自闭症诊断难题

当法国一座古老的玫瑰园变成露天实验室时会发生什么？

What happens when an ancient rose farm in France becomes an open sky laboratory?

印度的美容培训项目如何为经济赋权开辟道路？

And how can a cosmetology program in India offer a road to economic empowerment?

你好。

Hi there.

我是伊莎贝拉·鲁索里尼。

I'm Isabella Russolini.

在欧莱雅集团最新一期《这不是美容播客》中，我们采访了一位有机花农和一位美容学校毕业生，探讨美容如何塑造商业。

And in the latest episode of this is not a beauty podcast from L'Oreal Group, we speak to an organic flower farmer and a beauty school graduate and how beauty shapes business.

现在就在你喜欢的播客平台上收听吧。

Listen now on your favorite podcast platform.

这里是《纽约时报》，我是瑞秋·艾布拉姆斯，为您带来《每日新闻》。

From The New York Times, I'm Rachel Abrams, and this is The Daily.

罗伯特·F·肯尼迪多次将自闭症发病率飙升作为其担任卫生与公众服务部部长的核心使命依据。

Robert f Kennedy junior has repeatedly cited the skyrocketing autism rates as central to his mission as health and human services secretary.

他将责任归咎于从泰诺到疫苗等各种因素，并最近指示疾控中心放弃其一贯立场，即疫苗不会导致自闭症。

He's laid the blame at the feet of everything from Tylenol to vaccines, And he recently instructed the CDC to abandon its long standing position that the latter do not cause autism.

尽管自闭症发病率近几十年来有所上升，但其原因比肯尼迪所陈述的要复杂得多。

But while the rates of autism have increased in recent decades, the reasons are more complicated than what Kennedy has presented.

今天，阿齐姆·库雷希将解释诊断数量增加的真正原因。

Today, Azim Qureshi explains what's really driving the increase in diagnoses.

今天是11月24日，星期一。

It's Monday, November 24.

那么，阿齐姆，'让美国再次健康'运动，尤其是小罗伯特·肯尼迪，确实让自闭症成为焦点。

So, Azine, the Make America Healthy Again movement and RFK in particular have really put autism in the spotlight.

小罗伯特·肯尼迪当然称自闭症为一种流行病。

RFK junior, of course, has called autism an epidemic.

我认为可以说，他在人们心中植入了对自闭症根本原因的许多恐惧。

And I think it is fair to say that he has instilled a lot of fear in people about what the root causes of autism are.

嗯。

Mhmm.

你在报道过程中对此进行了大量思考。

And you've spent a lot of time thinking about this as part of your reporting.

所以我想从这里开始谈起。

And so that's where I'd like to start.

特别是，我想聊聊这些数据。

And in particular, I wanna talk about the numbers.

是的。

Yeah.

几十年来，美国儿童自闭症诊断率一直在稳步上升。

So autism diagnoses among children in The United States have been rising pretty consistently for decades.

2000年是美国疾控中心首次收集相关数据，当时发现每158名8岁儿童中就有1例自闭症诊断。

In the year 2000, which is the first year that the CDC started collecting data on this question, they found that one in one hundred and fifty eight year olds in The United States had an autism diagnosis.

此后他们每年发布的报告中，这个数字都在持续增长。

That number has risen consistently every year that they have published their report.

而他们今年发布的最新数据显示，每31名儿童中就有1例

And the most recent data that they published, which came out this year, found that one in thirty one

哇。

Wow.

岁的儿童被诊断出自闭症。

Year olds has an autism diagnosis.

所以比例从一百五十分之一上升到了三十一分之一。

So it goes from one in a hundred and fifty to one in every thirty one children.

是的。

Yeah.

我的意思是，这增长幅度非常大。

And I mean, that's a huge increase.

对吧？

Right?

而RFK真的把这描述成一种流行病。

And RFK really frames this as an epidemic.

他说，你知道，我们的环境中有什么东西导致自闭症像野火一样蔓延，但这种说法具有误导性。

He says, you know, there's something in our environment that is causing autism to spread like wildfire, But that's misleading.

据我所接触的所有专家都承认，环境因素很可能与我们的基因相互作用，共同导致了自闭症发病率的上升。

You know from all the experts that I've spoken to they've acknowledged that there are environmental factors that likely interact with our genetics that are contributing to the rise in autism.

比如环境污染、人们选择晚育等因素。

You know there's things like pollution for example, people choosing to have children later in life.

但这些最终只能解释这一现象中很小的一部分，而目前已知推动这一增长的最大原因，实际上与我们如何定义自闭症有关。

But those are ultimately a really small part of the explanation for this rise and the biggest reason that we know of that is driving this increase actually has to do with how we define what autism is.

而这个定义在过去几十年里一直在不断扩展。

And that definition has been expanding over the last several decades.

所以你的意思是，这个定义的‘帐篷’变大了，但未必是因为自闭症患者数量在本质上真实增加（尽管这也是部分原因），而是更多人被纳入了这个不断扩展的定义范围。

So basically, you're saying that the tent has gotten bigger, but not necessarily because there is a true fundamental increase in the number of people who have autism, even if that's part of it.

正是如此，更多人群被囊括进这个不断扩大的定义范畴中。

It's that more people are being captured within this expanding definition.

是的。

Yes.

但关于这个‘帐篷’是否扩得过大，争议也日益激烈。

But there has been a growing fight over whether this tent has grown too large.

这些是关于资源的争夺。

These are fights over resources.

还有关于研究优先级的争论。

There are fights over research priorities.

