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重新构想对美国自闭症原住民儿童的支持:解决识别不足和服务差距问题。

Reimagining Support for Autistic Indigenous Children in the United States: Addressing Under-Identification and Service Gaps.

作者信息

Kristofik Allyson, Demps Katandria Love

机构信息

Independent Researcher, Cedar Hill, TX, USA.

Dr. Love's Healthcare®, Integrative Nutrition and Lifestyle Medicine, Cedar Hill, TX, USA.

出版信息

Neuropsychiatr Dis Treat. 2024 Aug 2;20:1503-1511. doi: 10.2147/NDT.S466098. eCollection 2024.

Abstract

Although the original purpose of this article was to provide a comprehensive review of services provided for autistic children among Indigenous communities in Texas, USA, the authors' encounter with a significant paucity in availability of data and relevant reports on Indigenous services for ASD spurred the choice of a perspective article instead as it allows a more critical view into the pitfalls surrounding the state of autism services. The meager documentation availability presents a dilemma for both researchers and Indigenous communities since it often leads to misrepresentations of data, and limits understanding of existing support systems. This perspective article addresses these issues and serves to highlight the complexity of collecting data among Indigenous populations across the United States. Specifically, it emphasizes the challenges faced in Texas, shedding light on the various barriers such as variations in cultural identity, government trust, cultural awareness, and disability identity that impede data-collection efforts in providing effective services to Indigenous populations. We advocate for a radical transformation in understanding how to approach and report the prevalence of possible ASD autism among Indigenous children to provide effective and tailored services. Ultimately, this transformation aims to secure the necessary data to provide services that effectively complement the existing support systems within individual Indigenous communities to enable their fullest and most equitable participation in society. The discussion calls for a comprehensive roadmap to achieve the goal of increasing Indigenous data collection and availability while the conclusion outlines a suggested roadmap to achieve the goals of increasing data generation and available services to Indigenous communities, and ultimately, improving services for Indigenous children with ASD in Texas and their families.

摘要

尽管本文的初衷是全面回顾美国得克萨斯州原住民社区为自闭症儿童提供的服务,但作者发现有关原住民自闭症谱系障碍(ASD)服务的数据和相关报告严重匮乏,这促使他们选择撰写一篇观点文章,因为这样可以更批判性地审视自闭症服务现状所面临的问题。可用文档的匮乏给研究人员和原住民社区都带来了困境,因为这常常导致数据被错误表述,并限制了对现有支持系统的理解。这篇观点文章探讨了这些问题,并旨在突出在美国原住民中收集数据的复杂性。具体而言,它强调了得克萨斯州所面临的挑战,揭示了诸如文化身份差异、对政府的信任、文化意识以及残疾身份认同等各种障碍,这些障碍阻碍了为原住民提供有效服务时的数据收集工作。我们主张在理解如何处理和报告原住民儿童中可能存在的自闭症谱系障碍(ASD)患病率方面进行彻底转变,以便提供有效且量身定制的服务。最终, 这种转变旨在获取必要的数据,以提供能有效补充各个原住民社区现有支持系统的服务,使他们能够最充分、最公平地参与社会。讨论呼吁制定一个全面的路线图,以实现增加原住民数据收集和可用性的目标,而结论部分则概述了一个建议的路线图,以实现增加向原住民社区生成数据和提供可用服务的目标,并最终改善得克萨斯州患有自闭症谱系障碍(ASD)的原住民儿童及其家庭的服务。

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