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值得但无权利:联邦政策中的自闭症谱系障碍的社会建构。

Deserving but not entitled: The social construction of autism spectrum disorder in federal policy.

机构信息

RTI International, Center for the Health of Populations, Waltham, MA, USA.

Department of Sociology and Criminology, Villanova University, Villanova, PA, USA.

出版信息

Soc Sci Med. 2022 May;301:114974. doi: 10.1016/j.socscimed.2022.114974. Epub 2022 Apr 15.

Abstract

Public policies play an influential role in shaping public opinion about health conditions, who is affected by them, and potential pathways for identification and intervention. This study draws upon a social constructionist perspective of policy design and disability to examine how autism spectrum disorder (ASD) has been framed in United States federal legislation. Qualitative content analysis of autism legislation passed between 1973 and 2019 indicates that policies reinforced ASD as a largely medicalized, neurobiological condition of childhood; this was reflected in both the policy aims, sources of knowledge and groups prioritized to address ASD; and the symbolic or material resources committed (or not committed) by enacted federal legislation to specific constituencies. Policy aims of early ASD legislation were symbolic in nature, focusing predominantly on framing children with ASD as a group worthy of public recognition. More recent legislation, in contrast, conferred material resources - albeit in targeted ways. Funding for surveillance and medical research on causation, early detection, treatment, and health professional training were prioritized with little attention to either service delivery needs of individuals with ASD and their families, supports over the lifecourse, or the social factors influencing ASD.

摘要

公共政策在塑造公众对健康状况的看法、谁会受到这些看法的影响以及识别和干预的潜在途径方面发挥着重要作用。本研究借鉴政策设计和残疾的社会建构主义观点,考察了自闭症谱系障碍(ASD)在美国联邦立法中是如何被构建的。对 1973 年至 2019 年期间通过的自闭症立法进行的定性内容分析表明,政策强化了 ASD 作为一种主要是医学化的、神经生物学的儿童期疾病的观念;这反映在政策目标、知识来源和优先考虑解决 ASD 的群体中;以及制定的联邦立法为特定群体承诺(或未承诺)的象征性或物质资源。早期 ASD 立法的政策目标本质上是象征性的,主要侧重于将患有 ASD 的儿童构造成一个值得公众认可的群体。相比之下,最近的立法则赋予了物质资源——尽管是以有针对性的方式。优先考虑对病因、早期发现、治疗和卫生专业人员培训进行监测和医学研究的资金,而很少关注 ASD 个体及其家庭的服务提供需求、终身支持或影响 ASD 的社会因素。

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