Steve Silberman: The forgotten history of autism

譯者: 庭芝 梁 審譯者: Kuan-Yi Li

Just after Christmas last year,

去年耶誕節剛過不久，

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，

很多受到感染的孩子 都未曾接種過疫苗，

had not been vaccinated

because their parents were afraid

因為他們的父母

害怕孩子會得 傳說中更可怕的疾病：

of something allegedly even worse:

autism.

「自閉症」。

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

但是，等一下──

有一篇關於自閉症和疫苗爭議的論文，

about autism and vaccines

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

by the British Medical Journal?

Don't most science-savvy people

難道大部分具有科學知識的民眾，

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

還不知道「施打疫苗會導致自閉症」 的理論是一派胡言嗎？

I think most of you do,

我相信你們大部分都知道。

but millions of parents worldwide

但是全球仍有幾百萬個父母，

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

仍然在擔心

疫苗會給他們的孩子帶來自閉症。

Why?

為什麼？

Here's why.

這就是原因。

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

這張圖表顯示 疑似自閉症的患者人數

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：

「到底發生了什麼事？」

what's going on,

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」

以及「病患篩檢能力的提升」

and "better case finding"

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.

If the diagnostic criteria had to be broadened,

如果評估的標準需要放寬，

why were they so narrow in the first place?

為什麼以前的標準那麼狹隘？

Why were cases of autism so hard to find

為什麼自閉症的案例，

before the 1990s?

在 1990 年之前這麼難發現？

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

五年前，我決定試著去尋找 這些問題的答案。

I learned that what happened

我發現，真正的原因

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

不是因為科學發展過程的緩慢、嚴謹，

than it does with the seductive power of storytelling.

而是因為某些故事的誤導。

For most of the 20th century,

大半個 20 世紀，

clinicians told one story

臨床醫生只用一個故事

about what autism is and how it was discovered,

來解釋「自閉症是什麼」 以及「自閉症如何被發現」。

but that story turned out to be wrong,

但這個故事被證明是錯誤的，

and the consequences of it

所以造成的後果是：

are having a devastating impact on global public health.

對全世界的公共衛生體系 帶來災難性的影響。

There was a second, more accurate story of autism

事實上關於自閉症的故事， 有另一個更為正確的版本，

which had been lost and forgotten

卻被遺忘在臨床文獻當中，

in obscure corners of the clinical literature.

藏在一個不起眼的角落裡。

This second story tells us everything about how we got here

這個故事告訴我們自閉症的一切，

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.

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

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

named Leo Kanner.

名叫李奧．肯納。

In 1943, Kanner published a paper

在 1943 年，肯納發表了一篇論文， 內容描述他的 11 名年輕患者：

describing 11 young patients who seemed to inhabit private worlds,

他們彷彿躲在自己的世界當中，

ignoring the people around them,

完全忽視別人的存在，

even their own parents.

甚至包括自己的父母。

They could amuse themselves for hours

他們可以連續好幾個小時，

by flapping their hands in front of their faces,

不停地在面前拍手，而且能自得其樂；

but they were panicked by little things

但可能因為一點小事而驚慌失措，

like their favorite toy being moved from its usual place

例如在他們不知情的情況下，

突然把喜愛的玩具從熟悉的地方移走。

without their knowledge.

Based on the patients who were brought to his clinic,

根據這些來就診的病人，

Kanner speculated that autism is very rare.

肯納推測自閉症是非常罕見的。

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

在 1950 年代， 身為這個研究主題的權威，

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

肯納宣稱他所見過 真正符合症狀的個案不到 150 位，

while fielding referrals from as far away as South Africa.

裡面甚至包括 遠從南非轉診而來的病患。

That's actually not surprising,

這個結果並不意外，

because Kanner's criteria for diagnosing autism

因為肯納對於自閉症的評估項目，

完全是令人難以置信的主觀判斷。

were incredibly selective.

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

例如，他不鼓勵具有癲癇症狀的小孩 進行自閉症評估，

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

但現在我們知道， 癲癇是自閉症患者常見的症狀。

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

他曾經大話宣稱：

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.

