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2024.8.8
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自闭症的严重程度及其与残疾的关系
Autism severity and its relationship to disability
【摘要】目前,自闭症严重程度的定义和测量仅基于两个核心症状领域的严重程度:社交沟通以及行为和兴趣的受限或重复模式。然而,自闭症患者经常被诊断出患有其他医学、发育和心理共存疾病。这些额外的挑战,如智力障碍、有限的表达和/或接受性语言以及焦虑障碍,可能对自闭症患者的日常生活、适应性功能和幸福感产生巨大影响。此外,核心症状的最初表现及其随时间变化的可能性受到此类并发病症的影响。为了真正了解一个人的自闭症如何影响他们的生活,应该考虑核心症状和其他挑战。最近,《柳叶刀》委员会就自闭症护理和临床研究的未来采取了这种方法,该委员会提出了“深度自闭症”一词,用于指代具有高度核心症状严重程度、同时存在智力障碍、很少或没有语言的个体亚组,需要广泛的长期护理。考虑其他个人因素,如日常生活技能、具体支持需求和环境资源,也将加强对自闭症患者残疾的评估。正如目前在智力障碍评估中所采用的那样,自闭症的多维方法可以为障碍分类提供更全面的系统。然而,目前还没有正式的方法来指定自闭症这些不同方面对一个人生活的综合影响。承认缺陷、能力、共存条件和环境因素的全面展望将有助于识别个体亚组以及确定临床评估中的个体需求和优势。
【关键词】ADOS校准严重程度评分、自闭症严重程度、自闭症谱系障碍、自闭症症状、深度自闭症、症状严重程度变化
[Abstract] Autism severity is currently defined and measured based exclusively on the severity levels of the two core symptom domains: social-communication and restricted or repetitive patterns of behaviors and interests. Autistic individuals, however, are often diagnosed with other medical, developmental, and psychological co-occurring conditions. These additional challenges such as intellectual disability, limited expressive and/or receptive language, and anxiety disorders, can have a tremendous impact on the day-to-day lives of autistic individuals, for both their adaptive functioning as well as their sense of wellbeing. Furthermore, the initial presentation of core symptoms and their likelihood of changing over time are influenced by the presence of such co-occurring conditions. In order to truly understand how a person's autism impacts their life, both core symptoms as well as other challenges should be considered. This approach was recently taken byThe Lancet Commission on the future of care and clinical research in autism, which proposed the term “profound autism” for a subgroup of individuals presenting with high core symptom severity, co-occurring intellectual disability, and little or no language, who require extensive long-term care. Considering other individual factors such as daily living skills, specific support needs and environmental resources would also enhance the evaluation of disability in autistic individuals. As currently employed in the assessment of intellectual disability, a multidimensional approach to autism could provide a more comprehensive system for classification of impairment. At present, however, there is no formal way to designate the combined effect of these different aspects of autism on a person's life. A comprehensive outlook that acknowledges impairments, capabilities, co-occurring conditions, and environmental factors would be useful for identifying subgroups of individuals as well as for determining individual needs and strengths in clinical assessments.
[Key words] ADOS calibrated severity score, autism severity, autism spectrum disorder, autism symptoms, profound autism, symptom severity change
论文原文:Einat Waizbard-Bartov, Deborah Fein, Catherine Lord, David G. Amaral (2023). Autism severity and its relationship to disability. Autism Research. 16 (4): 685-696.
https://doi.org/10.1002/aur.2898
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