.1089/aut.2021.29019.rtb

Cited by 22 publications

(8 citation statements)

References 25 publications

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“…In writing about their experience as an autistic academic and activist, Botha (2021) describes regularly encountering dehumanizing, objectifying, and violent content and attitudes. Other autistic academics (Yergeau, 2013;Raymaker, 2019;Dwyer et al, 2021) have similarly described how the harmful and ableist nature of autism research has detrimentally impacted their experiences of academia, an experience that the first author of this manuscript shares. The autism research field is permeated by systemic violence against autistic people, ranging from ableist language (Bottema-Beutel et al, 2021) to efforts to prevent autism (e.g., Qiu et al, 2022).…”

Section: Discussionmentioning

confidence: 95%

From ivory tower to inclusion: Stakeholders’ experiences of community engagement in Australian autism research

et al. 2022

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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.

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Section: Discussionmentioning

confidence: 95%

From ivory tower to inclusion: Stakeholders’ experiences of community engagement in Australian autism research

et al. 2022

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“…Therefore, our training failed to respond to growing calls from the autistic community that the voices of autistic people who have traditionally been left out of discourse about autism must be prioritized (e.g. Autistic Self Advocacy Network, 2021; Chapman & Veit, 2020; Dwyer et al, 2021). Future adaptations of trainings like ours should include meaningful leadership opportunities for autistic people who are marginalized in multiple ways.…”

Section: Discussionmentioning

confidence: 99%

“…Nor were they well-represented in the training we developed, much as they haven't been well-represented in prior research about UD (e.g., Rao et al, 2017; but see Courchesne et al, 2021 for a promising example of the use of UD principles to capture the perspectives of autistic youth with diverse cognitive and communicative skills). Therefore, our PARTICIPATORY AUTISM & UD FACULTY TRAINING 25 training failed to respond to growing calls from the autistic community that the voices of autistic people who have traditionally been left out of discourse about autism must be prioritized (e.g., Autistic Self Advocacy Network, 2021; Chapman & Veight, 2020;Dwyer et al, 2021). Future adaptations of trainings like ours should include meaningful leadership opportunities for autistic people who are marginalized in multiple ways.…”

Section: Limitations and Future Directionsmentioning

confidence: 97%

Learning from the experts: Evaluating a participatory autism and universal design training for university educators

Waisman

Williams

Cage

et al. 2022

Autism

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Autistic students experience strengths and challenges that can impact their full inclusion in higher education, including stigma. A participatory team of autistic and non-autistic scholars developed an autism and universal design (UD) training. This participatory approach centered the voices of autistic collaborators in training design and evaluation. Ninety-eight educators from 53 institutions across five countries completed assessments before training (pre-tests), 89 completed post-tests (after training), and 82 completed maintenance assessments (a month after post-test). Pre-test autism stigma was heightened among males, educators with less autism knowledge, and those who reported heightened social dominance orientation. Autism knowledge, autism stigma, and attitudes toward UD improved with training. Improvements remained apparent a month after post-test but were somewhat attenuated for knowledge and stigma. To the best of our knowledge, this is the first evidence of maintenance of benefits of an autism training over time. Participants’ main reason for enrolling in the study was to gain a better understanding about neurodiversity. Feedback indicates that this goal was reached by most with the added benefit of gaining understanding about UD. Results suggest that interest in one type of diversity (e.g. autism) can motivate faculty to learn UD-aligned teaching strategies that benefit diverse students more generally. Lay abstract Autistic university students have many strengths. They also go through difficulties that professors may not understand. Professors may not understand what college life is like for autistic students. They might judge autistic students. A team of autistic and non-autistic researchers made a training to help professors understand autistic students better. This training also gave professors ideas to help them teach all of their students. Ninety-eight professors did an online survey before the autism training. They shared how they felt about autism and teaching. Before our training, professors who knew more about autism appreciated autism more. Professors who thought people should be equal and women also appreciated autism more. Then, 89 of the professors did our training and another survey after the training. This helped us see what they learned from the training. They did one more survey a month later. This helped us see what they remembered. Our training helped professors understand and value autism. It also helped them understand how they can teach all students better. The professors remembered a lot of what we taught them. This study shows that a training that autistic people helped make can help professors understand their autistic students better.

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“…An autistic autism researcher undertook this study, and participants were autistic researchers from a wide range of disciplines, many of whom undertake research and/or advocacy in autism. As noted in a roundtable discussion on the experiences of autistic autism researchers, ‘no academic articles focusing on autistic scholars in autism research currently exist in the literature’ (Dwyer et al, 2021). The findings of this study support those of the exploratory questionnaire study of 12 autistic academics in the United Kingdom (Martin, 2021).…”

Section: Discussionmentioning

confidence: 99%

“…Going beyond the experiences of one individual, Martin (2021) reports on a questionnaire study that explored the experiences of 12 autistic researchers (doctoral students, part-time researchers and other non-permanent roles) and 'revealed barriers at every stage of the employment journey for autistic academics and highlighted relatively straightforward ways of circumventing them based on principles of Universal Design ' (p. 14). A recent autistic autism researchers' roundtable (Dwyer et al, 2021) reflected on several topics, including the importance of autistic and intersectional identities, ways in which autistic autism researchers can enhance the quality of autism research, tensions and conflicts that we face as autistic autism researchers, and ways in which inflexible institutions and practices can impose barriers that restrict autistic involvement in academia.…”

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confidence: 99%

Autistics working in academia: What are the barriers and facilitators?

Jones

2022

Autism

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Autistic people are under-represented in university student populations, but their numbers are growing, and the barriers to their inclusion are being recognised. Outside of the student body, autistic people in academia are often overlooked, although this is starting to change with the growth in inclusive autism research. However, they remain absent from the academic literature, despite the evident synergies between autistic strengths and academic careers. This study explored the perceptions of 37 autistic academics from various disciplines: what are the positives of working in academia for autistic people, and what are the negatives? Participants reported many positive aspects of an academic career, including the fit with the strengths, characteristics and motivations of autistic people. However, they also noted barriers and challenges – social, environmental and structural – many of which could be addressed by greater awareness and acceptance of autism. Given the considerable benefits that autistic teachers and researchers bring to higher education, there is a clear need for universities and colleges to implement changes to the physical and social environment to make academia more inclusive. Lay Abstract Academia appears to provide an ideal career option for autistic people: the opportunity to lock ourselves away in an ivory tower and utilise our extensive knowledge of a very specific topic. We know autistic people are underrepresented in postsecondary education, and there is a growing body of research on how to make universities more inclusive. What is missing from the literature is the voices of autistic people who have survived the university experience and gone on to become university teachers and researchers. Increasing the visibility of autistics in academia, and exploring the barriers and facilitators they experience in an academic career, is important to raise the aspirations of future university students and graduates. This study included 37 autistic academics from various disciplines and countries, exploring their perceptions of the positive and negative aspects of being an autistic in academia.

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An Expert Roundtable Discussion on Experiences of Autistic Autism Researchers

Cited by 22 publications

References 25 publications

From ivory tower to inclusion: Stakeholders’ experiences of community engagement in Australian autism research

From ivory tower to inclusion: Stakeholders’ experiences of community engagement in Australian autism research

Learning from the experts: Evaluating a participatory autism and universal design training for university educators

Autistics working in academia: What are the barriers and facilitators?

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