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“没有我们的参与,就没有关于我们的事”:澳大利亚自闭症女孩、女性及性别多元人群的研究重点

'Nothing About Us, Without Us': Research Priorities for Autistic Girls, Women and Gender Diverse People in Australia.

作者信息

Grove Rachel, Clapham Hayley, Moodie Tess, Gurrin Sarah, Hall Gabrielle

机构信息

School of Public Health, Faculty of Health, University of Technology Sydney, Ultimo, Australia.

出版信息

J Autism Dev Disord. 2024 May 6. doi: 10.1007/s10803-024-06330-5.

Abstract

Autistic girls, women and gender diverse people have specific needs that are underrepresented in research. Research priorities are often established by funding bodies, researchers, parents, carers and health professionals and may not meet the needs of the diverse Autistic community. This co-produced project aimed to identify what research would benefit the lives of Autistic girls, women and gender diverse people in Australia. We interviewed 47 Autistic girls, women and gender diverse people aged seven and above and obtained feedback from an additional 411 Autistic people through an online survey. Autistic young people identified six key research priorities including (1) better understanding and support at school, (2) understanding our experiences, strengths and challenges, (3) autism specific mental health support, (4) Autistic friendships and relationships, (5) experiences of gender diversity and (6) accommodations to make life easier for us. Eight key research priority areas were identified by Autistic adults including (1) understanding and supporting specific needs in adulthood, (2) experiences of trauma, abuse and sexual violence, (3) supporting mental health and wellbeing, (4) addressing barriers in healthcare, (5) understanding and supporting physical health needs, (6) addressing barriers in education and the workplace, (7) understanding the role of society, embracing neurodiversity and the importance of Autistic identity and (8) co-designing research and supports with Autistic people. We provide a discussion around the importance of focusing on these research priority areas in future autism research in Australia.

摘要

患有自闭症的女孩、女性及性别多样化人群有一些特定需求,但这些需求在研究中未得到充分体现。研究重点往往由资助机构、研究人员、家长、护理人员和健康专业人士确定,可能无法满足多样化的自闭症群体的需求。这个共同开展的项目旨在确定哪些研究将有益于澳大利亚患有自闭症的女孩、女性及性别多样化人群的生活。我们采访了47名年龄在7岁及以上的患有自闭症的女孩、女性及性别多样化人群,并通过在线调查从另外411名自闭症患者那里获得了反馈。自闭症青少年确定了六个关键研究重点,包括:(1)在学校获得更好的理解和支持;(2)了解我们的经历、优势和挑战;(3)针对自闭症的心理健康支持;(4)自闭症患者的友谊和人际关系;(5)性别多样性经历;(6)使我们的生活更轻松的便利设施。自闭症成年人确定了八个关键研究重点领域,包括:(1)了解和支持成年后的特定需求;(2)创伤、虐待和性暴力经历;(3)支持心理健康和幸福;(4)解决医疗保健中的障碍;(5)了解和支持身体健康需求;(6)解决教育和工作场所中的障碍;(7)理解社会的作用、接纳神经多样性以及自闭症身份的重要性;(8)与自闭症患者共同设计研究和支持措施。我们围绕在澳大利亚未来的自闭症研究中关注这些研究重点领域的重要性进行了讨论。

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