“独立生活对我来说意味着一切”:澳大利亚自闭症成年人的声音

IF 9.5 Q1 PSYCHOLOGY, DEVELOPMENTAL
Autism in Adulthood Pub Date : 2024-09-16 eCollection Date: 2024-09-01 DOI:10.1089/aut.2022.0102
Mustafa Al Ansari, Chris Edwards, Vicki Gibbs
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引用次数: 0

摘要

背景:尽管许多患有自闭症的成年人都渴望独立生活,但最近的研究表明,只有大约六分之一的自闭症成年人能够独立生活。这包括独自生活、与伴侣或朋友一起生活。这一比例低于其他残疾成年人。其他国家的现有研究探讨了独立生活的潜在障碍,但很少有研究探讨自闭症成年人的实际经历。据我们所知,全球范围内还没有关于自闭症成人搬离家庭的第一手经验的公开研究,也没有关于澳大利亚自闭症成人独立生活经验的公开研究:我们邀请了在澳大利亚有独立生活经验的成年自闭症患者参加访谈,以了解他们的搬离和独立生活经历。访谈以虚拟方式进行,并进行录音和转录。转录内容在 NVivo 中进行编码并进行主题分析:共采访了 11 名自闭症成年人(21-50 岁)。从访谈中得出了三个关键主题。成年自闭症患者认为,独立生活对于拥有自己的空间、增加自主权和控制权非常重要(主题 1)。然而,成年自闭症患者也认为,搬出家门和独立生活会带来许多挑战,而且目前的支持也很有限(主题 2)。11 名参与者中有 9 名是在成年时被诊断出患有自闭症的,他们分享了诊断的重要性,以及早期诊断可能会如何影响他们对住宿和生活安排的选择(主题 3):本研究的结果重申了独立生活对成年自闭症患者的重要性,并揭示了过渡到独立生活所面临的挑战。研究进一步补充了有关早期诊断对日后生活选择的重要性的文献。更好的成人诊断途径以及为搬离过程提供支持,将有助于自闭症成人向独立生活过渡。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
"Living Independently Means Everything to Me": The Voice of Australian Autistic Adults.

Background: Despite the desire of many autistic adults to live independently, recent studies suggest that only about one in six autistic adults do. This includes living alone, with a partner, or with friends. This is a rate that is lower than adults with other disabilities. Existing studies from other countries have explored the potential barriers to independent living, with very few exploring the actual experiences of autistic adults. To the best of our knowledge, there have been no published studies exploring the firsthand moving out experiences of autistic adults globally and none that have explored their independent living experiences in Australia.

Methods: Autistic adults with independent living experience in Australia were invited to partake in an interview to understand their moving out and independent living experiences. Interviews were held virtually, audio recorded, and transcribed. Transcriptions were coded in NVivo and thematically analyzed.

Results: A total of 11 autistic adults were interviewed (aged 21-50 years). Three key themes were derived from the interviews. Autistic adults perceived independent living as important to have their own space with added autonomy and control (Theme 1). However, autistic adults shared that the moving out process and independent living comes with many challenges, and currently supports are limited (Theme 2). Nine of the 11 participants were diagnosed as adults, and they shared the importance of diagnosis and how an earlier diagnosis may have influenced their choice of accommodation and living arrangements (Theme 3).

Conclusions: Findings from this study reiterate the importance of independent living to autistic adults and shed light on the challenges of transitioning to independent living. It further adds to the growing literature about the importance of early diagnosis on later life choices. Better pathways toward adult diagnosis and the provision of supports for the moving out process would be useful to ease transition to independent living for autistic adults.

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