Social Support, Well-being, and Quality of Life Among Individuals on the Autism Spectrum
Social Support, Well-being, and Quality of Life Among Individuals on the Autism Spectrum
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DOI：
10.1542/peds.2016-4300n
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发表时间：
2018-04-01
期刊：
影响因子：
8
通讯作者：
Kapp, Steven K.
中科院分区：
文献类型：
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作者：
Kapp, Steven K.
不同的理论观点（1-3）和实证研究结果（4,5）揭示了发育是先天与后天之间复杂的相互作用，但自闭症谱系障碍的诊断主要根据个体层面的社会功能障碍对神经发育障碍进行分类。自我倡导者组织了神经多样性运动，将自闭症重新视为身份的一部分（例如，使用身份优先的语言，如“自闭症患者”，如作者的情况，而不是个人优先的语言，如“自闭症患者”(6,7)）并支持公民权利。我们认为，社会环境对残疾和追求生活质量有很大影响，生活质量的定义是适应功能的“客观”因素，例如独立生活和就业，以及主观幸福感，这需要自决在做出决定以获得一个人想要的经历时发挥尽可能积极的作用。然而，我们反对正常化和“治愈”，部分原因是许多自闭症特征可以以中立或积极的方式发挥作用，尽管其他人可能会误解或污蔑非典型行为。.(8-10) 事实上，以下叙述性回顾是根据独立研究小组重复的经验证据进行的，反对自闭症症状和功能受损之间的线性关系，跨越发展时期，在“客观”生活质量和主观幸福感的多个领域。在下面的综合中，我认为有效的社会支持和主观幸福感可以调节自闭症患者是否获得高质量的生活。
Diverse theoretical perspectives.(1-3) and empirical findings.(4,5) reveal development as a complex interaction between nature and nurture, yet the diagnosis of autism spectrum disorder is used to classify neurodevelopmental disability mainly on the basis of individual-level social dysfunction. Self-advocates have organized the neurodiversity movement to reclaim autism as a part of identity (eg, using identity-first language such as "autistic person, " as in the case of the author, rather than person-first language such as " person with autism"(6,7)) and support civil rights. We argue that social environments contribute substantially to disability and seek quality of life, defined in terms of "objective" factors of adaptive functioning, such as independent living and employment, as well as in terms of subjective well-being, which requires self-determination to play as active a role as possible in making decisions to have the experiences one wants. Yet we argue against normalization and "cure," in part because many autistic traits can function in neutral or positive ways, although other people may misunderstand or stigmatize atypical behaviors..(8-10) Indeed, the following narrative review developed from empirical evidence replicated by independent research teams argues against a linear relationship between autism symptoms and impaired functioning, across developmental periods and in multiple domains of both "objective" quality of life and in subjective well-being. In the following syntheses, I suggest that effective social support and subjective well-being mediate whether autistic people achieve a high quality of life.