柳叶刀 委员会关于自闭症护理和临床研究的未来

The Lancet Commission on the future of care and clinical research in autism

——原载《柳叶刀委员会》2022年第399 卷第10321期——

<The Lancet Commission>, 2022, 399 (10321)

【编者按】（4月2日是“世界提高对自闭症认识日”。联合国秘书长古特雷斯在为此所发表的致辞中呼吁人们“再次承诺，为自闭症患者构建一个包容、公平、可持续的世界。本刊特翻译了国际著名期刊《柳叶刀》2022年1月15日发表的“柳叶刀委员会关于自闭症护理和临床研究的未来”的部分执行摘要。本文的英文全文长达64页，需要全文的朋友，请联系微信：millerdeng95）

【执行摘要】自闭症影响全球约7800万人，由于其普遍性和对个人和家庭的影响程度，自闭症是一种具有全球性的重要性疾病。在过去的20年中，自闭症的意识显著提高，但最引人注目的是，在改善高度异质的自闭症人群的生活结果方面还有很多工作要做。这种改变将取决于对关注实际临床问题的科学投资，以及承认变革和成长潜力的社会和服务系统，以及自闭症患者及其家庭的各种复杂需求，他们的生活可能会因此而努力改变。

柳叶刀委员会关于“自闭症护理和临床研究的未来”旨在回答未来5年内可以做些什么，来满足全球自闭症患者和家庭当前需求的问题。自闭症是一种神经发育障碍，通常在儿童早期开始表现并影响整个生命周期的社会交流和行为。在过去的60年里，自闭症和其他神经发育障碍引起了科学界的极大兴趣。在基础科学和应用科学的许多领域都取得了实质性进展，但对自闭症的认识和理解的局限也非常明显。出于临床目的，有关的评论和指南已经激增，尽管许多建议所依据的数据通常来自短期干预措施，这些干预措施旨在获得希望（但尚未有信心）为长期收益做出贡献的特定技能发展。然而，围绕关键问题的巨大差距仍然存在，例如哪些干预措施和支持策略对谁和何时有效，以及哪些干预措施会导致超出其近期结果的变化。在这些悬而未决的问题背后，是关于什么是改变的积极因素或机制（行为或神经生物学）的信息极度匮乏。这些问题尤其重要，因为自闭症影响从幼儿到老年人，并且几乎总是伴随着其他对终身结果有重大影响的发育、行为和心理健康困难或状况。 

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因为自闭症是由社会交流和感觉、受限和重复的行为和兴趣的交叉定义的，所以自闭症是一种相对特定的障碍。 然而，它也是许多神经发育障碍中的一种，它可以与之共享许多方面。 我们认为，有时将自闭症视为一种特殊情况很重要，而在其他时候，识别与其他神经发育障碍的重叠更为合适。 在个人、家庭、文化和区域多样性的背景下，我们提出阶梯式个性化干预和服务模式（基于测试它们及其实施的重点研究）可以改变遍及世界的自闭症患者和其他神经发育障碍患者的生活。

[Executive summary] Affecting about 78 million people worldwide, autism is a condition of global importance because of its prevalence and the degree to which it can affect individuals and families. Autism awareness has grown monumentally in the past 20 years, yet most striking is that much more could be done to improve life outcomes for the highly heterogeneous group of people with autism. Such change will depend on investments in science focused on practical clinical issues, and on social and service systems that acknowledge the potential for change and growth as well as the varied, complex needs of the autistic individuals and their families whose lives could be changed with such an effort.

    The Lancet Commission on the future of care and clinical research in autism aims to answer the question of what can be done in the next 5 years to address the current needs of autistic individuals and families worldwide. Autism is a neurodevelopmental disorder that typically begins to manifest in early childhood and affects social communication and behaviours throughout the lifespan. Autism and other neurodevelopmental disorders have seen a tremendous influx of interest from the scientific community in the past 60 years. Substantial progress has been made in many areas of basic and applied science, but the limits of the knowledge and understanding of autism are also very clear. For clinical purposes, reviews and guidelines have proliferated ,although the data on which many recommendations are based are typically from short-term interventions that address acquisition of specific skills that are hoped—but not yet known with confidence—to contribute to long term gains across development. However, large gaps around key questions remain, such as what interventions and support strategies are effective for whom and when, and which interventions lead to changes beyond their proximal outcomes. Underlying these outstanding questions is a deep scarcity of information about what are the active elements or mechanisms, behavioural or neurobiological, for change. These issues are particularly important because autism affects from toddlers to elders and is almost always accompanied by other developmental, behavioural, and mental health difficulties or conditions that have major implications for lifelong outcomes.

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Because it is defined by the intersection of social communication and sensory, restricted, and repetitive behaviours and interests, autism is a relatively specific disorder. Yet, it is also one of many neurodevelopmental disorders, with which it can share many aspects. We believe that, at times, considering autism as a specific condition is important, and that at other times, recognition of the overlap with other neurodevelopmental disorders is more appropriate. In the context of individual, familial, cultural, and regional diversity, we propose that stepped, personalised models of intervention and services (based on focused research that tests them and their implementation) can change the lives of autistic individuals and those with other neurodevelopmental disorders throughout the world.

论文原文：ProfCatherine Lord, PhD, Prof Tony Charman, PhD, Alexandra Havdahl, PhD, Prof Paul Carbone, MD, Prof Evdokia Anagnostou, MD, Prof Brian Boyd, PhD, et al. (2022). The Lancet Commission on the future of care and clinical research in autism. The Lancet Commission. 399 (10321) : 271-334. https://doi.org/10.1016/S0140-6736(21)01541-5