Steve Silberman: The forgotten history of autism

翻译人员: Yolanda Zhang 校对人员: Bighead Ge

Just after Christmas last year,

就在去年圣诞节过后，

132 kids in California got the measles

加州有132个孩子感染了麻疹,

by either visiting Disneyland

原因是他们去过了迪斯尼乐园，

or being exposed to someone who'd been there.

或是接触了某些去过迪斯尼的孩子。

The virus then hopped the Canadian border,

之后病毒还窜到了美加边境，

infecting more than 100 children in Quebec.

感染了在魁北克的100多个孩子。

One of the tragic things about this outbreak

这次的麻疹爆发中让人非常痛心的是，

is that measles, which can be fatal to a child with a weakened immune system,

尽管麻疹对于抵抗力低的 孩子可能致命，

is one of the most easily preventable diseases in the world.

它同时也是世界上 最容易预防的疾病之一。

An effective vaccine against it

能够有效预防麻疹的疫苗

has been available for more than half a century,

早在半个多世纪前就已经面世，

but many of the kids involved in the Disneyland outbreak

但在这次的迪斯尼麻疹大爆发中，

had not been vaccinated

很多被感染的孩子都未接种过疫苗，

because their parents were afraid

因为他们的家长担心

of something allegedly even worse:

接种疫苗可能会导致一个 更“严重”的问题：

autism.

自闭症。

But wait -- wasn't the paper that sparked the controversy

但是—— 回想一下，那篇

about autism and vaccines

引发此争议的报道

debunked, retracted,

不是早已经被英国医学周刊

and branded a deliberate fraud

揭发、撤回，并且被证实是

by the British Medical Journal?

刻意的欺诈造谣吗？

Don't most science-savvy people

难道略懂些科学的人们

know that the theory that vaccines cause autism is B.S.?

不知道所谓“疫苗引发自闭症”的 理论是胡说八道吗？

I think most of you do,

我相信大多数人是知道的。

but millions of parents worldwide

但是世界上还是有很多家长

continue to fear that vaccines put their kids at risk for autism.

仍然担心注射疫苗会带来 患上自闭症的风险。

Why?

为什么会这样？

Here's why.

我来告诉你为什么。

This is a graph of autism prevalence estimates rising over time.

这是显示自闭症患者数量 普遍性上升的一个统计图表。

For most of the 20th century,

在几乎整个20世纪，

autism was considered an incredibly rare condition.

自闭症都被认为是一种 极其罕见的疾病。

The few psychologists and pediatricians who'd even heard of it

少数几个听说过它的 心理学家和儿科医生，

figured they would get through their entire careers

觉得可能在他们的整个职业生涯中

without seeing a single case.

也不会遇到一个这样的病例。

For decades, the prevalence estimates remained stable

几十年间， 自闭症患者的统计数量都维持稳定，

at just three or four children in 10,000.

在1万个孩子中大概有3到4例。

But then, in the 1990s,

但是到了90年代，

the numbers started to skyrocket.

数字开始飞速上升。

Fundraising organizations like Autism Speaks

像Autism Speaks这样的募款机构

routinely refer to autism as an epidemic,

常常将自闭症描述为一种流行病，

as if you could catch it from another kid at Disneyland.

就好像你去趟迪斯尼乐园 就能被传染一样。

So what's going on?

那么到底发生了什么呢？

If it isn't vaccines, what is it?

如果不是疫苗的问题， 那原因究竟何在？

If you ask the folks down at the Centers for Disease Control in Atlanta

如果你去问亚特兰大疾控中心的人，

what's going on,

这究竟是怎么回事，

they tend to rely on phrases like "broadened diagnostic criteria"

他们的解释多半是“评估标准变松了”，

and "better case finding"

或是“找到病例的能力变强了”，

to explain these rising numbers.

所以统计数量上升了。

But that kind of language

但是这些话

doesn't do much to allay the fears of a young mother

并不能减轻年轻母亲们的恐惧，

who is searching her two-year-old's face for eye contact.

尤其是当她发现自己两岁的 孩子目光游移不定时。

If the diagnostic criteria had to be broadened,

如果诊断标准需要放宽，

why were they so narrow in the first place?

