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“独立生活对我来说意味着一切”:澳大利亚成年自闭症患者的心声。

"Living Independently Means Everything to Me": The Voice of Australian Autistic Adults.

作者信息

Al Ansari Mustafa, Edwards Chris, Gibbs Vicki

机构信息

Autism Spectrum Australia, Aspect Research Centre for Autism Practice (ARCAP), Chatswood, New South Wales, Australia.

FMH Translational Research Collective, Faculty of Medicine and Health, University of Sydney, Sydney, New South Wales, Australia.

出版信息

Autism Adulthood. 2024 Sep 16;6(3):312-320. doi: 10.1089/aut.2022.0102. eCollection 2024 Sep.

Abstract

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.

摘要

背景

尽管许多成年自闭症患者渴望独立生活,但最近的研究表明,只有约六分之一的成年自闭症患者能够实现。这包括独自生活、与伴侣一起生活或与朋友一起生活。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,很少有研究探讨成年自闭症患者的实际经历。据我们所知,全球范围内尚未有发表的研究探讨成年自闭症患者首次搬离家庭的经历,也没有研究探讨他们在澳大利亚的独立生活经历。

方法

邀请在澳大利亚有独立生活经历的成年自闭症患者参加访谈,以了解他们搬离家庭和独立生活的经历。访谈通过视频进行,录音并转录。转录内容在NVivo中进行编码并进行主题分析。

结果

共访谈了11名成年自闭症患者(年龄在21至50岁之间)。访谈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、增加自主性和控制权很重要(主题1)。然而,成年自闭症患者表示,搬离家庭的过程和独立生活面临许多挑战,目前的支持有限(主题2)。11名参与者中有9名是成年后被诊断出患有自闭症,他们分享了诊断的重要性以及早期诊断可能如何影响他们的住宿选择和生活安排(主题3)。

结论

本研究结果重申了独立生活对成年自闭症患者的重要性,并揭示了向独立生活过渡的挑战。它进一步丰富了关于早期诊断对后期生活选择重要性的文献。更好的成人诊断途径以及为搬离家庭过程提供支持,将有助于缓解成年自闭症患者向独立生活的过渡。

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