132 kids in California got the measles

在美國加州有 132 名孩童染上麻疹，

by either visiting Disneyland

有些孩子是去過迪士尼樂園，

or being exposed to someone who'd been there.

也有些小孩是因為接觸到 曾經去過迪士尼的人。

The virus then hopped the Canadian border,

病毒接著跨過了加拿大邊境，

infecting more than 100 children in Quebec.

感染了魁北克地區超過 100 名的兒童。

One of the tragic things about this outbreak

關於本次疫情，最令人難過的是：

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

雖然對抵抗力弱的小孩來說， 麻疹可能會致命，

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

但它也是世界上 最容易預防的流行病之一。

An effective vaccine against it

能有效預防麻疹的疫苗

has been available for more than half a century,

已經發明了超過半個世紀，

but many of the kids involved in the Disneyland outbreak

但是在此次的疫情中，

had not been vaccinated

很多受到感染的孩子 都未曾接種過疫苗，

because their parents were afraid

因為他們的父母

of something allegedly even worse:

害怕孩子會得 傳說中更可怕的疾病：

autism.

「自閉症」。

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

但是，等一下──

about autism and vaccines

有一篇關於自閉症和疫苗爭議的論文，

debunked, retracted,

不是已經被《英國醫學期刊》 揭穿、撤銷，並指為刻意造假？

and branded a deliberate fraud

難道大部分具有科學知識的民眾，

by the British Medical Journal?

還不知道「施打疫苗會導致自閉症」 的理論是一派胡言嗎？

Don't most science-savvy people

我相信你們大部分都知道。

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

但是全球仍有幾百萬個父母，

I think most of you do,

仍然在擔心

but millions of parents worldwide

疫苗會給他們的孩子帶來自閉症。

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

為什麼？

Why?

這就是原因。

Here's why.

這張圖表顯示 疑似自閉症的患者人數

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

隨著時間而不斷增加。

For most of the 20th century,

大半個 20 世紀，

autism was considered an incredibly rare condition.

自閉症一直被認為是罕見的病症。

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

當時只有少數心理學家和小兒科醫生 曾經聽說過自閉症，

figured they would get through their entire careers

他們也認為，在整個職業生涯當中，

without seeing a single case.

可能連一個自閉症個案都不會遇到。

For decades, the prevalence estimates remained stable

最初的數十年， 疑似自閉症患者的人數保持穩定，

at just three or four children in 10,000.

在 10,000 名小孩當中 大約僅有 3 到 4 位。

But then, in the 1990s,

但是到了 1990 年代，

the numbers started to skyrocket.

這個數字開始快速增加。

Fundraising organizations like Autism Speaks

募款組織例如「Autism Speaks」

routinely refer to autism as an epidemic,

經常將自閉症視為一種傳染病，

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

好像你會在迪士尼樂園 被他人傳染一樣。

So what's going on?

所以，這是怎麼回事？

If it isn't vaccines, what is it?

如果自閉症不是疫苗造成的， 那是什麼原因？

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

如果你到亞特蘭大， 詢問疾病控制中心裡面的人：

what's going on,

「到底發生了什麼事？」

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

他們往往會用一些專業術語， 像是「評估標準的放寬」

and "better case finding"

以及「病患篩檢能力的提升」

to explain these rising numbers.

來解釋數字上升的現象。

But that kind of language

但是這樣的說詞，

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

無法舒緩一位遍尋不著兩歲孩子 目光接觸的年輕媽媽心中的恐懼。

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

如果評估的標準需要放寬，

If the diagnostic criteria had to be broadened,

為什麼以前的標準那麼狹隘？

why were they so narrow in the first place?

為什麼自閉症的案例，

Why were cases of autism so hard to find

在 1990 年之前這麼難發現？

before the 1990s?

五年前，我決定試著去尋找 這些問題的答案。

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

我發現，真正的原因

I learned that what happened

不是因為科學發展過程的緩慢、嚴謹，

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

而是因為某些故事的誤導。

than it does with the seductive power of storytelling.

大半個 20 世紀，

For most of the 20th century,

臨床醫生只用一個故事

clinicians told one story

來解釋「自閉症是什麼」 以及「自閉症如何被發現」。

about what autism is and how it was discovered,

但這個故事被證明是錯誤的，

but that story turned out to be wrong,

所以造成的後果是：

and the consequences of it

對全世界的公共衛生體系 帶來災難性的影響。

are having a devastating impact on global public health.