研究这一领域的父母、活动家、医生和科学家们，正开始认真思考社区中的每个人是否都得到了他们所需的支持。

Parents, activists, doctors, scientists who are researching this are starting to really grapple with whether everyone in the community is getting what they need.

考虑到这个广泛定义下的人群需求可能大相径庭。

Given that the needs of people under this very broad tent can be very different.

我长期与之讨论这些日益紧张局势的人中，有一位名叫凯西·洛德的心理学家。

And one of the people I've been talking to for a while about these rising tensions is this psychologist named Kathy Lord.

她的职业生涯基本映射了我们对自闭症认知的发展轨迹。

Her career basically tracks our understanding of autism.

她是自闭症研究领域的传奇人物。

She is a legendary autism researcher.

她一直积极参与制定该障碍的诊断标准。

She has been actively involved in defining criteria for the disorder.

因此她确实处于许多这些变革的中心位置。

So she's really been at the center of a lot of this change.

给我讲讲她的背景故事吧。

Tell me a little bit about her and sort of her backstory.

她是一位临床心理学家。

So she is a clinical psychologist.

嗨，凯西。

Hi, Kathy.

你好。

Hello.

她在加州大学洛杉矶分校工作。

She's at UCLA.

她整个职业生涯都在研究与帮助自闭症患者。

She has spent her whole career studying and working with people with autism.

最初是什么吸引你进入自闭症研究领域的？

What what drew you to the field of autism in the first place?

我想我喜欢这些孩子。

I think I like the kids.

我只是觉得他们非常有趣。

I just thought they're so interesting.

凯西在七十年代读本科时，就开始与那些如今我们称之为自闭症的儿童一起工作。

Kathy, in the nineteen seventies as an undergrad, started working with children who had what today we would call autism.

那时我见到的孩子们，我们都以为他们不会说话。

The kids that I saw then, we assumed they were not verbal.

我们曾以为他们不会说话。

We assumed they couldn't talk.

他们不看我们。

They did not look at us.

凯西接诊的那些孩子，很多都有智力障碍。

The kids that Kathy was seeing, many of them had intellectual disabilities.

有些孩子会来回摇晃身体，避免眼神接触。

Some of the kids would be rocking back and forth, avoiding eye contact.

他们中许多人不会说话、不能说话，或者只会重复别人对他们说的话。

Many of them wouldn't talk, couldn't talk, or even would just repeat what was said back to them.

我们不明白为什么一个孩子会像海星那样用不寻常的方式移动手指？

We didn't understand why would a child be moving their fingers in an unusual way like starfish?

或者为什么当他们——你知道的——有人把东西放在他们意想不到的地方时，他们会感到不安？

Or why were they upset when they, you know, someone put something down in a place that they hadn't expected it to be?

而当时，心理学家和精神科医生认为这可能是一种最初的形式，

And at the time, psychologists and psychiatrists thought maybe this was a form of Originally,

当时这既被视为儿童精神分裂症，又被称为婴儿期精神病。

it was both considered childhood schizophrenia or infantile psychosis.

为什么他们认为这符合精神分裂症或精神病的特征？

Why did they think it fit the profile of schizophrenia or psychosis?

我认为部分原因在于，当人们做出我们无法理解的行为时，我们就会使用精神病这个术语。

I think part of it is that we use the term psychosis when people do things that we don't understand.

临床医生当时是如何告知家属的？比如对父母说了什么？他们建议采取哪种治疗方案？

And what were the clinicians telling the families, like telling the parents, and what kind of treatment were they suggesting?

是的。

Yeah.

那时候，父母基本上被告知对此无能为力。

So at that time, parents were basically told that there was nothing that can be done.

你知道，甚至不要尝试。

You know, don't even try.

直接把他们送走。

Just send them away.

他们应该把孩子送走。

And that they should send their kids away.

过好自己的生活，因为他们永远做不了任何事——虽然这不是事实，但当时人们确实这么告诉他们。

And live your life because they'll never be able to do anything, which is not true, but that is what people were telling them.

那确实是精神病学史上相当黑暗时期的鼎盛阶段，当时机构收治非常普遍。

It was really in the heyday of a pretty dark period in psychiatry's history where institutionalization was very common.

孩子们经常被送到州立机构，在那里他们基本上与社会隔绝。

Kids were sent off to often state run institutions where they were basically hidden from society.

那么这种改变是从何时以及如何开始的？

So when and how does that start to change?

是的，当凯西进入这个领域时，正值一个观念转变的时期——从认为这些孩子无法被帮助，转变为意识到心理学家确实可以采取一些措施来帮助他们。

So, yeah, when Kathy was entering the field, this is a time when there was a shift away from thinking that these kids could not be helped to realizing that actually there were things that psychologists could do that could help these kids.

我该如何既调整他们周围的世界，又该如何给予他们工具，比如沟通工具，使他们能够学习？

How do I both adjust the world around them, but also how do I give them tools, for example, to communicate that would allow them to learn?

随着这一转变在1980年进行，自闭症被纳入了《精神疾病诊断与统计手册》。

And as this shift is underway in the year 1980, autism gets added to the Diagnostic diagnostic and statistical manual of mental disorders.

嗯。

Mhmm.

这被认为是精神病学的圣经。

And this is considered the bible of psychiatry.

该诊断在当年被添加的事实具有重大意义。

The fact that the diagnosis was added in that year was really significant.

所以这是自闭症首次被正式确认为一种诊断。

So this is the first time autism is officially recognized as a diagnosis.

接下来情况如何发展？

Where does it go from there?

是的。

Yeah.

当时，自闭症的定义非常狭窄。

So at the time, the definition for autism was very narrow.