为什么标准在一开始如此严苛？

Why were cases of autism so hard to find

为什么自闭症的病例

before the 1990s?

在1990年代之前如此难找？

Five years ago, I decided to try to uncover the answers to these questions.

五年前，我决定试着 找出这些问题的答案。

I learned that what happened

我的发现是，

has less to do with the slow and cautious progress of science

这个数量的上升并非是由于 科学进展的缓慢和谨慎，

than it does with the seductive power of storytelling.

更多的是因为故事叙述在诱导大众。

For most of the 20th century,

在整个20世纪，

clinicians told one story

医学界都用一个故事来解释

about what autism is and how it was discovered,

什么是自闭症以及它的发现过程。

but that story turned out to be wrong,

但是那个故事后来被证明是错的，

and the consequences of it

而这个故事所造成的后果

are having a devastating impact on global public health.

正对全球公共健康带来灾难性的影响。

There was a second, more accurate story of autism

然后又有了第二个关于自闭症的故事，

which had been lost and forgotten

其准确性更高，但却鲜为人知，

in obscure corners of the clinical literature.

仅在临床研究文献中偶尔提及。

This second story tells us everything about how we got here

第二个故事叙述了我们是 如何走到了今天这个地步，

and where we need to go next.

以及我们之后应该做些什么。

The first story starts with a child psychiatrist at Johns Hopkins Hospital

第一个故事开始于约翰霍普金斯医院， 一位叫做

named Leo Kanner.

Leopard Kanner的儿童精神病医生。

In 1943, Kanner published a paper

在1943年，Kanner发表了一篇论文，

describing 11 young patients who seemed to inhabit private worlds,

描述了11个活在他们自己世界的孩子，

ignoring the people around them,

他们忽略身边的所有人，

even their own parents.

甚至他们的父母。

They could amuse themselves for hours

他们可以自娱自乐长达几个小时，

by flapping their hands in front of their faces,

仅仅只是自己拍手，

but they were panicked by little things

但他们很容易被小事惊扰，

like their favorite toy being moved from its usual place

比如他们最喜欢的玩具

without their knowledge.

没有被放到通常的位置。

Based on the patients who were brought to his clinic,

基于他所接触的这些病患的情况，

Kanner speculated that autism is very rare.

Kanner推测自闭症非常罕见。

By the 1950s, as the world's leading authority on the subject,

到50年代，他作为世界上 研究自闭症的权威，

he declared that he had seen less than 150 true cases of his syndrome

宣称自己只接触了不到 150个“真正病例”，

while fielding referrals from as far away as South Africa.

而慕名而来的诸多患者中 甚至有人来自南非。

That's actually not surprising,

这其实也不奇怪。

because Kanner's criteria for diagnosing autism

因为Kanner诊断自闭症的标准

were incredibly selective.

非常苛刻。

For example, he discouraged giving the diagnosis to children who had seizures

比如他不主张对将患有癫痫的 孩子诊断为自闭症，

but now we know that epilepsy is very common in autism.

但现在我们知道癫痫在自闭症中很常见。

He once bragged that he had turned nine out of 10 kids

他曾经吹嘘说其他医生介绍来的

referred to his office as autistic by other clinicians

疑似自闭症的患者中，十个有九个

without giving them an autism diagnosis.

都不应该被诊断为自闭症。

Kanner was a smart guy,

Kanner是个很聪明的医生，

but a number of his theories didn't pan out.

但他的许多理论都经不起推敲。

He classified autism as a form of infantile psychosis

他将自闭症归类于一种儿童精神错乱，

caused by cold and unaffectionate parents.

是由于缺少来自父母的关爱。

These children, he said,

他说，这些孩子

had been kept neatly in a refrigerator that didn't defrost.

就像被放到了一个无法解冻的冰箱里。

At the same time, however,

然而同时，

Kanner noticed that some of his young patients

Kanner也注意到他的一些幼年患者

had special abilities that clustered in certain areas

在某些领域有着特殊的天赋，

like music, math and memory.