事實上關於自閉症的故事， 有另一個更為正確的版本，

There was a second, more accurate story of autism

卻被遺忘在臨床文獻當中，

which had been lost and forgotten

藏在一個不起眼的角落裡。

in obscure corners of the clinical literature.

這個故事告訴我們自閉症的一切，

This second story tells us everything about how we got here

包括我們如何走到現在這個地步， 以及下一步將何去何從？

and where we need to go next.

第一個故事始於約翰．霍普金斯醫院 的一位兒童精神科醫生

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

名叫李奧．肯納。

named Leo Kanner.

在 1943 年，肯納發表了一篇論文， 內容描述他的 11 名年輕患者：

In 1943, Kanner published a paper

他們彷彿躲在自己的世界當中，

describing 11 young patients who seemed to inhabit private worlds,

完全忽視別人的存在，

ignoring the people around them,

甚至包括自己的父母。

even their own parents.

他們可以連續好幾個小時，

They could amuse themselves for hours

不停地在面前拍手，而且能自得其樂；

by flapping their hands in front of their faces,

但可能因為一點小事而驚慌失措，

but they were panicked by little things

例如在他們不知情的情況下，

like their favorite toy being moved from its usual place

突然把喜愛的玩具從熟悉的地方移走。

without their knowledge.

根據這些來就診的病人，

Based on the patients who were brought to his clinic,

肯納推測自閉症是非常罕見的。

Kanner speculated that autism is very rare.

在 1950 年代， 身為這個研究主題的權威，

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

肯納宣稱他所見過 真正符合症狀的個案不到 150 位，

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

裡面甚至包括 遠從南非轉診而來的病患。

while fielding referrals from as far away as South Africa.

這個結果並不意外，

That's actually not surprising,

因為肯納對於自閉症的評估項目，

because Kanner's criteria for diagnosing autism

完全是令人難以置信的主觀判斷。

were incredibly selective.

例如，他不鼓勵具有癲癇症狀的小孩 進行自閉症評估，

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

但現在我們知道， 癲癇是自閉症患者常見的症狀。

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

他曾經大話宣稱：

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

那些由其他醫生轉介而來的病患，

referred to his office as autistic by other clinicians

十分之九都不需要進行自閉症的評估。

without giving them an autism diagnosis.

肯納是個聰明的傢伙，

Kanner was a smart guy,

但是他的許多理論都沒有發展出結果。

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

他將自閉症歸類為一種幼兒精神疾病，

He classified autism as a form of infantile psychosis

而且是由冷漠、無情的父母所造成的。

caused by cold and unaffectionate parents.

他形容，這些孩子就像是

These children, he said,

被整齊地冰凍在 無法解凍的冰箱之中。

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

然而，肯納同時也注意到，

At the same time, however,

有一些年輕患者

Kanner noticed that some of his young patients

在某些領域具有特殊才能，

had special abilities that clustered in certain areas

例如音樂、數學和記憶等方面。

like music, math and memory.

他的病患當中，有一位男孩

One boy in his clinic

在兩歲之前就能分辨出 18 首交響曲。

could distinguish between 18 symphonies before he turned two.

當他的母親播放他最喜歡的唱片之一時，

When his mother put on one of his favorite records,

他會正確地判斷並說出：「貝多芬！」

he would correctly declare, "Beethoven!"

但是肯納對這些能力毫不關心，

But Kanner took a dim view of these abilities,

他宣稱孩子們只是在重複

claiming that the kids were just regurgitating things

從那些愛炫耀的父母身上聽來的話語，

they'd heard their pompous parents say,

目的只是為了贏得他們的認可。

desperate to earn their approval.

結果，自閉症變成了 家族中的恥辱和傷痛，

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

有兩個世代的自閉症兒童

and two generations of autistic children

被送到醫療機構裡， 表面上是為了他們好，

were shipped off to institutions for their own good,

實際上卻是與世隔絕。

becoming invisible to the world at large.

令人驚訝地，一直到 1970 年代，

Amazingly, it wasn't until the 1970s

才有研究者開始檢驗 肯納「自閉症很罕見」的理論。

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

洛娜．溫是英國倫敦的認知心理學家，

Lorna Wing was a cognitive psychologist in London

她告訴我：肯納的「冰箱養育理論」

who thought that Kanner's theory of refrigerator parenting

實在是愚蠢透頂。

were "bloody stupid," as she told me.

洛娜和丈夫約翰 都是溫暖和深情的人，

She and her husband John were warm and affectionate people,

而他們有一個 重度自閉症的女兒，名叫蘇西。

and they had a profoundly autistic daughter named Susie.

