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  • 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,

  • 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

    需要能理解自閉症的教師、

  • is to be found in understanding teachers,

    具有包容力的雇主、

  • accommodating employers,

    能提供支持的社群,

  • supportive communities,

    以及相信孩子具有潛能的家長。

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

    一位自閉症患者扎西亞.扎克斯曾說:

  • An autistic woman named Zosia Zaks once said,

    「我們需要大家攜手合作, 帶領人類朝著正確的方向前進。」

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

    面對不確定的未來,

  • As we sail into an uncertain future,

    我們需要這個世界上各種形式的智慧,