"我不只是很困难. . . . . . . . . . . . . . . . . . . . . . . . . . . . . 这就是为什么我们会这样做.
Sarah Radev1, Megan Freeth2, Andrew R Thompson1
1Cardiff University, UK.
Autism : the international journal of research and practice
|November 24, 2023
概括
自闭症父母在为自闭症孩子寻求支持时面临系统性挑战,经常需要大力倡导服务. 他们还经历了与判断和感官问题的独特斗争,突出了对支持系统的自闭症信息培训的需要.
科学领域:
- 自闭症谱系障碍 (ASD) 研究研究
- 育儿研究 育儿研究
- 提供残疾人支持服务.
背景情况:
- 育儿对许多人来说是一个重要的生命阶段,包括自闭症患者.
- 现有的研究不足以涵盖自闭症父母为自闭症孩子寻求支持的经历.
- 这项研究以自闭症家长研究人员的观点为中心,并涉及经验的专家.
研究的目的:
- 探索自闭症母亲与自闭症儿童寻求支持的经历.
- 确定自闭症家庭获得医疗保健和教育服务的挑战和促进者.
- 为改善自闭症父母及其子女的支持系统提供信息.
主要方法:
- 涉及半结构面试的定性研究.
- 十名自闭症母亲与自闭症儿童参加了主流教育.
- 数据分析侧重于共同的经验和系统性问题.
主要成果:
- 自闭症家长认为系统性障碍,而不是个人失败,是获得支持的主要障碍.
- 参与者报告说,他们需要坚持地为孩子们的需求辩护.
- 报告的独特挑战包括社会判断,耻辱,以及管理感官和沟通差异的困难.
结论:
- 系统性改进和加强培训对于更好地支持自闭症家庭至关重要.
- 培训应该由自闭症成年人共同开发和提供,强调自闭症的优势.
- 解决自闭症父母的特定感官和沟通需求对于有效的支持至关重要.
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