DSM指出其核心特征包括：对他人的反应缺失、语言障碍，以及所谓对环境各方面产生的怪异反应。

The DSM said that the essential features were a lack of responsiveness to other people, language problems, and quote bizarre responses to various aspects of the environment.

所有这些症状必须在患儿出生后的前30个月内显现。

And all of that had to develop in the first thirty months of their lives.

DSM特别强调自闭症被认为极其罕见，估计每万名儿童中约有2至4例确诊。

The DSM specifically said that autism was considered very rare and it estimated that something like two to four kids in every ten thousand would have this diagnosis.

但几乎从一开始，关于自闭症实质及其定义标准就存在诸多争议。

But pretty much from the get go, there were questions around what autism actually was, how it should be defined.

人们开始思考：等等，有些没有语言发育迟缓的人，实际上也表现出与自闭症儿童相同的社会交往障碍。

Were thinking that, wait a minute, there are people that don't have language delays, but who actually have some of the same social difficulties that autistic kids have.

临床医生们当时对自闭症的本质提出了非常尖锐的问题。

Clinicians were asking really sharp questions about what autism really was.

他们提出疑问：如果一个孩子没有语言发育迟缓呢？

They were asking, what if a kid does not have a language delay?

如果他们能够说话，但说话方式与众不同呢？

What if they are able to speak, but they speak differently?

而且我认为人们也越发意识到，认知障碍（如智力障碍）虽然是自闭症的一个特征，但并非所有自闭症患者都具备。

And I think also people were more aware that cognitive disabilities, like intellectual disabilities, are a feature, but they're not always there for autism.

并非每个自闭症患者都伴有智力障碍。

Not everybody with autism has an intellectual disability.

当各种孩子表现出看似相同症状的不同表现时，我们该如何界定这种障碍的边界？

How do we sort of draw lines around this disorder when there seem to be all sorts of kids with sort manifestations of what seems like the same thing.

于是我们意识到：等等，我们需要扩大这个定义范围。

We then said, wait a minute, we need to make this broader.

大约就在那时，自闭症谱系的概念首次被提出——或许这是一系列连续的特征，而我们现有的自闭症定义可能过于狭隘了。

And that's sort of when this idea of the autism spectrum gets introduced for the first time, that maybe this is sort of a continuum of traits and we're thinking a little too narrowly in the definition of autism that we have.

因此，医学界在1994年采取了应对措施，发生了两个重大变化。

So the way the medical community deals with this is in 1994, two really big changes happened.

第一，他们放宽了自闭症本身的诊断标准。

One, they loosen the criteria for autism itself.

第二，他们创建了一个名为阿斯伯格综合征的新相关诊断，这基本上涵盖了我们刚才讨论的许多边缘案例。

And second, they create a new related diagnosis called Asperger's, and that sort of captures a lot of the edge cases that we were just talking about.

这是我们在拓展自闭症谱系概念上迈出的第一步。

So it's the first step in really a broadening of what we think of as the sort of constellation of autism.

那么扩大定义并纳入另一组儿童群体，这有助于厘清自闭症的界定吗？

So does broadening the definition and also capturing this other group of kids, does that help settle the question of what autism is and isn't?

理论上应该如此，但后来凯西进行了一项研究，试图观察人们实际被诊断的情况。

I mean, it was supposed to, but then Kathy does this research that attempts to look at how people are actually being diagnosed.

我们开展了一项研究，对数千名儿童进行了相同系列的诊断测试。

We did a study where thousands of kids were seen and all given the same diagnostic batteries.

她发现阿斯伯格综合征尤其是一个相当模糊的诊断。

And she finds that Asperger's in particular is a really squishy diagnosis.

决定一个孩子是否被诊断为阿斯伯格综合症，更多取决于他们遇到哪位临床医生，而非他们符合哪些诊断标准。

That what determines whether a child would get diagnosed with Asperger's had more to do with what clinician they saw than what criteria they met.

中西部的诊所可能诊断某人为自闭症，而东海岸的诊所则可能认为他们患有阿斯伯格综合症。

The clinic in the Midwest would say somebody had autism and a clinic in the East Coast would say they had Asperger's.

这清楚地表明这些定义仍然不够具体，也缺乏可靠性。

It made clear that these definitions are still not specific enough and they're not reliable.

这种情况非常混乱，导致一些孩子可能在一生中先被诊断为自闭症，然后是阿斯伯格综合症，有时又不得不重新回到自闭症的诊断。

It was very confusing and resulted in kids who often over a lifetime might get an autism diagnosis, then an Asperger's diagnosis, and then sometimes have to come back to an autism diagnosis.

因此从科学角度来看，这确实显得毫无意义。

So it really seemed like scientifically, this is not useful.

诊断之所以重要，是因为它是获得所需特定医疗关注的关键，也是获得学校中能提供支持的具体服务的关键。

Diagnoses matter because diagnoses are the key to getting the specific medical attention that you need, to getting the specific services at school that are going to help support you.

诊断对于行为疗法的保险报销也至关重要。

A diagnosis is also key for insurance coverage for behavioral therapy.

此外，诊断还关乎个人及其家庭如何理解自身身份以及他们所面临的困境。

And then they also matter at the level of how a person and their family conceives of who they are and what they're struggling with.

听起来这对个人意义重大，在资源获取方面也相当重要。

So it sounds like it's both meaningful personally, but also quite meaningful in terms of resources.

正如你提到的，对相关人员而言，这关系到他们能获得什么资源，无论是医疗保健、学校资源还是其他方面。

As you mentioned, like there are meaningful stakes here for the people involved in terms of what they get access to, whether it's health care or school resources or beyond.