洛娜和約翰知道， 如果沒有通過自閉症評估，

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

在得不到支援服務、

without support services,

特殊教育以及其他資源的情況下，

special education,

要照顧像蘇西一樣的孩子有多麼困難。

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

為了說服英國的國民保健署，

To make the case to the National Health Service

讓他們瞭解自閉症兒童及家庭 需要更多的資源，

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

洛娜和她的同事茱迪絲．高爾德

Lorna and her colleague Judith Gould

決定去做一件 30 年前就應該完成的事。

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

他們著手進行一項 「自閉症罹患比率」的研究。

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

他們在倫敦南部市郊的 坎伯威爾地區四處奔走，

They pounded the pavement in a London suburb called Camberwell

試著找出當地的自閉症兒童。

to try to find autistic children in the community.

他們看到的結果清楚地顯示： 肯納的模型過於偏狹。

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

事實上，自閉症的樣貌 是更為豐富而多元的。

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

他們發現有些孩子完全不說話，

Some kids couldn't talk at all,

但另一些孩子的言語充分表現出 對於天文物理學、

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

恐龍或皇室族譜等主題的喜好。

dinosaurs or the genealogy of royalty.

就如同茱迪絲所說的，

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

這些孩子並未被侷限在 「漂亮、整齊的盒子」當中，

as Judith put it,

他們看到各種不同的自閉症類型，

and they saw lots of them,

遠遠超出肯納的單一模型 所能預測的結果。

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

一開始，他們對於蒐集到的資料 感到困惑不解。

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

為什麼從前沒有人注意到這些孩子？

How had no one noticed these children before?

但後來，洛娜偶然發現了

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

一篇 1944 年在德國所發表的論文。

in German in 1944,

那剛好是在肯納發表論文之後的隔年，

the year after Kanner's paper,

但是這篇論文被遺忘了，

and then forgotten,

被埋藏在可怕時光的塵埃當中，

buried with the ashes of a terrible time

沒有人想憶起。

that no one wanted to remember or think about.

肯納其實知道這一篇 與他立場相反的論文，

Kanner knew about this competing paper,

但是他在研究過程中絕口不提。

but scrupulously avoided mentioning it in his own work.

這篇論文甚至從來沒有被翻譯成英文，

It had never even been translated into English,

但幸運的是，洛娜的丈夫懂德語，

but luckily, Lorna's husband spoke German,

所以他能為洛娜翻譯。

and he translated it for her.

那篇論文敘述了 另一個關於自閉症的故事。

The paper offered an alternate story of autism.

論文的作者是一位 名叫漢斯．亞斯伯格的醫生，

Its author was a man named Hans Asperger,

1930 年代，他在維也納開設診所，

who ran a combination clinic and residential school

並且兼具寄宿性學校的功能。

in Vienna in the 1930s.

當時亞斯伯格根據兒童的學習差異 提供不同的教導方式，

Asperger's ideas about teaching children with learning differences

以現代的標準來看仍然是重大的革新。

were progressive even by contemporary standards.

他的診所在每天早晨安排了音樂律動課程，

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

星期天下午則是讓孩子們進行表演。

and the children put on plays on Sunday afternoons.

亞斯伯格並未將自閉症歸咎於父母，

Instead of blaming parents for causing autism,

而是將它視為一種終身、 具有多種成因的疾病，

Asperger framed it as a lifelong, polygenetic disability

需要給予患者一輩子的

that requires compassionate forms of support and accommodations

關懷、支持與體諒。

over the course of one's whole life.

亞斯伯格並不把診所裡的孩子視為病人，

Rather than treating the kids in his clinic like patients,

而是稱呼他們為「小教授」，

Asperger called them his little professors,

並在徵得他們的協助之下，

and enlisted their help in developing methods of education

為孩子們設計適合的教育方式。

that were particularly suited to them.

最重要的是，亞斯伯格將自閉症 視為一種多元的連續光譜，

Crucially, Asperger viewed autism as a diverse continuum

涵蓋的範圍極為廣泛， 無論天才或是智能障礙都包括在內。

that spans an astonishing range of giftedness and disability.

他認為，「自閉症」 和「自閉特質」是很普遍的，

He believed that autism and autistic traits are common

而且存在已久，

and always have been,

用一般人熟悉的方式， 來形容自閉症光譜的特質，

seeing aspects of this continuum in familiar archetypes from pop culture

就像是不善社交的科學家，

like the socially awkward scientist

或者是心不在焉的學者。

and the absent-minded professor.

