孤独症谱系障碍依照《精神障碍诊断与统计手册》第5版“广谱系化”的诊断使人们容易忽视病情严重患者的特殊医疗需求。为此,2021年孤独症未来照护与临床研究柳叶刀委员会提出“极重度孤独症”概念,特指年龄在8岁及以上、存在重度智力障碍(智商<50)和/或极少甚至完全缺乏语言表达能力,且需要全天候(24 h)照护的孤独症谱系障碍个体。这些患者常合并隐匿性躯体疾病与致死性自伤、紧张症等难治性精神异常,传统阶梯干预策略常难以奏效。该文系统梳理了极重度孤独症的概念界定与临床表型,强调干预重心应转向严重共患病管理与替代沟通构建,并探讨了改良电休克疗法在难治性危重症中的挽救性应用,旨在为极重度孤独症的多学科诊疗及全生命周期支持体系的建设提供循证依据。
The broad-spectrum diagnostic framework for autism spectrum disorder (ASD) in the Diagnostic and Statistical Manual of Mental Disorders (5th ed.) tends to obscure the specific medical and support needs of individuals with severe impairments. In response, the Lancet Commission on the future of care and clinical research in autism proposed the concept of "profound autism" in 2021, referring to individuals with ASD who are aged 8 years or older, have severe intellectual disabilities (IQ < 50) and/or minimal or completely absent verbal communication abilities, and require round-the-clock (24-hour) care. Patients with profound autism often present with occult somatic comorbidities and treatment-resistant psychiatric abnormalities, including life-threatening self-injurious behavior and catatonia, which frequently render traditional stepped-care interventions ineffective. This review systematically summarizes the conceptual definition and clinical phenotypes of profound autism and emphasizes the need to shift the intervention focus toward managing serious comorbidities and establishing augmentative and alternative communication systems. Additionally, the potential application of modified electroconvulsive therapy as a salvage treatment for refractory and life-threatening symptoms is discussed. The aim is to provide evidence-based guidance for multidisciplinary management and the construction of comprehensive lifespan support systems for individuals with profound autism.