TED2015
Steve Silberman: The forgotten history of autism
史蒂夫．希伯曼: 關於「自閉症」被遺忘的歷史
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在幾十年前，只有少數的小兒科醫生曾經聽過自閉症。在 1975 年，估計每 5,000 名兒童之中才有 1 位患有自閉症。但是到了現在，估計每 68 名兒童就有 1 位落在自閉症光譜上。是什麼原因造成自閉症患者的急速增加？史蒂夫．希伯曼認為，引起自閉症意識的「完美風暴」起源於：有兩位醫生提供了更讓人接受的觀點，一個讓人意想不到的流行文化出現，以及一個新的診斷方式問世。但要真正理解自閉症，我們必須追溯到一位名為漢斯．亞斯伯格的奧地利醫師，他在 1944 年發表了一篇開創性的論文。但也因為這篇論文被埋沒在歷史之中，直到現在自閉症仍然遭受許多誤解。（本演講是 TED2015 會議上，由 Pop-Up 雜誌所策劃的其中一場。聯絡方式請洽 popupmagazine.com 或 Twitter 上的 @popupmag）
Steve Silberman - Writer and editor
Steve Silberman is a writer and contributing editor for Wired who covers science and society. His newest book explores neurodiversity and the link between autism and genius. Full bio
Steve Silberman is a writer and contributing editor for Wired who covers science and society. His newest book explores neurodiversity and the link between autism and genius. Full bio
Double-click the English transcript below to play the video.
00:12
Just after Christmas last year,
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去年耶誕節剛過不久，
00:15
132 kids in California got the measles
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在美國加州有 132 名孩童染上麻疹，
有些孩子是去過迪士尼樂園，
00:19
by either visiting Disneyland
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00:21
or being exposed to someone
who'd been there.
who'd been there.
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也有些小孩是因為接觸到
曾經去過迪士尼的人。
曾經去過迪士尼的人。
00:24
The virus then hopped the Canadian border,
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病毒接著跨過了加拿大邊境，
00:27
infecting more than
100 children in Quebec.
100 children in Quebec.
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感染了魁北克地區超過 100 名的兒童。
00:30
One of the tragic things
about this outbreak
about this outbreak
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關於本次疫情，最令人難過的是：
00:33
is that measles, which can be fatal
to a child with a weakened immune system,
to a child with a weakened immune system,
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雖然對抵抗力弱的小孩來說，
麻疹可能會致命，
麻疹可能會致命，
但它也是世界上
最容易預防的流行病之一。
最容易預防的流行病之一。
00:39
is one of the most easily
preventable diseases in the world.
preventable diseases in the world.
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00:43
An effective vaccine against it
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能有效預防麻疹的疫苗
00:45
has been available for more
than half a century,
than half a century,
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已經發明了超過半個世紀，
00:48
but many of the kids involved
in the Disneyland outbreak
in the Disneyland outbreak
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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，
都未曾接種過疫苗，
00:51
had not been vaccinated
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00:53
because their parents were afraid
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因為他們的父母
害怕孩子會得
傳說中更可怕的疾病：
傳說中更可怕的疾病：
00:56
of something allegedly even worse:
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00:59
autism.
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「自閉症」。
01:00
But wait -- wasn't the paper
that sparked the controversy
that sparked the controversy
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但是，等一下──
有一篇關於自閉症和疫苗爭議的論文，
01:04
about autism and vaccines
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01:06
debunked, retracted,
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不是已經被《英國醫學期刊》
揭穿、撤銷，並指為刻意造假？
揭穿、撤銷，並指為刻意造假？
01:08
and branded a deliberate fraud
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01:11
by the British Medical Journal?
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01:13
Don't most science-savvy people
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難道大部分具有科學知識的民眾，
01:15
know that the theory
that vaccines cause autism is B.S.?
that vaccines cause autism is B.S.?