亞斯伯格更進一步認為，

He went so far as to say,

人類在科學和藝術方面的成就，

it seems that for success in science and art,

自閉症患者都發揮了重要的影響。

a dash of autism is essential.

洛娜和茱迪絲發現， 肯納提出的「自閉症很罕見」

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

以及「自閉症是父母所造成」 都是錯誤的觀點。

as he had been about parents causing it.

在接下來的幾年裡，

Over the next several years,

他們悄悄地與美國精神醫學學會合作，

they quietly worked with the American Psychiatric Association

放寬評估項目，

to broaden the criteria for diagnosis

以反映出「自閉症光譜」的多元性質。

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

在 80 年代末和 90 年代初，

In the late '80s and early 1990s,

評估項目的變更生效，

their changes went into effect,

原本肯納的狹隘模型被取代，

swapping out Kanner's narrow model

改採亞斯伯格更具包容性的廣泛標準。

for Asperger's broad and inclusive one.

這些改變並不是憑空而來的。

These changes weren't happening in a vacuum.

巧合的是，洛娜和茱迪絲隱身於幕後，

By coincidence, as Lorna and Judith worked behind the scenes

進行評估標準的改革時，

to reform the criteria,

全世界的民眾也首次見到 自閉症成人患者的樣貌。

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

在 1988 年的電影《雨人》上映之前，

Before "Rain Man" came out in 1988,

只有一小群專家知道什麼是自閉症。

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

但是由於達斯汀．霍夫曼飾演的主角 雷蒙．巴比特，實在令人難忘，

but after Dustin Hoffman's unforgettable performance as Raymond Babbitt

並且贏得了四項奧斯卡大獎，

earned "Rain Man" four Academy Awards,

全球無數的小兒科醫生、心理學家、

pediatricians, psychologists,

教師和家長， 才開始對自閉症有所瞭解。

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

更巧合的是，就在同一時間，

Coincidentally, at the same time,

出現了第一個方便使用的 自閉症臨床診斷標準。

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

你不再只能依靠一小群的專家，

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

就能對您的孩子進行評估。

to get your child evaluated.

電影《雨人》的上映、

The combination of "Rain Man,"

評估標準的改革， 以及診斷方法的引進，

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

共同形成了網路效應，

created a network effect,

對於自閉症的認知， 像風暴一般席捲全球。

a perfect storm of autism awareness.

自閉症的確診人數開始大量增加，

The number of diagnoses started to soar,

就像洛娜和茱迪絲 所預測、期望的那樣，

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

這也讓自閉症患者和他們的家庭，

enabling autistic people and their families

終於可以得到應有的支援和服務。

to finally get the support and services they deserved.

接下來是安德魯．韋克菲爾德，

Then Andrew Wakefield came along

他把自閉症的起因歸咎於疫苗，

to blame the spike in diagnoses on vaccines,

但是這個簡單有力、容易相信的故事，

a simple, powerful,

就像肯納的理論「自閉症很罕見」一樣，

and seductively believable story

完全錯誤。

that was as wrong as Kanner's theory

根據美國疾病控制與預防中心的估計，

that autism was rare.

在美國每 68 位兒童， 就有 1 位在自閉症光譜上。

If the CDC's current estimate,

如果這個估計正確， 自閉症就是全球最大的弱勢族群。

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

近年來，自閉症患者在網路上聚集，

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

他們反對外界將他們視為

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

需要未來醫學科技解決的問題，

to reject the notion that they are puzzles to be solved

他們創造了「神經多元性」一詞，

by the next medical breakthrough,

來讚揚人類認知發展的多元特質。

coining the term "neurodiversity"

要瞭解「神經多元性」這個名詞，

to celebrate the varieties of human cognition.

可以把它想像成人類的作業系統。

One way to understand neurodiversity

就像是一部沒有採用 Windows 的電腦，

is to think in terms of human operating systems.

並不代表這部電腦壞了。

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

如果以自閉症患者的大腦作為標準，

By autistic standards, the normal human brain

正常人的大腦就顯得 容易被擾亂、分心，

is easily distractable,

過度沉迷於社交活動，

obsessively social,

以及不夠重視細節。

and suffers from a deficit of attention to detail.

可以肯定的是，自閉症患者生活在這個

To be sure, autistic people have a hard time

並不屬於他們的世界中，其實很辛苦。

living in a world not built for them.

70 年後的今天， 我們仍追隨著亞斯伯格的腳步，

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

他認為，對於自閉症患者 最好的「解藥」，

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