是的，完全正确。

Yes, exactly.

因此，这促使医学界重新思考如何定义自闭症。

And so that led to the medical community rethinking once again how they are defining autism.

于是在2013年，凯西实际上参与了制定这一变革的委员会。

And so in 2013, Kathy was actually on the committee that made this change.

他们基本上认定，我们划分的这些界限既不可靠也不一致。

Basically what they decided was these lines that we're drawing are not reliable, they're not consistent.

他们决定通过将所有分类合并为一个单一诊断来解决这个问题。

And the way that they decided to resolve this issue was to fold everything together under one single diagnosis.

也就是自闭症谱系障碍。

So autism spectrum disorder.

这意味着那些严重残疾的孩子，那些可能无法说话或可能有智力障碍的孩子，与那些以前被诊断为阿斯伯格综合症的人得到了相同的诊断。

And that meant that the kids who were severely disabled, the kids who maybe couldn't speak or maybe had an intellectual disability had the same diagnosis as someone who would have formerly been diagnosed with Asperger's.

所以基本上，阿斯伯格作为一个类别正在被淘汰。

So basically, Asperger's as a category is getting eliminated.

自闭症的定义正在扩大，整个范围基本上变得更广了。

The definition of autism is expanding, and the whole tent basically is getting bigger.

它正被认可为一个统一的范畴。

And it's being recognized as a single tent.

要知道，以前我认为人们认识到这些事物是相互关联的。

Know, before I think there was recognition like these things are related to each other.

现在它被视为一个整体，一群人。

Now it's being viewed as one thing, one group of people.

与我们一直在讨论的这些变化并行的是，还出现了后来被称为神经多样性运动的兴起。

And sort of in parallel to the changes that we've been talking about, there was also the growth of what became known as the neurodiversity movement.

这场运动真正开始以不同的视角看待自闭症，并拒绝将其视为需要治愈的疾病。

This movement was really about beginning to view autism through a different lens and rejecting the idea that it was a disease in need of a cure.

我想先简单谈谈自闭症究竟是什么。

I think I'll start out and just talk a little bit about what exactly autism is.

自闭症是一个很广的谱系。

Autism is a very big continuum.

神经多样性运动中的倡导者，比如坦普尔·葛兰汀，通常属于谱系中较温和的一端，或者说，过去可能被诊断为阿斯伯格综合症。

Often the advocates in the neurodiversity movement like Temple Grandin were on the milder end of the spectrum or, you know, would have formerly had an Asperger's diagnosis.

爱因斯坦、莫扎特和特斯拉在今天很可能都会被诊断为自闭症谱系。

Einstein and Mozart and Tesla would all be probably diagnosed as autistic spectrum today.

他们强调，这些特征中的许多不应被视为病态，而可以看作只是差异。

And they emphasized that many of these traits, instead of being seen as pathologies, they could be seen as just differences.

有时他们甚至称这些为超能力，认为这些特质能让自闭症患者以对社会极具价值的不同方式看待世界。

Know, sometimes they even referred to them as superpower, that they could be things that made a person, an autistic person, see the world in a different way that was actually really valuable to society.

在我们的投资委员会会议上，我们确实会讨论这位创始人是否具备适当的平衡

Literally in our investment committee meetings, we talk about whether or not this founder has the right balance of his

和他的。

and his.

马克·扎克伯格的妹妹曾说过，要在科技行业取得成功，你需要一点'Riz'和一点'Tiz'。

Mark Zuckerberg's sister is quoted as saying that, you know, to succeed in the technology industry, you need a little bit of the Riz and a little bit of the Tiz.

'Riz'指的是魅力，而'Tiz'则代表自闭特质。

Riz being charisma and Tiz being autism.

神经多样性是一种超能力，我们寻找那些以不同方式生活的人。

Neurodivergence is a superpower, and we look for people that live their lives differently.

我认为它还体现了一种专注和直率。

And I think it also represents an intensity and directness.

这些早期活动家努力的下游效应，就是社会对自闭症更广泛的认知和接纳。

Downstream from the efforts of those early activists was just a broader awareness and embrace of autism in society.

实际上我正在创造历史，成为首位主持《周六夜现场》的亚斯伯格症患者。

I'm actually making history night as the first person with Asperger's to host SNL.

就像埃隆·马斯克在《周六夜现场》节目上公开表示自己曾被诊断为亚斯伯格症。

You have that at the level of Elon Musk going on Saturday Night Live and saying at the time that he had an Asperger's diagnosis.

或者至少是第一个承认此事的人。

Or at least the first to admit it.

所以我今晚不会和演员们有太多眼神交流。

So I won't make a lot of eye contact with the cast tonight.

现在有一种对自闭症的文化接纳，你知道，这种接纳延伸到了媒体和电视领域。

There's sort of a cultural embrace of autism that, you know, extends to media and TV.

比如我们有《生活大爆炸》。

We have, you know, The Big Bang Theory.

我意识到今晚你也是独自一人。

I realize you're also on your own tonight.

所以如果你某个时刻发现自己无事可做，请不要打扰我。

So if at some point you find yourself with nothing to do, please do not disturb me.

《自闭症也有爱》。

Love on the spectrum.

我我我想想不出说什么，但但但我还是很开心。

I can't I can't think think can't think of anything to say, but but but I'm still having a good time.

我也是。

Me too.

《芝麻街》里有一个自闭症角色。

We have a character with autism on Sesame Street.

朱莉娅不会那么说。

Julia doesn't say that.

没错。

That's right.

她可能不会如你所愿，比如和你击掌。

And she may not do what you expect, like give you a high five.

是啊。

Yeah.