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還不知道「施打疫苗會導致自閉症」
的理論是一派胡言嗎？
的理論是一派胡言嗎？
01:19
I think most of you do,
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我相信你們大部分都知道。
01:21
but millions of parents worldwide
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但是全球仍有幾百萬個父母，
01:23
continue to fear that vaccines
put their kids at risk for autism.
put their kids at risk for autism.
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仍然在擔心
疫苗會給他們的孩子帶來自閉症。
01:28
Why?
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為什麼？
這就是原因。
01:30
Here's why.
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01:32
This is a graph of autism
prevalence estimates rising over time.
prevalence estimates rising over time.
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這張圖表顯示
疑似自閉症的患者人數
疑似自閉症的患者人數
隨著時間而不斷增加。
01:37
For most of the 20th century,
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大半個 20 世紀，
01:39
autism was considered
an incredibly rare condition.
an incredibly rare condition.
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自閉症一直被認為是罕見的病症。
01:43
The few psychologists and pediatricians
who'd even heard of it
who'd even heard of it
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當時只有少數心理學家和小兒科醫生
曾經聽說過自閉症，
曾經聽說過自閉症，
01:46
figured they would get through
their entire careers
their entire careers
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他們也認為，在整個職業生涯當中，
01:49
without seeing a single case.
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可能連一個自閉症個案都不會遇到。
01:52
For decades, the prevalence estimates
remained stable
remained stable
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最初的數十年，
疑似自閉症患者的人數保持穩定，
疑似自閉症患者的人數保持穩定，
01:55
at just three or four children in 10,000.
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在 10,000 名小孩當中
大約僅有 3 到 4 位。
大約僅有 3 到 4 位。
01:58
But then, in the 1990s,
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但是到了 1990 年代，
02:00
the numbers started to skyrocket.
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這個數字開始快速增加。
02:03
Fundraising organizations
like Autism Speaks
like Autism Speaks
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募款組織例如「Autism Speaks」
02:06
routinely refer to autism as an epidemic,
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經常將自閉症視為一種傳染病，
02:09
as if you could catch it
from another kid at Disneyland.
from another kid at Disneyland.
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好像你會在迪士尼樂園
被他人傳染一樣。
被他人傳染一樣。
02:13
So what's going on?
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所以，這是怎麼回事？
02:14
If it isn't vaccines, what is it?
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如果自閉症不是疫苗造成的，
那是什麼原因？
那是什麼原因？
02:18
If you ask the folks down at
the Centers for Disease Control in Atlanta
the Centers for Disease Control in Atlanta
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如果你到亞特蘭大，
詢問疾病控制中心裡面的人：
詢問疾病控制中心裡面的人：
「到底發生了什麼事？」
02:22
what's going on,
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02:23
they tend to rely on phrases like
"broadened diagnostic criteria"
"broadened diagnostic criteria"
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他們往往會用一些專業術語，
像是「評估標準的放寬」
像是「評估標準的放寬」
以及「病患篩檢能力的提升」
02:28
and "better case finding"
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02:30
to explain these rising numbers.
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來解釋數字上升的現象。
02:32
But that kind of language
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但是這樣的說詞，
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。
目光接觸的年輕媽媽心中的恐懼。
02:34
doesn't do much to allay
the fears of a young mother
the fears of a young mother
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02:37
who is searching her
two-year-old's face for eye contact.
two-year-old's face for eye contact.
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02:42
If the diagnostic criteria
had to be broadened,
had to be broadened,
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如果評估的標準需要放寬，
02:45
why were they so narrow
in the first place?
in the first place?
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為什麼以前的標準那麼狹隘？
02:48
Why were cases of autism
so hard to find
so hard to find
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為什麼自閉症的案例，
02:51
before the 1990s?
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在 1990 年之前這麼難發現？
02:53
Five years ago, I decided to try
to uncover the answers to these questions.
to uncover the answers to these questions.
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五年前，我決定試著去尋找
這些問題的答案。
這些問題的答案。
02:59
I learned that what happened
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我發現，真正的原因
03:01
has less to do with the slow and cautious
progress of science
progress of science
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不是因為科學發展過程的緩慢、嚴謹，
03:05
than it does with the seductive
power of storytelling.
power of storytelling.
