Improving research about us, with us: a draft framework for inclusive autism research
By Nick Chown, Jackie Robinson, Luke Beardon, Jillian Downing, L. Hughes, J. Leatherland, Katrina Fox, Laura Hickman, D. MacGregor. 2017
179 citations recorded by the source corpus.
Abstract It is both epistemologically as well as ethically problematic if the autistic voice is not heard in relation to social scientific research seeking to further develop knowledge of autism. Ever since autism first emerged, it has remained medicalised and almost exclusively the preserve of non-autistic researchers. More recently, autistic individuals have begun to contribute to autism research. However, the vast majority of research in autism is still undertaken on autistic people, rather than with them, and is often not concerned with improving the day-to-day lives of people with autism. We discuss the concepts of participatory research and emancipatory research before presenting a draft framework for what we regard as truly inclusive research in autism. Our proposals are firmly based on ideas developed by the members of a university-based group of autistic adults (the Asperger’s Consultation Group) as well as the knowledge and experience of the other contributors.
Subfields: Cognitive Neuroscience, General Health Professions, Safety Research
View Paper: https://www.semanticscholar.org/paper/ae680f0e92914d9e17af9a94596cd6850f1aa124
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Citations in the corpus
- Making the future together: Shaping autism research through meaningful participation (2018, unknown): “In addressing methodological challenges, and building supportive environments, we encourage researchers and others with relative influence and power (e.g. senior practitioners, policy-makers and funders) to work with autistic-led organisations in the United Kingdom, such as the Participatory Autism ”
- Avoiding Ableist Language: Suggestions for Autism Researchers (2020, background): “Under this framework, autism is disabling in societies that do not make efforts to remove barriers to participation that autistic people face.(59) For example, autism can be disabling when an autistic person seeks employment but is not accommodated for communication differences that impact their abi”