她做事方式就是有点与众不同。

She does things just a little differently.

所以这确实是在摆脱对自闭症的污名化，在某些情况下甚至以自闭症标签为荣。

So it's really this movement away from stigmatizing autism and being in some cases proud of autism as a label.

阿津，真的很惊人，'自闭症'这个标签在我有生之年发生了如此巨大的变化。

It's really striking, Azine, how the label autistic has really changed so dramatically just in my lifetime.

是的。

Yeah.

我认为这确实是神经多样性运动的一大胜利。

I think this is all really a victory for the neurodiversity movement.

随着污名逐渐消退，对许多家庭而言，如果孩子面临这些挑战，获得诊断在某种程度上反而成为了一种需求。

And the stigma begins to fade so much that for a lot of families, it actually becomes desirable in some ways to have a diagnosis for your kid if they have some of these struggles.

这实际上成为他们获得认可的一种方式，并且能够获取可能对他们有帮助的资源。

It actually becomes a way for them to be validated and again, you know, be able to access resources that might be able to help them.

但所有这些变化——诊断数量的增加和意识的显著提升——最终给自闭症群体本身带来了许多意想不到的后果。

But all of these changes, the increase in diagnoses and the really increased awareness, all of this ends up leading to a lot of unintended consequences for the autism community itself.

我们稍后回来。

We'll be right back.

我是布莱恩·罗森塔尔。

I'm Brian Rosenthal.

我是《纽约时报》的调查记者。

I'm an investigative reporter at The New York Times.

我父亲是位科学家。

My dad is a scientist.

我的职业生涯一直致力于科学教学与研究。

My career has been devoted to scientific teaching and research.

我记得小时候，我并不完全明白他每天在做些什么。

I remember growing up, I didn't fully understand what he was doing every day.

但现在我从事调查记者工作后，我确实理解了。

But now that I work as an investigative journalist, I do understand.

所以你必须从事实出发。

So you have to start with facts.

基于这些事实，会产生一个假设，然后你就要努力验证这个假设。

From those facts, a hypothesis appears, and then you work on trying to test that hypothesis.

我也在做同样的事——获取文件、分析数据，并尽可能多地与人交谈以查明真相。

I do the same thing, obtaining documents, crunching the data, and I talk to as many people as possible to get to the bottom of the story.

在无法证实某件事的真实性之前，《纽约时报》是不会发布的。

The New York Times does not publish until we can prove that something is true.

最优秀的科学家之所以能进行如此深入的研究，是因为他们获得了大学或政府的资助。

The best scientists are able to do that deep work because they receive funding from their university or from the government.

我们记者则依赖于订阅用户的资金支持。

We as journalists depend on funding from subscribers.

您可以通过订阅《纽约时报》来支持这类工作。

You can support that type of work by subscribing to The New York Times.

那么阿齐姆，在休息之前，

So Azim, before the break,

你提到自闭症诊断范围扩大带来了意想不到的后果。

you mentioned that the widening group of people diagnosed with autism had unintended consequences.

请解释一下这些后果是什么。

Explain what those were.

虽然扩大诊断范围确实让更多人获得了帮助，但也纳入了需求各不相同的各类人群。

So while broadening the tent did expand access to help for a huge number of people, it also brought in many different kinds of people with many different kinds of needs.

这引发了关于在资源极其有限的情况下，哪些需求应该优先满足的争议。

And that has raised these tensions over which of those needs get prioritized in a world where there's a really limited pile of resources to help.

我们主要在两大领域看到了这种情况。

And there's two really big areas where we see this.

首先是学校。

And the first is schools.

你知道，我采访了许多有重度自闭症孩子的家庭，他们说随着这些年轻度残疾儿童数量的大幅增加，他们的孩子更难获得真正适合的学校服务。

You know, I spoke with a lot of families who had kids with severe autism who said that as the number of kids with less severe disabilities has increased so much over the years, it's made it harder to access school services that are actually geared towards their kids.

他们的孩子需要更多帮助和支持才能度过每一天。

Their kids needing a lot more help and a lot more support to get through the day.

有家长告诉我，他们的孩子被多所学校拒收。

I talked to parents who said that their kids had been kicked out of multiple schools.

基本上，学校告诉他们，这些孩子自闭症太严重，不适合在专门为自闭症儿童设立的班级里。

Basically, they're being told their kids are too autistic to be in the classrooms that are actually designated for kids with autism.

还有一位家长告诉我，她不得不让儿子退学，因为他在学校会'出走'——这个词指的是逃跑行为。

I spoke with another parent who talked about having to actually pull her son out of a school where he was eloping, the word for running away

嗯。

Mhmm.

这是重度自闭症儿童中常见的问题。

Which is a common problem among kids with severe autism.

而学校没有设置防护门。

And the school didn't have gaits.

对他来说那根本不是一个安全的环境。

It was just not a safe environment for him.

实际上，国家重度自闭症委员会进行的一项调查发现，在他们调查的800名家长中，80%的人表示，他们被告知自己的孩子对于专为自闭症儿童设计的项目来说都太过扰乱秩序。

And there was actually a survey that was conducted by the National Council for Severe Autism that found that, you know, of the 800 parents that they surveyed, eighty percent said that they had been told that their kid was actually too disruptive even for programs that were geared towards kids with autism.

这些家庭感到非常沮丧，因为资源池的扩展速度跟不上自闭症儿童数量的增长速度。

So these families are really frustrated because the pool of resources is not expanding at the same rate as the number of children with autism is expanding.

他们实际上发现越来越难为孩子获得所需的帮助，而这些孩子确实需要大量帮助。

And they're actually finding it harder to get the help that they need for their kids, and their kids need a lot of help.