Kanner was a smart guy,

肯納是個聰明的傢伙，

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

但是他的許多理論都沒有發展出結果。

He classified autism as a form of infantile psychosis

他將自閉症歸類為一種幼兒精神疾病，

caused by cold and unaffectionate parents.

而且是由冷漠、無情的父母所造成的。

These children, he said,

他形容，這些孩子就像是

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

被整齊地冰凍在 無法解凍的冰箱之中。

At the same time, however,

然而，肯納同時也注意到，

Kanner noticed that some of his young patients

有一些年輕患者

had special abilities that clustered in certain areas

在某些領域具有特殊才能，

like music, math and memory.

例如音樂、數學和記憶等方面。

One boy in his clinic

他的病患當中，有一位男孩

could distinguish between 18 symphonies before he turned two.

在兩歲之前就能分辨出 18 首交響曲。

When his mother put on one of his favorite records,

當他的母親播放他最喜歡的唱片之一時，

he would correctly declare, "Beethoven!"

他會正確地判斷並說出：「貝多芬！」

But Kanner took a dim view of these abilities,

但是肯納對這些能力毫不關心，

claiming that the kids were just regurgitating things

他宣稱孩子們只是在重複

they'd heard their pompous parents say,

從那些愛炫耀的父母身上聽來的話語，

desperate to earn their approval.

目的只是為了贏得他們的認可。

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

結果，自閉症變成了 家族中的恥辱和傷痛，

and two generations of autistic children

有兩個世代的自閉症兒童

were shipped off to institutions for their own good,

被送到醫療機構裡， 表面上是為了他們好，

becoming invisible to the world at large.

實際上卻是與世隔絕。

Amazingly, it wasn't until the 1970s

令人驚訝地，一直到 1970 年代，

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

才有研究者開始檢驗 肯納「自閉症很罕見」的理論。

Lorna Wing was a cognitive psychologist in London

洛娜．溫是英國倫敦的認知心理學家，

who thought that Kanner's theory of refrigerator parenting

她告訴我：肯納的「冰箱養育理論」

were "bloody stupid," as she told me.

實在是愚蠢透頂。

She and her husband John were warm and affectionate people,

洛娜和丈夫約翰 都是溫暖和深情的人，

and they had a profoundly autistic daughter named Susie.

而他們有一個 重度自閉症的女兒，名叫蘇西。

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

洛娜和約翰知道， 如果沒有通過自閉症評估，

without support services,

在得不到支援服務、

special education,

特殊教育以及其他資源的情況下，

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

要照顧像蘇西一樣的孩子有多麼困難。

To make the case to the National Health Service

為了說服英國的國民保健署，

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

讓他們瞭解自閉症兒童及家庭 需要更多的資源，

Lorna and her colleague Judith Gould

洛娜和她的同事茱迪絲．高爾德

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

決定去做一件 30 年前就應該完成的事。

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

他們著手進行一項 「自閉症罹患比率」的研究。

They pounded the pavement in a London suburb called Camberwell

他們在倫敦南部市郊的 坎伯威爾地區四處奔走，

to try to find autistic children in the community.

試著找出當地的自閉症兒童。

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

他們看到的結果清楚地顯示： 肯納的模型過於偏狹。

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

事實上，自閉症的樣貌 是更為豐富而多元的。

Some kids couldn't talk at all,

他們發現有些孩子完全不說話，

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

但另一些孩子的言語充分表現出 對於天文物理學、

dinosaurs or the genealogy of royalty.

恐龍或皇室族譜等主題的喜好。

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

就如同茱迪絲所說的，

這些孩子並未被侷限在 「漂亮、整齊的盒子」當中，

as Judith put it,

and they saw lots of them,

他們看到各種不同的自閉症類型，

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

遠遠超出肯納的單一模型 所能預測的結果。

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

一開始，他們對於蒐集到的資料 感到困惑不解。

How had no one noticed these children before?

