Added on 23/06/2024
Journal article of the type Scientific research ( ; english)
*Three co-authors had publicly identified as autistic. [Learn more about this mention]
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Although research has the potential to improve autistic people's lives, lots of funding goes towards research looking at topics which autistic people say has little impact in their everyday lives. Autistic people's lives can be different depending on where they live, and Scotland is a unique country in many ways. We wanted to find out which topics autistic people in Scotland want to see research on. Our team of autistic and non-autistic researchers (including university-based and community researchers) created a survey where 225 autistic adults rated and ranked the importance of possible research topics and shared their thoughts on what topics mattered to them. The five most important topics were mental health and well-being, identifying and diagnosing autistic people, support services (including healthcare and social care), non-autistic people's knowledge and attitudes and issues impacting autistic women. The three least important topics were genetics or biological aspects of autism, autism treatments/interventions and causes of autism. Our findings indicate that autistic people in Scotland want research to focus on things that matter to their day-to-day lives. Also, the Scottish government says they will be listening to autistic people in their latest policy plans, and we believe that considering autistic people's research priorities is an important part of this. Our findings also add to growing calls for change to happen in how and what autism researchers do research on.
For your information:
(1) References in blue are resources listed on our site.
(2) Authors listed in this bibliography whose names are in color have published other resources referenced on the site. Clicking on the name allows you to see the list of resources they have published and shared on the site.
(3) Authors whose names are followed by an asterisk have publicly disclosed being autistic.
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G. Warner, H. Cooper, J. Cusack* (2019). "A review of the autism research funding landscape in the United Kingdom". Autistica. (Source)
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E. Weir, C. Allison, S. Baron-Cohen (2022). "Autistic adults have poorer quality healthcare and worse health based on self-report data". Molecular Autism, 13(1). doi:10.1186/s13229-022-00501-w
This resource is cited in 1 resource referenced on the site:
- Sue Fletcher-Watson (2024, en), "Reporting participatory methods and author positionality in autism".
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