让我震惊的是，多年来为消除自闭症污名化所做的努力。

What is striking me here is that years of work went into destigmatizing autism.

而这一切的最终结果是，越来越多的人被纳入社会的不同领域，包括学校和课堂，更自豪地公开谈论自己的状况。

And the end result of that is that you have people increasingly being included in different aspects of society, included in schools, included in classes, being prouder to talk openly about their condition.

然而，这也意味着更多人需要争夺有限的资源。

However, that has also meant more people competing for a finite number of resources.

讽刺的是，最终结果似乎是，正如你提到的，那些需求最迫切的学生反而被排除在教室等场所之外，因为他们被告知：'我们根本没有足够的资源在这个环境中支持你，你需要去别处寻求帮助。'

And the irony of this is that the net effect seems to be that the students with the most severe needs are being excluded from places like the classroom, as you mentioned, because they are being told, we simply do not have the resources to support you in this environment, and you're going to need to go elsewhere.

是的。

Yeah.

确实如此。

Absolutely.

没错。

Yeah.

我从无数重度自闭症儿童的父母那里都听到过这种说法。

And I've heard that from countless parents of kids with severe autism.

嗯。

Mhmm.

我们在自闭症研究领域也看到了非常类似的情况。

We've seen a really similar thing play out in terms of autism research.

尽管每年投入自闭症研究的资金大幅增长，我们却看到针对最严重功能障碍患者的研究实际上在减少。

Even as the amount of money that has gone towards researching autism has grown substantially year over year, we've actually seen a decrease in studies that are focused on people with the most severe impairments.

我曾与波士顿一位儿童精神病学家交谈，他回顾了1991至2013年间所有治疗研究，发现纳入重度自闭症参与者的研究比例从约95%骤降至仅35%。

I spoke with a child psychiatrist in Boston who actually did a review of all treatment studies from 1991 to 2013, And he found that the proportion of studies that included participants with severe autism declined from something like ninety five percent of the studies to just thirty five percent.

这背后是由一些非常实际的 logistical 因素和关于如何开展这类研究的某种观点所驱动。

And this is being driven by some very sort of logistical factors and a sort of perspective on how this research should be approached.

要知道，一个患有严重深度自闭症的人无法上网填写调查问卷。

You know, a person with severe profound autism can't go online and fill out a survey.

通过在线问卷收集大量人群数据确实是非常便捷的方式。

You know, that's a really easy way to get data on large groups of people is to have them fill out online surveys.

他们也无法在嗡嗡作响的脑部扫描仪里静躺一小时。

They also can't go sit in a brain scan machine that is loudly humming for an hour.

与此同时，关于自闭症患者生活的研究重点已从寻求治愈或治疗自闭症这类问题，转向了对谱系中症状较轻者更为重要的问题和关切。

And at the same time, the research priorities around autistic people's lives have moved away from the sort of questions that are seeking a cure or a treatment for autism and more towards the sorts of questions and concerns that are of a lot more importance to people on the milder end of the spectrum.

比如心理健康或就业相关的问题。

So questions around mental health or employment.

与我交谈过的重度自闭症儿童的父母表示，这些关切与他们孩子的生活毫无关联。

And, you know, the parents of the severely autistic kids who I spoke with said those concerns do not relate in any way to their kids' lives.

他们的孩子正在为诸如进食或学习说话这类基本问题而挣扎。

You know, their kids are struggling with things like eating or or learning how to talk.

确实。

Right.

对这些家庭来说，就业根本不在考虑范围内。

Employment is not gonna be an option for these families.

他们有着不同的关切。

They have different concerns.

对其中许多人而言确实如此。

For a lot of them, it won't be.

因此将这一群体混为一谈，导致在如何解决这些问题上产生了诸多分歧。

So this group being lumped together has led to a lot of disagreements over how to approach these problems.

听起来你所描述的很多讨论，实际上并非试图理解自闭症的本质。

It sounds like a lot of the discussion that you're describing is actually not about trying to understand what autism is.

实际上，这关乎这些诊断能为家庭解锁哪些资源。

It's actually about what kind of resources those designations unlock for families.

我能想象这可能会导致家庭之间相互对立。

And I can imagine that that could maybe pit families against one another.

这是否有些过火了？

Is that going a step too far?

不。

No.

我认为这种动态确实正在上演。

I think that is definitely a dynamic that is playing out.

我认为社区中的分界线比这更复杂，实际上是这些重度自闭症儿童的父母现在与活动人士——那些自我倡导者、自闭症患者本人——产生了分歧，他们说，作为自闭症社区成员，我们有着你们无法理解的共同经历。

I think the dividing line in the community is a little more complicated than that too in that it's really these parents of the kids with severe autism who are now at odds with activists, who are self advocates, who are autistic people themselves, who say, you know, we have a shared experience as members of the autistic community that you can't understand.

我认为这是社区中一个非常棘手的动态：当需求如此广泛时，谁有权代表社区发声，而处于谱系最严重端的人往往无法为自己发声。

And I think that is a really difficult dynamic that has played out in this community is who gets to speak for the community when there are such broad needs and the people on the most severe end of the spectrum often cannot speak for themselves.

凯西，在你的实践中是否曾有过这样的时刻，让你意识到这种诊断范围的扩大可能存在弊端？

Kathy, was there sort of a moment in your own practice where you realized there might have been a downside to this expansion?

比如，这是否带来了一些我们未曾预料的负面后果？

Like, this is having some negative consequences that we didn't prepare ourselves for?

是的。

Yes.

我...我想是的。

I I think so.

