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“在我的经历中,我并不感到孤单”:新确诊的成年自闭症患者如何与一份肯定神经多样性的“迎新包”互动。

"I'm not feeling alone in my experiences": How newly diagnosed autistic adults engage with a neurodiversity-affirming "Welcome Pack".

作者信息

Edwards Chris, Love Abigail Ma, Cai Ru Ying, Heyworth Melanie, Johnston Alexandra, Aldridge Fiona, Gibbs Vicki

机构信息

Autism Spectrum Australia (Aspect), Australia.

Griffith University, Australia.

出版信息

Autism. 2025 Apr 25:13623613251335070. doi: 10.1177/13623613251335070.

Abstract

Receiving an autism diagnosis in adulthood can be profoundly transformative, yet many newly diagnosed autistic adults experience a lack of accessible, affirming post-diagnostic support. This study explores how a self-guided, neurodiversity-affirming resource-the "Welcome Pack"-supports newly diagnosed autistic adults in navigating their evolving identity. Using a qualitative approach, we recruited 11 autistic adults without intellectual disability in Australia who had received a diagnosis within the past 6 months. Participants engaged with the "Welcome Pack" over a 2-month period before taking part in semi-structured interviews. Reflexive thematic analysis generated four key themes: (1) a sense of belonging through community and representation, as participants found validation in shared narratives; (2) the "Welcome Pack" as one of many tools supporting their self-understanding; (3) emotional reflections, including both relief and grief over years of masking; and (4) challenges in self-advocacy and educating others. While participants described the "Welcome Pack" as an important and validating resource, they also highlighted the need for additional structured peer support and practical guidance. These findings underscore the value of integrating self-guided resources within broader post-diagnostic ecosystems, ensuring that newly diagnosed autistic adults receive timely, accessible, and neurodiversity-affirming support as they navigate their identity.Lay Abstract.

摘要

成年后被诊断为自闭症可能会带来深刻的转变,然而许多新被诊断为自闭症的成年人缺乏可获取的、给予肯定的诊断后支持。本研究探讨了一种自我引导的、肯定神经多样性的资源——“欢迎包”——如何帮助新被诊断为自闭症的成年人应对其不断演变的身份认同。采用定性研究方法,我们招募了11名在澳大利亚的无智力障碍的自闭症成年人,他们在过去6个月内被诊断为自闭症。参与者在参加半结构化访谈之前的2个月内使用了“欢迎包”。反思性主题分析产生了四个关键主题:(1)通过社区和代表性获得归属感,因为参与者在共同的叙述中找到了认可;(2)“欢迎包”是支持他们自我理解的众多工具之一;(3)情感反思,包括对多年来伪装的解脱和悲伤;(4)自我倡导和教育他人方面的挑战。虽然参与者将“欢迎包”描述为一种重要且能给予肯定的资源,但他们也强调了额外的结构化同伴支持和实际指导的必要性。这些发现强调了在更广泛的诊断后生态系统中整合自我引导资源的价值,确保新被诊断为自闭症的成年人在应对其身份认同时能获得及时、可获取且肯定神经多样性的支持。摘要。

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