Anti-ableist language is fully compatible with high-quality autism research: Response to Singer et al. (2022)

Natri, Heini M.; Abubakare, Oluwatobi; Beaud, Flavien; Botha, Monique; Bottema‐Beutel, Kristen; Brown, Lydia X. Z.; Burr, Daisy A.; Cobbaert, Laurence; Dabbs, Chris; Denome, Donnie; Edwards, Beth; Flower, Rebecca; Gassner, Dena; Onaiwu, Morénike Giwa; Grant, Aimee; Hundt, Andrew; Kapp, Steven K.; Tidd, Jennifer Litton; Manalili, Marie Adrienne Robles; Morton, Hannah; Nair, V. P.; Pavlopoulou, Georgia; Pearson, Amy; Porter, Hattie; Poulsen, Rebecca; Roux, Anne M.; Russell, Mary E.; Ryan, Jackie; Sasson, Noah J.; VanUitert, Victoria J.; Williams, Zachary J.; Woods, Richard D.; Zimmerman, Jordyn; Zisk, Alyssa Hillary

doi:10.31234/osf.io/3vjnq

Cited by 3 publications

(2 citation statements)

References 7 publications

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“…Engaging with autistic people on the language a study uses will mean that autistic people relate to and feel the benefit of studies. And, after all, it’s autistic people’s lives we’re trying to improve, so the response to worries about language shouldn’t be, ‘that’s just how it needs to be written’ (Natri et al, 2023).…”

Section: Meaningful Engagementmentioning

confidence: 99%

How the Moonshot Vision can unite autistic research and partnerships

Ellis,

Nicholls

2024

Autism

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Section: Meaningful Engagementmentioning

confidence: 99%

How the Moonshot Vision can unite autistic research and partnerships

Ellis,

Nicholls

2024

Autism

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“…It is unfortunate that the letter to the editor led by Heini Natri (2023), and signed by many advocates, misrepresents and distorts the main message of Singer et al (2023). The authors of the letter claim that Singer et al dictates use of specific terms, like “severe,” “profound” and “challenging.” (4th paragraph) This is, in fact, the opposite of what the commentary calls for.…”

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confidence: 99%

Response to Natri

Singer¹,

Escher²,

Lutz

et al. 2023

Autism Research

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It is unfortunate that the letter to the editor led by Heini Natri (2023), and signed by many advocates, misrepresents and distorts the main message of Singer et al. (2023). The authors of the letter claim that Singer et al. dictates use of specific terms, like "severe," "profound" and "challenging." (4th paragraph) This is, in fact, the opposite of what the commentary calls for. Singer et al. argues that there should be no list of approved or required terms and criticizes papers that call for such lists. The title of the commentary calls for a "full semantic toolbox" with no terms either required or banned. We urge readers to read the Commentary for themselves.

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‘We have so much to offer’: Community members’ perspectives on autism research

Haar,

Brownlow,

Hall

et al. 2024

Autism

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Autism research is on the cusp of significant change. There are mounting calls from Autistic self-advocates, researchers, and other scientists for a paradigm shift in autism research. Yet little is known about what non-academic members of the Autistic and autism communities think about autism research. We – a team of Autistic and non-autistic researchers – addressed this gap by conducting a secondary analysis of data collected as part of an in-depth research priority-setting exercise in Australia. Specifically, we asked: what are community members’ views and experiences of autism research? In immersive online text-based focus-group discussions held over 10 days, 55 community members, including Autistic people, family members, and professionals, shared their perspectives and experiences of autism research. We analysed the data using reflexive thematic analysis, adopting an inductive approach. Respondents resoundingly agreed that autism research could play a powerful role in helping to shape good Autistic lives, yet they felt that to do that effectively, major changes were needed. These included a shift away from overly narrow, deficits-based views of Autistic people to a greater focus on contextual factors, and more community-led decisions in what is researched and how. These findings highlight new possibilities for research processes, findings, and translation. Lay Abstract Autism research is changing. Autistic activists and researchers want Autistic people in the community to have more of a say about what is researched and how. But we haven’t asked people in the community what they think. This study used the information obtained from 55 community members, including Autistic people, their families, and professionals working with Autistic people, from an existing study on their priorities for autism research. We re-looked at what was said to see if we could understand community members’ views and experiences of autism research. People agreed strongly that research can play a powerful role in shaping good Autistic lives. They also felt that big changes were needed for research to do this. Some of these changes were that researchers should stop thinking about autism narrowly and in a negative way, where Autistic people are seen as the problem. Researchers need to think more about how to improve systems, experiences and how other people respond to Autistic people. They also want the autism community to be more involved in what is researched and how it is researched. The findings from our study here highlight the potential for research to be positive when Autistic people and their families are listened to, approached with understanding, and are respected and valued as individuals in the research process.

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Anti-ableist language is fully compatible with high-quality autism research: Response to Singer et al. (2022)

Cited by 3 publications

References 7 publications

How the Moonshot Vision can unite autistic research and partnerships

How the Moonshot Vision can unite autistic research and partnerships

Response to Natri

‘We have so much to offer’: Community members’ perspectives on autism research

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