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而是因為某些故事的誤導。
03:08
For most of the 20th century,
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大半個 20 世紀，
03:10
clinicians told one story
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臨床醫生只用一個故事
03:13
about what autism is
and how it was discovered,
and how it was discovered,
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來解釋「自閉症是什麼」
以及「自閉症如何被發現」。
以及「自閉症如何被發現」。
03:16
but that story turned out to be wrong,
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但這個故事被證明是錯誤的，
03:19
and the consequences of it
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所以造成的後果是：
03:21
are having a devastating impact
on global public health.
on global public health.
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對全世界的公共衛生體系
帶來災難性的影響。
帶來災難性的影響。
事實上關於自閉症的故事，
有另一個更為正確的版本，
有另一個更為正確的版本，
03:25
There was a second,
more accurate story of autism
more accurate story of autism
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03:28
which had been lost and forgotten
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卻被遺忘在臨床文獻當中，
03:31
in obscure corners
of the clinical literature.
of the clinical literature.
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藏在一個不起眼的角落裡。
03:34
This second story tells us everything
about how we got here
about how we got here
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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？
以及下一步將何去何從？
03:38
and where we need to go next.
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03:41
The first story starts with a child
psychiatrist at Johns Hopkins Hospital
psychiatrist at Johns Hopkins Hospital
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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
的一位兒童精神科醫生
03:45
named Leo Kanner.
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名叫李奧．肯納。
03:47
In 1943, Kanner published a paper
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在 1943 年，肯納發表了一篇論文，
內容描述他的 11 名年輕患者：
內容描述他的 11 名年輕患者：
03:51
describing 11 young patients
who seemed to inhabit private worlds,
who seemed to inhabit private worlds,
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他們彷彿躲在自己的世界當中，
03:56
ignoring the people around them,
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完全忽視別人的存在，
03:58
even their own parents.
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甚至包括自己的父母。
04:00
They could amuse themselves for hours
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他們可以連續好幾個小時，
04:02
by flapping their hands
in front of their faces,
in front of their faces,
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不停地在面前拍手，而且能自得其樂；
04:05
but they were panicked by little things
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但可能因為一點小事而驚慌失措，
04:07
like their favorite toy
being moved from its usual place
being moved from its usual place
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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。
04:10
without their knowledge.
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根據這些來就診的病人，
04:12
Based on the patients
who were brought to his clinic,
who were brought to his clinic,
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04:15
Kanner speculated
that autism is very rare.
that autism is very rare.
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肯納推測自閉症是非常罕見的。
04:19
By the 1950s, as the world's
leading authority on the subject,
leading authority on the subject,
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在 1950 年代，
身為這個研究主題的權威，
身為這個研究主題的權威，
04:23
he declared that he had seen
less than 150 true cases of his syndrome
less than 150 true cases of his syndrome
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肯納宣稱他所見過
真正符合症狀的個案不到 150 位，
真正符合症狀的個案不到 150 位，
04:29
while fielding referrals from
as far away as South Africa.
as far away as South Africa.
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裡面甚至包括
遠從南非轉診而來的病患。
遠從南非轉診而來的病患。
04:33
That's actually not surprising,
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這個結果並不意外，
04:35
because Kanner's criteria
for diagnosing autism
for diagnosing autism
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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。
04:39
were incredibly selective.
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04:41
For example, he discouraged giving
the diagnosis to children who had seizures
the diagnosis to children who had seizures
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例如，他不鼓勵具有癲癇症狀的小孩
進行自閉症評估，
進行自閉症評估，
04:46
but now we know that epilepsy
is very common in autism.
is very common in autism.
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但現在我們知道，
癲癇是自閉症患者常見的症狀。
癲癇是自閉症患者常見的症狀。
04:50
He once bragged that he had turned
nine out of 10 kids
nine out of 10 kids
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他曾經大話宣稱：
那些由其他醫生轉介而來的病患，
04:53
referred to his office as autistic
by other clinicians
by other clinicians
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十分之九都不需要進行自閉症的評估。
04:57
without giving them an autism diagnosis.
