苏格兰成人自闭症患者的自闭症研究重点是什么?

IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL
Autism Pub Date : 2024-09-01 Epub Date: 2024-02-04 DOI:10.1177/13623613231222656
Eilidh Cage, Catherine J Crompton, Sarah Dantas, Khiah Strachan, Rachel Birch, Mark Robinson, Stasa Morgan-Appel, Charlie MacKenzie-Nash, Aaron Gallagher, Monique Botha
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引用次数: 0

摘要

内容提要:尽管研究工作有可能改善自闭症患者的生活,但很多资金都用于研究自闭症患者认为对其日常生活影响甚微的课题。自闭症患者的生活会因居住地的不同而有所不同,而苏格兰在很多方面都是一个独特的国家。我们希望了解苏格兰的自闭症患者希望研究哪些课题。我们由自闭症和非自闭症研究人员(包括大学研究人员和社区研究人员)组成的团队制作了一份调查表,让 225 名成年自闭症患者对可能的研究课题的重要性进行评分和排序,并分享他们对哪些课题重要的看法。五个最重要的主题是心理健康和幸福、自闭症患者的识别和诊断、支持服务(包括医疗保健和社会关怀)、非自闭症患者的知识和态度以及影响自闭症女性的问题。最不重要的三个主题是自闭症的遗传学或生物学方面、自闭症的治疗/干预以及自闭症的病因。我们的调查结果表明,苏格兰的自闭症患者希望研究能够关注与他们日常生活息息相关的问题。此外,苏格兰政府表示,他们将在最新的政策计划中听取自闭症患者的意见,我们认为,考虑自闭症患者的研究重点是其中重要的一部分。我们的研究结果还进一步呼吁自闭症研究人员改变研究方式和研究内容。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
What are the autism research priorities of autistic adults in Scotland?

Lay 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.

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来源期刊
Autism
Autism PSYCHOLOGY, DEVELOPMENTAL-
CiteScore
9.80
自引率
11.50%
发文量
160
期刊介绍: Autism is a major, peer-reviewed, international journal, published 8 times a year, publishing research of direct and practical relevance to help improve the quality of life for individuals with autism or autism-related disorders. It is interdisciplinary in nature, focusing on research in many areas, including: intervention; diagnosis; training; education; translational issues related to neuroscience, medical and genetic issues of practical import; psychological processes; evaluation of particular therapies; quality of life; family needs; and epidemiological research. Autism provides a major international forum for peer-reviewed research of direct and practical relevance to improving the quality of life for individuals with autism or autism-related disorders. The journal''s success and popularity reflect the recent worldwide growth in the research and understanding of autistic spectrum disorders, and the consequent impact on the provision of treatment and care. Autism is interdisciplinary in nature, focusing on evaluative research in all areas, including: intervention, diagnosis, training, education, neuroscience, psychological processes, evaluation of particular therapies, quality of life issues, family issues and family services, medical and genetic issues, epidemiological research.
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