凯西在一个讨论自闭症患者住房问题的委员会中也有类似经历。

And Kathy has this experience as well on a committee where they are discussing housing for autistic people.

当时有一位自闭症自我倡导者，还有其他来自不同机构的人员。

And there was an autism self advocate and then a bunch of other people from different agencies.

她与一位自闭症自我倡导者同在一个委员会，这位倡导者强烈反对集体住所的概念，认为这基本上是把我们带回了精神病院制度那种我们早已摒弃的黑暗时代。

She is on the committee with an autistic self advocate who is really pushing against the idea of group homes, arguing that basically it's taking us back to the dark days of psychiatric institutionalization that we've really moved away from.

我说的集体住所，是指四五个需要照顾的人与两名护理人员同住一栋房子的模式。

When I say group home, I'm thinking of like four or five people who live in a house with like two other people who are helping take care of them.

她突然意识到了这一点。

And she has this realization.

我觉得他们不明白这些人除了和年迈且无法照顾他们的父母同住外，无处可去。

I felt like they didn't understand that these are people that have nowhere to live except with their parents who are getting older and can't take care of them.

她认为那位自我倡导者没有意识到，这是为那些需求最迫切、需要全天候护理、无法独立生活的人准备的。

She felt like that the self advocate did not understand that this is for people who have the most severe needs, who do need round the clock care, who cannot live independently.

但我认为他们表现得好像自己是所有自闭症形式的专家。

But I think the idea that they were representing autism as if they experts on all forms of autism.

这确实是我难以接受且难以忘怀的一点。

That was certainly something that I had a hard time with that I won't forget.

她谈到这段经历如何让她真正担忧：谁有权代表自闭症群体的体验发声，谁能为这个群体做出选择，谁能获得代表权和资源——由于这一诊断所涵盖的经验范围如今变得如此广泛，这些问题变得更加复杂。

And she talks about how that experience really made her worry about who gets to speak for the experience of autism, who gets to make choices for that community, who gets represented, who gets resources, has been made much more difficult by just how broad the range of experience contained in this diagnosis has now become.

所以当凯西看到这些意外后果不断显现时，她认为解决方案是什么？

So as Kathy sees these unintended consequences playing out, what does she see as the solution?

你能谈谈关于深度自闭症这个分类的提案吗？比如这个分类是何时出现的，当然还有你参与其中的经历？

Can you talk about the the proposal of this category of profound autism, sort of when that came to be and then obviously your involvement in it too?

是的。

Yeah.

当时，《柳叶刀》为我们提供了组建一个跨学科国际委员会的机会。

So we were I mean, Lancet offered us the opportunity to set up an international commission across disciplines.

凯西和其他一些研究人员、临床医生及自闭症倡导者过去几年一直在提议，或许需要为那些残疾程度最严重的人群设立一个单独的类别。

Kathy and a group of other researchers and clinicians and autism advocates have actually been over the last several years proposing that perhaps there needs to be a separate category for the people with the most severe disabilities.

于是在2021年，她牵头成立了这个名为'柳叶刀委员会'的组织。

So she, in 2021, is leading this thing called the Lancet Commission.

哇。

Wow.

听起来她基本上是在推翻自己几十年来支持的工作，以拓宽分类范围。

So basically, sounds like she's undoing the work that she's backed for decades in order to broaden the category.

是的。

Yes.

在某种程度上是这样。

In a way.

然后我们花了大量时间讨论究竟该如何命名这个类别。

And then there was a lot of discussion about what on earth we call this.

这组专家最终提出的建议是设立一个名为'重度自闭症'的独立分类。

What this group of experts ends up proposing is a separate category that is called profound autism.

他们将此定义为：几乎或完全无语言能力，或智商低于50，或两者兼具，并且需要24小时看护支持。

And the way they defined it is having minimal or no ability to speak or an IQ of less than 50 or both, and requiring twenty four hour access to a caregiver.

这实际上是为了承认该群体中存在需求极为严重的部分人群，并通过标签化使这类人群能够被识别。

So it's really about recognizing that there is a part of this population with very severe needs and and having a label so that that group of people can be identified.

所以本质上，在多年扩展定义后，凯西现在提出的方案将再次分割自闭症谱系。

So essentially, after years of expanding this definition, Kathy is now proposing something that would chop up the spectrum once again.

但这种切割出一个独立群体的实际效果会是什么？

But what would the practical effect of that be, of that cleaving off of one other group?

首先，这并非一个已被正式提出的诊断分类。

First, this is not a actual diagnosis that has been proposed.

'重度自闭症'这个标签多年来已在非正式场合逐渐流行。

Profound autism is a label that has casually grown in use over the years.

我经常听到临床医生使用这个术语。

I hear clinicians using it all the time.

我认为设立这个标签的根本原因归根结底是为了获得认可。

The reason to have this label I think ultimately boils down to recognition.

这种认可意味着这是一个需求极其严重的群体，全天候护理被直接写入定义本身就说明了很多问题。

So recognition that this is a group of individuals with really severe needs, the round the clock care being right there as part of the definition, I think tells you a lot.

由此延伸出的期望是，这个群体将能够获得更多服务资源——他们的家庭多年来一直艰难争取的那些支持。

And I think flowing out from that is the hope that this will be a group that will be able to get more in terms of the services that their families have really struggled to get for them over the years.

但至少目前而言，即便将其划分为独立类别，也不意味着资源会自动流向最需要帮助的人群。

But for now, at least, even if they were to cleave this off into a separate category, it's not like it would direct resources to some of these people that need it most.

是的。

Yeah.

