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我悬在半空,紧紧抓住不放。这令人疲惫不堪:一位自闭症患者对他们在普通学校系统中经历的旅程的看法。

I was hanging in the air and holding on tight. It's exhausting: An autistic perspective on their journey through the general school system.

作者信息

Zakai-Mashiach Mati

机构信息

The MOFET Institute, Israel.

Department of Special Education, Beit-Berl Academic College, Kfar-Saba, Israel.

出版信息

Autism. 2025 Jun;29(6):1483-1496. doi: 10.1177/13623613241310295. Epub 2025 Jan 4.

DOI:10.1177/13623613241310295
PMID:39754512
Abstract

Enrollment of autistic children in general schools has increased significantly in the past decade. However, having access to school does not mean being included in school. Autistic individuals' perspectives regarding their general school experience are limited, with most research focusing on the middle-school stage. This study examines the retrospective experiences of 10 autistic individuals, aged 19-25 years, who attended general schools from elementary through high school. Using semi-structured interviews and the pictorial 'Blob Tree' technique as a visual method to elicit self-narratives, the research revealed recurring themes associated with each educational level. Elementary school was marked by feelings of difference and ambiguity. Middle school was characterised by the impact of the autism diagnosis and emotions of instability. It was found, however, that high school represented a turning point, marked by increased self-assurance, acceptance of their autism and a sense of fulfilment. These findings underscore the importance of offering autistic individuals opportunities to share their narratives and to provide insights into their longitudinal experience in general schools. This emphasises the developmental journey of these students, highlighting the challenges they face at each stage and the growing need for increased inclusivity in general schools to better support autistic students.Lay abstractIn the past decade, autistic children have increasingly enrolled in general schools worldwide. However, most insights into their educational experiences come from educators and parents. There is a gap in understanding autistic children's perspectives on their educational experiences. The limited evidence from autistic children primarily focuses on middle school and reveals complex feelings of loneliness, anxiety and being misunderstood by teachers and peers. Moreover, research to date has not examined the full-time period of general education, which is needed to understand the cumulative developmental trajectory from elementary through high school. To address these gaps, this study investigated the lived experiences of 10 autistic individuals (ages 19-25 years) who had completed their entire school journey in general education settings. This study utilised in-depth interviews and a visual technique called the 'Blob Tree' to elicit their stories. The findings indicated that during primary school, participants felt overwhelmed and confused by the school environment. The transition to middle school, where they received an autism diagnosis, marked a period of significant instability, social insecurity and loneliness. Interestingly, the participants gained confidence during high school, accepted their autism and developed a more positive self-image. These findings emphasise the importance of learning the longitudinal self-perspective of autistic individuals through creative methods like the 'Blob Tree' technique. Furthermore, the study highlights the crucial role of effective support services during school transitions, particularly from experts in inclusive education. It underscores the need to create environments within general schools that are more inclusive to support autistic students better.

摘要

在过去十年中,自闭症儿童进入普通学校就读的人数显著增加。然而,能够上学并不意味着就能融入学校。自闭症患者对其普通学校经历的看法有限,大多数研究集中在中学阶段。本研究调查了10名年龄在19至25岁之间、从小学到高中都在普通学校就读的自闭症患者的回顾性经历。通过半结构化访谈以及使用图像“斑点树”技术作为一种引出自我叙述的视觉方法,该研究揭示了与每个教育阶段相关的反复出现的主题。小学阶段的特点是有差异感和模糊感。中学阶段的特点是自闭症诊断的影响以及不稳定的情绪。然而,研究发现高中是一个转折点,其特点是自信心增强、接受自身的自闭症以及有成就感。这些发现强调了为自闭症患者提供分享其经历的机会以及深入了解他们在普通学校的长期经历的重要性。这突出了这些学生的发展历程,强调了他们在每个阶段所面临的挑战以及普通学校对提高包容性以更好地支持自闭症学生的日益增长的需求。

摘要

在过去十年中,自闭症儿童越来越多地进入世界各地的普通学校就读。然而,对他们教育经历的大多数见解来自教育工作者和家长。在理解自闭症儿童对其教育经历的看法方面存在差距。来自自闭症儿童的有限证据主要集中在中学阶段,并揭示了孤独、焦虑以及被教师和同龄人误解的复杂感受。此外,迄今为止的研究尚未考察整个普通教育阶段,而这对于理解从小学到高中的累积发展轨迹是必要的。为了填补这些空白,本研究调查了10名在普通教育环境中完成整个学业历程的自闭症患者(年龄在19至25岁之间)的生活经历。本研究采用深入访谈和一种名为“斑点树”的视觉技术来引出他们的故事。研究结果表明,在小学阶段,参与者对学校环境感到不知所措和困惑。向中学过渡,即他们被诊断为自闭症的阶段,标志着一段显著的不稳定、社会不安全感和孤独时期。有趣的是,参与者在高中阶段获得了信心,接受了自己的自闭症,并形成了更积极的自我形象。这些发现强调了通过像“斑点树”技术这样的创造性方法了解自闭症患者长期自我视角的重要性。此外,该研究强调了在学校过渡期间,特别是来自全纳教育专家的有效支持服务的关键作用。它强调了在普通学校内创造更具包容性的环境以更好地支持自闭症学生的必要性。

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