自闭症之声:分享自闭症儿童的经历和见解

Sinéad Louise Mullally, Alice E Wood, Cherice Chantelle Edwards, Sophie E Connolly, Hannah Constable, Stuart Watson, Jacqui Rodgers, Kieran Rose, Nic King
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引用次数: 0

摘要

自闭症研究很少放大自闭症儿童的声音。在此,我们旨在通过整理和分享自闭症儿童的第一手经验和见解来解决这一问题。共有 136 名儿童(8-14 岁)通过半结构化在线问卷/视频通话的方式自我报告了他们的自闭症经历。我们收集了定性和定量数据,并使用归纳式主题分析法对定性回答进行分析。确定了四个核心主题:安全和保障"、"顺应、融入和掩饰"、"身份 "和 "感官敏感"。最初的主题 "安全和保障 "贯穿于儿童的叙述中,绝大多数儿童都谈到,他们需要警惕 生活中哪些人是安全的,哪些人是不安全的。他们还高度关注特定场所对他们来说是否安全,因为过去的经历似乎告诉他们,不能假定他们在日常场所的安全。教师、医疗和社会护理专业人员以及神经正常的同龄人经常被指为不安全的人,学校是不安全的地方,而父母、家庭和自闭症同龄人则经常被指为安全的地方。这种区别在定量数据的统计分析中也很明显,自闭症儿童更倾向于表示,相对于在学校或与朋友/同伴在一起时,他们在家里是可以做自闭症患者的。判断一个人是否安全,与这个人对儿童及其自闭症经历的理解密切相关,而理解对于建立信任非常重要。一旦建立了信任,即使在不安全的地方,受信任的人似乎也能为儿童带来安全感。在自闭症/神经发育异常群体中的归属感与安全和保障的核心主题以及积极的自闭症身份认同有着积极的联系,而掩饰和感官困扰则与不安全和无保障感有关。这些第一手资料为我们了解自闭症儿童的生活提供了宝贵的视角,并要求我们立即探索如何将家庭以外的场所(包括教育场所)转变为自闭症儿童的安全空间。
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Autistic voice: Sharing autistic children's experiences and insights
Autism research rarely amplifies the voices of autistic children. Here, we aim to counter this by collating and sharing the first-hand experiences and insights of autistic children. A total of 136 children (8-14 years of age) self-reported their experiences of being autistic via a semi-structured online questionnaire/video call. Both qualitative and quantitative data was gathered, and inductive thematic analysis used to analyse qualitative responses. Four core themes were identified: 'Safety and Security', 'Conformity, Fitting in and Masking', 'Identity', and 'Sensory Sensitivity'. The initial theme of safety and security permeated the children's narratives and overwhelmingly, the children spoke of the need for them to be alert to who in their lives is a safe person and who is not. They were also highly attuned to whether specific places are safe for them, as past experiences appear to have taught them that their safety in everyday places cannot be assumed. Teachers, health and social care professionals, and neurotypical peers were frequently singled out as unsafe people and school as an unsafe place, whilst parents, home, and autistic peers were often referred to as safe. This distinction was also evident in the statistical analysis of the quantitative data, whereby autistic children were significantly more likely to report that it is okay for them to be autistic at home, relative to when they are at school or with their friends/peers. Judging a person as safe was closely linked to that persons' understanding of the child and of their autistic experiences, and understanding was important in establishing trust. When trust was established, it appeared possible for trusted people to facilitate a sense of safety for the children even within otherwise unsafe places. A sense of belonging within autistic/neurodivergent communities was positively linked to the core theme of safety and security and to having a positive autistic identity, whilst masking and sensory distress were linked to feeling unsafe and insecure. These first-hand accounts provide valuable insights into autistic children's lives and demand that we urgently explore how places outside of the family home (including places of education) can be transformed into safe spaces for autistic children.
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