我认为这确实是期望所在，但我们尚不确定结果。

I I think that's certainly the hope, but I don't think we know.

而且很明显，这并非能神奇解决凯西等人所指出的问题的万灵药。

And, you know, it's definitely not clear that this is gonna be a magic solution that fixes these issues that Kathy and others have identified.

考虑到我们讨论过的这些后果，以及部分家长指出的资源分配不均问题，凯西是否认为扩大诊断范围是个错误？

Given all of these consequences that we have talked about and this lopsided allocation of resources that some parents have pointed toward, Does Kathy think it was a mistake to broaden the diagnosis?

尤其是考虑到她现在正试图撤销其中的一些措施。

Just especially given that she's trying to undo some of that now.

我问她是否对自己在扩大诊断标准中所扮演的角色感到后悔。

I asked her if she regretted in any way the sort of role that she played in expanding the diagnosis.

我确实认为这在某种程度上适得其反了。

I do think it has backfired to some degree.

我认为已形成广泛共识，凯西当然也认识到将所有情况归入单一诊断的做法并未奏效。

I think there's broad recognition, and Kathy certainly also recognizes that folding everything under one diagnosis hasn't worked.

关于自闭症认知的整体理念，这些都是非常好的方面。

The whole idea of autism awareness, those are things that are really good.

但我确实认为我们在无意中导致了诊断标准变得异常复杂。

But I do think that we have contributed unwittingly to having diagnoses that are very complicated.

尚不明确的是，在不遗漏任何人的前提下，究竟什么方案能真正解决他们最初试图解决的问题。

What is not clear is what will work and what will fix the problems that they were trying to solve for in the first place without leaving anyone behind.

那些患有深度自闭症孩子的父母或许会对拥有一个独立的诊断标准感到满意， 但这仍无法满足众多需求各异的人群。

The parents of kids with profound autism maybe will be satisfied by having a distinct diagnosis, but that still leaves a lot of people with wide range of needs.

凯西也对此感到担忧。

Kathy is also worried about.

我是说，我不知道该怎么办，如何解决这个问题，因为我认为解决方案不是线性的。

I mean, I don't know what to do, you know, how to solve this because I think the solution is not linear.

不会是简单地将人归入这个群体或那个群体。

It's not going to be, you're in this group, you're in that group.

我是说，难道只有两个群体吗？

I mean, aren't two groups.

我不认为我们能就三个或四个群体达成共识。

I don't think we could agree on three groups or four groups.

我还与一些自闭症自我倡导者交谈过，他们非常担心如果诊断标准被拆分。

I also spoke with autistic self advocates who are really worried about if the diagnosis is split apart.

这样传达的信息是，那些没有严重自闭症的人根本不算自闭症患者。

The message that that sends is that the people who don't have profound autism don't have autism at all.

我认为人们真正担心的是失去支持，那样我们就会把自闭谱系分成'真正的自闭症'和'非真正的自闭症'。

And I think there's a real fear about that support being lost, that then we will be dividing the spectrum up into people with real autism and not real autism.

我也认为这确实是个值得担忧的问题。

And I think that's a real concern too.

怎么

How

我们该如何推进？

do we do we move forward?

我...我不知道。

I I don't know.

凯西，非常感谢你抽出这么多时间，并为我们详细讲解

Kathy, thank you so much for taking all this time and for walking us through all

这一切。

of this.

不，

No.

谢谢。

Thank you.

这感觉有点像是种悲哀的讽刺，像凯西这样付出巨大努力帮助他人、在此过程中消除自闭症诊断污名并拓宽其定义的人如此之多。

It feels a little bit like a sad irony that there have been so many people like Kathy who worked so hard to get people help and in the process destigmatized this diagnosis of autism and expanded what it means.

而正是这样的努力，如今他们却担心可能伤害了那些最需要帮助的人。

And in so doing, they now fear that that work might have harmed some of the people who needed it most.

而且对于这个群体中的每个人来说，什么才是真正的解决方案，目前仍不明朗。

And it is not clear what any real solution for everybody in this community could look like.

是的。

Yeah.

为重度自闭症设立单独分类或许能解决我们讨论的部分问题，但关于差异界限在哪里的疑问依然悬而未决。

You know, having this separate category made for profound autism will maybe solve some of the problems that we've been talking about, but it still leaves a lot of unanswered questions about where is the line between difference?

谁该为如此多元的群体发声？

Who should be speaking for a community that is as broad as this one?

诊断在哪些情况下有益，又在哪些情况下可能造成伤害？

Where are diagnoses helpful and where can they, in some cases, cause harm?

我认为这些正是精神病学领域当前普遍面临的诸多问题，而且至今仍未有定论。

I think these are a lot questions that the field of psychiatry in general is wrestling with right now, and I think those are still unanswered.

阿辛，非常感谢你。

Azine, thank you so much.

是啊。

Yeah.

谢谢邀请我。

Thanks for having me.

我们马上回来。

We'll be right back.

如果你对这个既充满绝望又充满希望的时刻感到困惑，我想说我理解你。

If you find yourself bewildered by this moment where there's so much reason for despair and so much reason to hope all at the same time, let me say I hear you.

我是《纽约时报》观点专栏的埃兹拉·克莱因，也是《埃兹拉·克莱因秀》的主持人。

I'm Ezra Klein from New York Times Opinion, host of the Ezra Klein Show.

对我来说，驱散这种困惑感的最佳方式是与那些能提供理解框架的人交流探讨。

And for me, the best way to beat back that bewildered feeling is to talk it out with the people who have ideas and frameworks for making sense of it.

我们有很多话题可以聊。

There's going to be plenty to talk about.