比如音乐，数学和记忆力方面。

One boy in his clinic

他的诊所中的一个男孩

could distinguish between 18 symphonies before he turned two.

在两岁前就可以辨别18首交响乐。

When his mother put on one of his favorite records,

当他的母亲播放他最喜欢的曲子，

he would correctly declare, "Beethoven!"

他会正确地说出 “贝多芬！”

But Kanner took a dim view of these abilities,

但是Kanner对这些能力并不感冒，

claiming that the kids were just regurgitating things

声称孩子们只是在重复

they'd heard their pompous parents say,

他们爱慕虚荣的父母所说的话，

desperate to earn their approval.

急切地想要赢得父母的赞许。

As a result, autism became a source of shame and stigma for families,

因此，自闭症患儿成了家庭的耻辱，

and two generations of autistic children

整整两代自闭症儿童

were shipped off to institutions for their own good,

都被送到了精神病院接受治疗，

becoming invisible to the world at large.

对整个世界而言， 他们几乎是不存在的。

Amazingly, it wasn't until the 1970s

直到上世纪70年代，

that researchers began to test Kanner's theory that autism was rare.

研究人员才开始质疑Kanner 所谓“自闭症罕见”的理论。

Lorna Wing was a cognitive psychologist in London

Lorna Wing是伦敦一位认知心理学家，

who thought that Kanner's theory of refrigerator parenting

她认为Kanner的“冰箱养育”的理论

were "bloody stupid," as she told me.

“极其愚蠢”， 她这么对我说。

She and her husband John were warm and affectionate people,

她和她的丈夫John是温暖热情的人，

and they had a profoundly autistic daughter named Susie.

而他们有一个极度自闭的女儿Susie。

Lorna and John knew how hard it was to raise a child like Susie

Lorna和John知道 养育Susie这样的孩子困难重重，

without support services,

他们无法获得支持性服务，

special education,

也不能让她接受特殊教育，

and the other resources that are out of reach without a diagnosis.

因为没有自闭症的诊断书， 很多资源都无法获取。

To make the case to the National Health Service

为了向国家医疗保健系统证明，

that more resources were needed for autistic children and their families,

自闭症儿童和他们的家庭 需要更多的资源，

Lorna and her colleague Judith Gould

Lorna和她的同事Judith Gould

decided to do something that should have been done 30 years earlier.

决定去做一些三十年前 就应该被完成的事情，

They undertook a study of autism prevalence in the general population.

他们在普通人群中进行了 自闭症普及性的研究，

They pounded the pavement in a London suburb called Camberwell

他们在伦敦Camberwell郊区四处奔走，

to try to find autistic children in the community.

去寻找社区中的自闭症儿童。

What they saw made clear that Kanner's model was way too narrow,

他们的发现证实了 Kanner的理论模式过于狭隘，

while the reality of autism was much more colorful and diverse.

而自闭症的现实情况却 十分丰富和多元化。

Some kids couldn't talk at all,

有些孩子完全不能说话，

while others waxed on at length about their fascination with astrophysics,

而有些孩子却能对天文物理学， 恐龙或者皇室族谱

dinosaurs or the genealogy of royalty.

这些他们感兴趣的事情侃侃而谈。

In other words, these children didn't fit into nice, neat boxes,

也就是说，这些孩子并非 一个模子里刻出来的，

as Judith put it,

Judith这样形容道，

and they saw lots of them,

他们看到了很多自闭症儿童，

way more than Kanner's monolithic model would have predicted.

远远超出了Kanner单一的 理论模型所能涵盖的范围。

At first, they were at a loss to make sense of their data.

一开始，他们对自己的数据感到茫然。

How had no one noticed these children before?

之前怎么会没人注意到这些孩子呢？

But then Lorna came upon a reference to a paper that had been published

但是Loran提到了在1944年发表的

in German in 1944,

一篇德语论文，

the year after Kanner's paper,

就在Kanner论文发表的一年后，

and then forgotten,

而这篇文章却被人遗忘，

buried with the ashes of a terrible time

被一段可怕时光的余烬埋葬，

that no one wanted to remember or think about.

