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. 2024 Sep;28(9):2179-2190.
doi: 10.1177/13623613231222656. Epub 2024 Feb 4.

What are the autism research priorities of autistic adults in Scotland?

Eilidh Cage  1 , Catherine J Crompton  2 , Sarah Dantas  1 , Khiah Strachan  1 , Rachel Birch  3 , Mark Robinson  3 , Stasa Morgan-Appel  3 , Charlie MacKenzie-Nash  3 , Aaron Gallagher  3 , Monique Botha  1
Affiliations

What are the autism research priorities of autistic adults in Scotland?

Eilidh Cage et al. Autism. 2024 Sep.

Abstract

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.

Keywords: adults; policy.

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Conflict of interest statement

Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Figures

Figure 1.
Figure 1.
Map of Scotland showing the areas where participants were from (organised by council area).
See this image and copyright information in PMC

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