為什麼從前沒有人注意到這些孩子？

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

但後來，洛娜偶然發現了

一篇 1944 年在德國所發表的論文。

in German in 1944,

the year after Kanner's paper,

那剛好是在肯納發表論文之後的隔年，

and then forgotten,

但是這篇論文被遺忘了，

buried with the ashes of a terrible time

被埋藏在可怕時光的塵埃當中，

that no one wanted to remember or think about.

沒有人想憶起。

Kanner knew about this competing paper,

肯納其實知道這一篇 與他立場相反的論文，

but scrupulously avoided mentioning it in his own work.

但是他在研究過程中絕口不提。

It had never even been translated into English,

這篇論文甚至從來沒有被翻譯成英文，

but luckily, Lorna's husband spoke German,

但幸運的是，洛娜的丈夫懂德語，

and he translated it for her.

所以他能為洛娜翻譯。

The paper offered an alternate story of autism.

那篇論文敘述了 另一個關於自閉症的故事。

Its author was a man named Hans Asperger,

論文的作者是一位 名叫漢斯．亞斯伯格的醫生，

who ran a combination clinic and residential school

1930 年代，他在維也納開設診所，

in Vienna in the 1930s.

並且兼具寄宿性學校的功能。

Asperger's ideas about teaching children with learning differences

當時亞斯伯格根據兒童的學習差異 提供不同的教導方式，

were progressive even by contemporary standards.

以現代的標準來看仍然是重大的革新。

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

他的診所在每天早晨安排了音樂律動課程，

and the children put on plays on Sunday afternoons.

星期天下午則是讓孩子們進行表演。

Instead of blaming parents for causing autism,

亞斯伯格並未將自閉症歸咎於父母，

Asperger framed it as a lifelong, polygenetic disability

而是將它視為一種終身、 具有多種成因的疾病，

that requires compassionate forms of support and accommodations

需要給予患者一輩子的

關懷、支持與體諒。

over the course of one's whole life.

Rather than treating the kids in his clinic like patients,

亞斯伯格並不把診所裡的孩子視為病人，

Asperger called them his little professors,

而是稱呼他們為「小教授」，

and enlisted their help in developing methods of education

並在徵得他們的協助之下，

為孩子們設計適合的教育方式。

that were particularly suited to them.

Crucially, Asperger viewed autism as a diverse continuum

最重要的是，亞斯伯格將自閉症 視為一種多元的連續光譜，

that spans an astonishing range of giftedness and disability.

涵蓋的範圍極為廣泛， 無論天才或是智能障礙都包括在內。

He believed that autism and autistic traits are common

他認為，「自閉症」 和「自閉特質」是很普遍的，

and always have been,

而且存在已久，

seeing aspects of this continuum in familiar archetypes from pop culture

用一般人熟悉的方式， 來形容自閉症光譜的特質，

like the socially awkward scientist

就像是不善社交的科學家，

and the absent-minded professor.

或者是心不在焉的學者。

He went so far as to say,

亞斯伯格更進一步認為，

it seems that for success in science and art,

人類在科學和藝術方面的成就，

a dash of autism is essential.

自閉症患者都發揮了重要的影響。

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

洛娜和茱迪絲發現， 肯納提出的「自閉症很罕見」

as he had been about parents causing it.

以及「自閉症是父母所造成」 都是錯誤的觀點。

Over the next several years,

在接下來的幾年裡，

they quietly worked with the American Psychiatric Association

他們悄悄地與美國精神醫學學會合作，

to broaden the criteria for diagnosis

放寬評估項目，

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

以反映出「自閉症光譜」的多元性質。

In the late '80s and early 1990s,

在 80 年代末和 90 年代初，

their changes went into effect,

評估項目的變更生效，

swapping out Kanner's narrow model

原本肯納的狹隘模型被取代，

for Asperger's broad and inclusive one.

改採亞斯伯格更具包容性的廣泛標準。

These changes weren't happening in a vacuum.

