2026-04-28 11:14 PM UTC / 路透社
作者：罗宾·雷斯波特
2026年4月28日 11:14 PM UTC 更新于45分钟前
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Item 1 of 2 2025年4月16日，美国华盛顿，美国卫生与公众服务部（HHS）部长小罗伯特·F·肯尼迪在一场新闻发布会上讨论美国疾病控制与预防中心（CDC）最新的自闭症与发育障碍监测（ADDM）网络调查结果。路透社/伊丽莎白·弗朗茨/档案照片
[1/2]2025年4月16日，美国华盛顿，美国卫生与公众服务部部长小罗伯特·F·肯尼迪在该部门举行的新闻发布会上讨论美国疾病控制与预防中心最新自闭症与发育障碍监测网络调查结果…… 获取授权许可，打开新标签页查看更多内容
- 摘要
- 联邦专家小组建议美国各机构将“重度自闭症”一词用于那些支持需求最高的人群
- 委员会敦促为自闭症患者改善医疗护理与安全保障
- 本周二的会议是肯尼迪今年1月改组该委员会以来的首次跨部门自闭症协调委员会会议
4月28日（路透社）——美国卫生部长小罗伯特·F·肯尼迪任命的一个顾问委员会周二建议政府将“重度自闭症”一词用于那些支持需求最高的人群，并填补自闭症患者医疗护理方面的空白。
跨部门自闭症协调委员会负责指导联邦政府每年约20亿美元的自闭症研究资金分配，并协调美国国立卫生研究院、疾病控制与预防中心等政府机构之间的相关工作。
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今年1月，肯尼迪任命了新的主席以及该委员会全部20名公众成员。另有22名成员代表联邦政府机构。
这位卫生部长新任命的成员中有超过三分之一曾宣扬已被揭穿的疫苗与自闭症相关联的说法，这一说法正是肯尼迪一直支持的，与已确立的科学结论相悖，这引发了一些自闭症研究者的担忧。该委员会的大多数公众成员都是自闭症儿童的父母或自闭症患者本人。
肯尼迪将自闭症作为其任期内的标志性议题，并强调了一生中支持需求最高的自闭症群体的困境。
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2021年，负责评估自闭症研究与服务的国际专家小组《柳叶刀》委员会将重度自闭症人群定义为存在严重智力障碍或语言交流极少、需要全职照护的人群。2023年，美国疾控中心估计，26.7%的8岁自闭症患者符合重度自闭症的标准。
一些倡导者对将焦点放在高需求群体上表示欢迎，他们表示，近年来自闭症谱系障碍的定义和诊断范围扩大，涵盖了许多高功能个体，而重度自闭症人群被落在了后面。自闭症群体中的其他人则反对这一分类，认为其没有必要且带有污名化色彩。
“医疗复杂性和功能支持需求最高的个体，是最被旨在帮助他们的研究排除在外的群体，”跨部门自闭症协调委员会主席西尔维亚·福格尔博士说道，她是哈佛医学院精神病学讲师，同时也是一名自闭症儿童的家长。
“现有的医疗体系无法可靠地识别出支持需求最高的人群，在我看来，这正是我们需要用‘重度自闭症’这一功能性分类的原因。”
未被诊断的病症
该委员会还将改善自闭症患者的医疗护理列为优先事项，这些患者往往同时患有胃肠道疾病、睡眠障碍、神经系统疾病、自身免疫性疾病和代谢紊乱等其他健康问题。他们表示，这类疾病有时会被医疗服务人员漏诊，或是被误认为是自闭症的症状，导致患者无法获得关键的治疗。
“自闭症群体中的许多人都面临着由未被诊断的病症、安全风险和更高死亡率带来的极端日常困境，”福格尔说道。
“一些人承受着无法言说的身体疼痛，比如胃肠道疾病、牙科问题或慢性头痛或偏头痛。这种疼痛引发的行为往往被简单归结为自闭症的一部分，”福格尔说，“我在二十年的行医过程中多次目睹这种情况。这是不可接受的。”
该委员会的公众成员——即由肯尼迪任命代表自闭症群体的成员——周二在投票中大多支持向肯尼迪提交相关建议。许多代表相关政府机构的联邦成员则投了弃权票，他们认为各机构需要更多时间来审查这些提案。
该委员会的建议已获通过，将提交给肯尼迪。
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Kennedy’s US advisory board puts focus on ‘profound autism’, improved medical care
2026-04-28 11:14 PM UTC / Reuters
By Robin Respaut
April 28, 2026 11:14 PM UTC Updated 45 mins ago
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Item 1 of 2 U.S. Health and Human Services (HHS) Secretary Robert F. Kennedy, Jr. discusses the findings of the Centers for Disease Control and Prevention’s (CDC) latest Autism and Developmental Disabilities Monitoring (ADDM) Network survey, during a press conference at the Department of Health and Human Services in Washington, D.C., U.S., April 16, 2025. REUTERS/Elizabeth Frantz/File Photo
[1/2]U.S. Health and Human Services (HHS) Secretary Robert F. Kennedy, Jr. discusses the findings of the Centers for Disease Control and Prevention’s (CDC) latest Autism and Developmental Disabilities Monitoring (ADDM) Network survey, during a press conference at the Department of Health and Human… Purchase Licensing Rights, opens new tabRead more
- Summary
- Federal panel recommends US agencies use term ‘profound autism’ for those with highest support needs
- Committee urges improved medical care and safety for autistic individuals
- Tuesday’s meeting was the first IACC meeting since Kennedy remade the panel in January
April 28 (Reuters) – A U.S. advisory committee appointed by Health Secretary Robert F. Kennedy Jr. recommended on Tuesday that the government adopt the term “profound autism” for those with the highest support needs, and improve gaps in medical care for people with autism.
