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Making Sense of Autism: Parents' Experiences in the People's Republic of China.

机译:理解自闭症:中国父母的经历。

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摘要

In this qualitative study, I explore the experiences of parents of children with autism in China. I investigate how the parents negotiate their day-to-day life of raising a child with autism in contemporary urban Chinese society. I also examine the socially constructed nature of autism within this specific social and cultural context and how the constructed meaning of autism is reflected in the way that parents perceive, treat, and educate their children with the autism label.;Participants were volunteers recruited from a group of parents of children with autism who attended an educational program offered by Sunshine Autism Institute (SAI), which is located in a small village on the eastern outskirts of a metropolitan city of China. In-depth interviews and participant observations were used to collect rich, detailed, descriptive data in naturalistic settings.;The findings suggest that in a society where the medical-model discourse of disability is the conventional and dominant form of thinking, autism is perceived as a disease that needs to be "cured." Moreover, children with the autism label generally do not have the opportunity to attend public schools and are usually rejected by mainstream society. However, some parents came to see their children with autism beyond the confinement of medical description. They recognized their children as having their own characteristics, strengths, interests, and needs. They valued their children's individuality, affirmed their competence. In these families, autistic ways of being were respected and embraced. Findings also show how when acknowledged as complete and full persons, children with the autism label can be: included as full participants in family life; enabled by being presumed competent; and, mainstreamed into classrooms with other children when appropriate accommodations are provided.
机译:在这项定性研究中,我探索了中国自闭症儿童父母的经历。我研究了父母如何在当代中国城市社会中协商如何抚养患有自闭症的孩子的日常生活。我还研究了在这种特定的社会和文化背景下自闭症的社会建构性质,以及自闭症的建构意义如何以父母对自闭症标签的感知,对待和教育子女的方式反映出来;参与者是从一群自闭症儿童的父母,他们参加了阳光自闭症研究所(SAI)提供的教育计划,该研究所位于中国大都市东部郊区的一个小村庄。深入的访谈和参与者的观察被用来在自然主义的环境中收集丰富,详细,描述性的数据。研究结果表明,在一个医学模型的残疾话语是传统且占主导地位的思维方式的社会中,自闭症被认为是需要“治愈”的疾病。此外,带有自闭症标签的儿童通常没有机会上公立学校,并且通常被主流社会拒绝。然而,有些父母来见他们的孩子患有自闭症,这超出了医学描述的范围。他们认识到自己的孩子具有自己的特点,优势,兴趣和需求。他们重视孩子的个性,肯定了他们的能力。在这些家庭中,自闭症患者的生活方式得到尊重和拥抱。研究结果还表明,当被公认为是完整和完整的人时,带有自闭症标签的孩子可以如何:作为家庭生活的完整参与者;被推定为有能力的;并在提供适当住宿的情况下与其他孩子一起纳入课堂主流。

著录项

  • 作者

    Chi, Zhaoyang.;

  • 作者单位

    Syracuse University.;

  • 授予单位 Syracuse University.;
  • 学科 Education Sociology of.;Sociology Individual and Family Studies.;Education Special.
  • 学位 Ph.D.
  • 年度 2014
  • 页码 380 p.
  • 总页数 380
  • 原文格式 PDF
  • 正文语种 eng
  • 中图分类
  • 关键词

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