這些改變並不是憑空而來的。

By coincidence, as Lorna and Judith worked behind the scenes

巧合的是，洛娜和茱迪絲隱身於幕後，

to reform the criteria,

進行評估標準的改革時，

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

全世界的民眾也首次見到 自閉症成人患者的樣貌。

Before "Rain Man" came out in 1988,

在 1988 年的電影《雨人》上映之前，

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

只有一小群專家知道什麼是自閉症。

but after Dustin Hoffman's unforgettable performance as Raymond Babbitt

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，

earned "Rain Man" four Academy Awards,

並且贏得了四項奧斯卡大獎，

pediatricians, psychologists,

全球無數的小兒科醫生、心理學家、

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

教師和家長， 才開始對自閉症有所瞭解。

Coincidentally, at the same time,

更巧合的是，就在同一時間，

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

出現了第一個方便使用的 自閉症臨床診斷標準。

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

你不再只能依靠一小群的專家，

to get your child evaluated.

就能對您的孩子進行評估。

The combination of "Rain Man,"

電影《雨人》的上映、

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

評估標準的改革， 以及診斷方法的引進，

created a network effect,

共同形成了網路效應，

a perfect storm of autism awareness.

對於自閉症的認知， 像風暴一般席捲全球。

The number of diagnoses started to soar,

自閉症的確診人數開始大量增加，

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

就像洛娜和茱迪絲 所預測、期望的那樣，

enabling autistic people and their families

這也讓自閉症患者和他們的家庭，

to finally get the support and services they deserved.

終於可以得到應有的支援和服務。

Then Andrew Wakefield came along

接下來是安德魯．韋克菲爾德，

to blame the spike in diagnoses on vaccines,

他把自閉症的起因歸咎於疫苗，

a simple, powerful,

但是這個簡單有力、容易相信的故事，

and seductively believable story

that was as wrong as Kanner's theory

就像肯納的理論「自閉症很罕見」一樣，

that autism was rare.

完全錯誤。

If the CDC's current estimate,

根據美國疾病控制與預防中心的估計，

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

在美國每 68 位兒童， 就有 1 位在自閉症光譜上。

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

如果這個估計正確， 自閉症就是全球最大的弱勢族群。

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

近年來，自閉症患者在網路上聚集，

to reject the notion that they are puzzles to be solved

他們反對外界將他們視為

需要未來醫學科技解決的問題，

by the next medical breakthrough,

coining the term "neurodiversity"

他們創造了「神經多元性」一詞，

to celebrate the varieties of human cognition.

來讚揚人類認知發展的多元特質。

One way to understand neurodiversity

要瞭解「神經多元性」這個名詞，

is to think in terms of human operating systems.

可以把它想像成人類的作業系統。

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

就像是一部沒有採用 Windows 的電腦，

並不代表這部電腦壞了。

By autistic standards, the normal human brain

如果以自閉症患者的大腦作為標準，

正常人的大腦就顯得 容易被擾亂、分心，

is easily distractable,

obsessively social,

過度沉迷於社交活動，

and suffers from a deficit of attention to detail.

以及不夠重視細節。

To be sure, autistic people have a hard time

可以肯定的是，自閉症患者生活在這個

living in a world not built for them.

並不屬於他們的世界中，其實很辛苦。

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

70 年後的今天， 我們仍追隨著亞斯伯格的腳步，

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

他認為，對於自閉症患者 最好的「解藥」，

is to be found in understanding teachers,

需要能理解自閉症的教師、

accommodating employers,

具有包容力的雇主、

supportive communities,

能提供支持的社群，

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

以及相信孩子具有潛能的家長。

An autistic [man] named Zosia Zaks once said,

一位自閉症患者扎西亞．扎克斯曾說：

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

「我們需要大家攜手合作， 帶領人類朝著正確的方向前進。」

As we sail into an uncertain future,

面對不確定的未來，

we need every form of human intelligence on the planet

我們需要這個世界上各種形式的智慧，

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

共同致力於解決社會所面臨的挑戰。

We can't afford to waste a brain.

我們不能再浪費任何一個人的頭腦。

Thank you.

謝謝！

（掌聲）

(Applause)