没人愿意记得或者想起这段时光。

Kanner knew about this competing paper,

Kanner知道这篇观点不同的文章，

but scrupulously avoided mentioning it in his own work.

但是在他自己的文章中完全没有提及。

It had never even been translated into English,

这篇德语论文甚至没有被译成英文，

but luckily, Lorna's husband spoke German,

但幸运的是，Lorna的丈夫懂德语，

and he translated it for her.

他为Lorna翻译了这篇文章。

The paper offered an alternate story of autism.

这篇论文讲述了有关 自闭症的另一个故事。

Its author was a man named Hans Asperger,

故事的作者叫做Hans Asperger，

who ran a combination clinic and residential school

他在1930年代在Vienna地区

in Vienna in the 1930s.

开了一家综合诊所 和一所寄宿学校。

Asperger's ideas about teaching children with learning differences

Asperger对于不同孩子 采取不同教学方法的理念

were progressive even by contemporary standards.

即便在现代也非常先进。

Mornings at his clinic began with exercise classes set to music,

在他的诊所，孩子们早上练习音乐，

and the children put on plays on Sunday afternoons.

星期天下午会进行表演。

Instead of blaming parents for causing autism,

Asperger没有责备父母导致了自闭症，

Asperger framed it as a lifelong, polygenetic disability

而是将自闭症描述为一种 多诱因的终身缺陷。

that requires compassionate forms of support and accommodations

这种缺陷一生都需要人们

over the course of one's whole life.

同情的支持和理解。

Rather than treating the kids in his clinic like patients,

在Asperger的诊所里， 他没有把孩子当做病人，

Asperger called them his little professors,

而是把他们叫做小教授们，

and enlisted their help in developing methods of education

并且在教育方法的建立上 寻求他们的帮助，

that were particularly suited to them.

而这也正是他们所需要的。

Crucially, Asperger viewed autism as a diverse continuum

重要的是，Asperger认为 自闭症是一种多元的疾病，

that spans an astonishing range of giftedness and disability.

包括了无数的不同缺陷和天赋。

He believed that autism and autistic traits are common

他相信自闭症和 自闭症的特征都很常见，

and always have been,

自始至终都如此，

seeing aspects of this continuum in familiar archetypes from pop culture

可以在身边熟悉的原型中 找到这种共性，

like the socially awkward scientist

比如有社交障碍的科学家

and the absent-minded professor.

和心不在焉的教授。

He went so far as to say,

他得出的结论是，

it seems that for success in science and art,

要在科学或者艺术方面获得成功，

a dash of autism is essential.

一定程度的自闭是至关重要的。

Lorna and Judith realized that Kanner had been as wrong about autism being rare

Lorna和Judith意识到Kanner在 “自闭症是罕见的”和“父母导致了自闭症”

as he had been about parents causing it.

这两点上同样都是错误的。

Over the next several years,

之后的若干年里，

they quietly worked with the American Psychiatric Association

他们低调地和美国精神病学会合作，

to broaden the criteria for diagnosis

拓宽了诊断自闭症的标准，

to reflect the diversity of what they called "the autism spectrum."

来反映他们所说的 “自闭症谱图”的多样性。

In the late '80s and early 1990s,

在80年代晚期和90年代初期，

their changes went into effect,

他们提出的改变有了成效，

swapping out Kanner's narrow model

换掉了Kanner狭隘的模型，

for Asperger's broad and inclusive one.

取而代之的是Asperger广泛 又更全面的模型。

These changes weren't happening in a vacuum.

这些改变并不是凭空出现的。

By coincidence, as Lorna and Judith worked behind the scenes

巧合的是，当Lorna和Judith 私下努力进行

to reform the criteria,

评估标准的改革时，

people all over the world were seeing an autistic adult for the first time.

全世界的人们第一次见到了一位 患有自闭症的成年人。

Before "Rain Man" came out in 1988,

在1988年“雨人”（电影）出现之前，

only a tiny, ingrown circle of experts knew what autism looked like,

只有一小部分内部专家了解 自闭症的症状。

but after Dustin Hoffman's unforgettable performance as Raymond Babbitt

但在Dustin Hoffman扮演了 Raymond Babbitt之后，

earned "Rain Man" four Academy Awards,

这场令人难忘的表演给 “雨人”赢得了四项奥斯卡大奖，

pediatricians, psychologists,

全世界的儿科医生，心理学家，

teachers and parents all over the world knew what autism looked like.