The Interagency Autism Coordinating Committee helps guide federal autism research spending, worth about $2 billion annually, and coordinates efforts among government agencies, such as the National Institutes of Health and the Centers for Disease Control and Prevention.
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In January, Kennedy appointed a new chairperson and all 20 public members on the board. Another 22 members represent federal agencies.
More than a third of the health secretary’s newly appointed members have promoted the debunked link between vaccines and autism that Kennedy has championed, contrary to established science, alarming some autism researchers. Most of the committee’s public members are parents of autistic children or people with autism.
Kennedy has made autism a signature issue of his tenure and highlighted the plight of autistic individuals with the highest need for support throughout the course of their lives.
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In 2021, the Lancet Commission, an international expert panel that assesses autism research and services, designated people with profound autism as those with severe intellectual impairment or minimal verbal communication, and the need for full-time access to a caregiver. In 2023, the CDC estimated that 26.7% of 8-year-olds with autism qualified as profound.
The spotlight on high needs has been welcomed by some advocates who say those with profound autism were left behind as the definition and diagnosis of autism spectrum disorder expanded in recent years to include many high-functioning individuals. Others in the autism community oppose the designation as unnecessary and stigmatizing.
“Individuals with the greatest medical complexity and functional support needs are the most excluded from the research designed to help them,” said IACC Chair Dr. Sylvia Fogel, a psychiatry instructor at Harvard Medical School and parent of a child with autism.
“Existing systems do not reliably capture individuals with the highest support needs, and it’s why a functional designation of profound autism, in my opinion, is needed.”
UNDIAGNOSED CONDITIONS
The committee also prioritized improving medical care for autistic patients who suffer from other health conditions, such as gastrointestinal, sleep, neurological, autoimmune and metabolic disorders. Such illnesses are sometimes undiagnosed by medical providers or assumed to be symptoms of autism, leaving patients without critical care, they said.
“Many in the autism community are facing intense daily hardship driven by undiagnosed conditions, safety risks, and increased mortality,” said Fogel.
“Some experience physical pain that they can’t communicate, from conditions such as gastrointestinal disorders, dental issues, or chronic headaches or migraines. Pain that leads to behaviors that are too often dismissed as just part of autism,” said Fogel. “I have witnessed this repeatedly in my two decades of practice. It is unacceptable.”
The public members of the committee, those appointed by Kennedy to represent the autism community, voted on Tuesday largely in support of making recommendations to him. Many of the federal members, those who represent relevant government bodies, voted to abstain, arguing that the agencies needed more time to review the proposals.
The panel’s recommendations passed and will be sent to Kennedy.
Reporting by Robin Respaut, additional reporting by Ahmed Aboulenein; editing by Michele Gershberg and Bill Berkrot
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