老师们和家长们都知道了 自闭症的症状。

Coincidentally, at the same time,

巧合的是，与此同时，

the first easy-to-use clinical tests for diagnosing autism were introduced.

第一个简便的诊断自闭症的 临床测试出现了。

You no longer had to have a connection to that tiny circle of experts

你不再需要认识那一小部分专家

to get your child evaluated.

来给自己的孩子进行诊断。

The combination of "Rain Man,"

“雨人”，

the changes to the criteria, and the introduction of these tests

评估标准的变化， 以及这些测试的组合，

created a network effect,

产生了一种网络效应，

a perfect storm of autism awareness.

一场对自闭症认知的完美风暴。

The number of diagnoses started to soar,

自闭症患者的确诊数目开始激增，

just as Lorna and Judith predicted, indeed hoped, that it would,

就像Lorna和Judith预测 而且希望的那样，

enabling autistic people and their families

自闭症患者和他们的家庭

to finally get the support and services they deserved.

最终会得到他们应得的支持和服务。

Then Andrew Wakefield came along

之后Andrew Wakefield出现了，

to blame the spike in diagnoses on vaccines,

将自闭症归咎于疫苗接种，

a simple, powerful,

这是一个简单，有力，

and seductively believable story

又容易令人信服故事，

that was as wrong as Kanner's theory

这故事和Kanner的

that autism was rare.

自闭症很罕见的理论一样错误。

If the CDC's current estimate,

如果疾控中心目前的

that one in 68 kids in America are on the spectrum, is correct,

“美国每68个孩子中就有一个 患有自闭症”的估计是正确的，

autistics are one of the largest minority groups in the world.

自闭症患者就是世界上 最大的少数群体之一。

In recent years, autistic people have come together on the Internet

在最近几年里， 自闭症患者在网上聚集起来，

to reject the notion that they are puzzles to be solved

来反驳他们是“下一代医学进展

by the next medical breakthrough,

才能解决的谜题”的说法，

coining the term "neurodiversity"

他们创造了一个词，“神经多样性”，

to celebrate the varieties of human cognition.

来赞美人类认知的多元化。

One way to understand neurodiversity

一种理解“神经多样性”的方法

is to think in terms of human operating systems.

是从人类的（大脑）操作系统来思考。

Just because a P.C. is not running Windows doesn't mean that it's broken.

一个电脑不运行Windows系统 并不表示它坏了。

By autistic standards, the normal human brain

从自闭的标准来说， 正常的人类大脑

is easily distractable,

很容易分心，

obsessively social,

喜欢社交，

and suffers from a deficit of attention to detail.

而且对细节不太关注。

To be sure, autistic people have a hard time

诚然，自闭症患者痛苦地生活在

living in a world not built for them.

一个不是为他们创造的世界里。

[Seventy] years later, we're still catching up to Asperger,

（七十）年以后， 我们还在努力追随Asperger的先进想法，

who believed that the "cure" for the most disabling aspects of autism

他认为对于自闭症最糟糕的 那些方面的“治疗方法”

is to be found in understanding teachers,

是让患者有体贴的老师，

accommodating employers,

有包容心的上司，

supportive communities,

支持他们的社会，

and parents who have faith in their children's potential.

以及相信他们孩子潜力的父母。

An autistic [man] named Zosia Zaks once said,

一个患有自闭症的男性 Zosia Zaks曾经说过，

"We need all hands on deck to right the ship of humanity."

“我们需要双手扶着甲板 来扶正人性的船舶。”

As we sail into an uncertain future,

当我们走向未知的未来时，

we need every form of human intelligence on the planet

我们需要地球上 每个拥有智慧的人类，

working together to tackle the challenges that we face as a society.

团结起来，一起努力 解决遇到的问题。

We can't afford to waste a brain.

每个人的智慧都举足轻重。

Thank you.

谢谢。

(Applause)

（掌声）