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05:00
Kanner was a smart guy,
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肯納是個聰明的傢伙，
但是他的許多理論都沒有發展出結果。
05:02
but a number of his theories
didn't pan out.
didn't pan out.
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05:05
He classified autism as a form
of infantile psychosis
of infantile psychosis
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他將自閉症歸類為一種幼兒精神疾病，
05:08
caused by cold and unaffectionate parents.
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而且是由冷漠、無情的父母所造成的。
他形容，這些孩子就像是
05:12
These children, he said,
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05:14
had been kept neatly
in a refrigerator that didn't defrost.
in a refrigerator that didn't defrost.
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被整齊地冰凍在
無法解凍的冰箱之中。
無法解凍的冰箱之中。
05:19
At the same time, however,
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然而，肯納同時也注意到，
05:21
Kanner noticed that some
of his young patients
of his young patients
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有一些年輕患者
05:24
had special abilities
that clustered in certain areas
that clustered in certain areas
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在某些領域具有特殊才能，
05:27
like music, math and memory.
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例如音樂、數學和記憶等方面。
他的病患當中，有一位男孩
05:30
One boy in his clinic
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05:32
could distinguish between 18 symphonies
before he turned two.
before he turned two.
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在兩歲之前就能分辨出 18 首交響曲。
05:37
When his mother put on
one of his favorite records,
one of his favorite records,
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當他的母親播放他最喜歡的唱片之一時，
05:40
he would correctly declare,
"Beethoven!"
"Beethoven!"
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他會正確地判斷並說出：「貝多芬！」
05:43
But Kanner took a dim view
of these abilities,
of these abilities,
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但是肯納對這些能力毫不關心，
05:46
claiming that the kids
were just regurgitating things
were just regurgitating things
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他宣稱孩子們只是在重複
05:50
they'd heard their pompous parents say,
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從那些愛炫耀的父母身上聽來的話語，
05:52
desperate to earn their approval.
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目的只是為了贏得他們的認可。
05:55
As a result, autism became
a source of shame and stigma for families,
a source of shame and stigma for families,
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結果，自閉症變成了
家族中的恥辱和傷痛，
家族中的恥辱和傷痛，
06:00
and two generations of autistic children
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有兩個世代的自閉症兒童
06:03
were shipped off to institutions
for their own good,
for their own good,
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被送到醫療機構裡，
表面上是為了他們好，
表面上是為了他們好，
06:06
becoming invisible to the world at large.
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實際上卻是與世隔絕。
06:10
Amazingly, it wasn't until the 1970s
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令人驚訝地，一直到 1970 年代，
才有研究者開始檢驗
肯納「自閉症很罕見」的理論。
肯納「自閉症很罕見」的理論。
06:14
that researchers began to test
Kanner's theory that autism was rare.
Kanner's theory that autism was rare.
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06:19
Lorna Wing was a cognitive
psychologist in London
psychologist in London
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洛娜．溫是英國倫敦的認知心理學家，
06:23
who thought that Kanner's theory
of refrigerator parenting
of refrigerator parenting
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她告訴我：肯納的「冰箱養育理論」
06:26
were "bloody stupid," as she told me.
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實在是愚蠢透頂。
06:29
She and her husband John were warm
and affectionate people,
and affectionate people,
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洛娜和丈夫約翰
都是溫暖和深情的人，
都是溫暖和深情的人，
而他們有一個
重度自閉症的女兒，名叫蘇西。
重度自閉症的女兒，名叫蘇西。
06:33
and they had a profoundly
autistic daughter named Susie.
autistic daughter named Susie.
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洛娜和約翰知道，
如果沒有通過自閉症評估，
如果沒有通過自閉症評估，
06:37
Lorna and John knew how hard it was
to raise a child like Susie
to raise a child like Susie
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在得不到支援服務、
06:41
without support services,
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特殊教育以及其他資源的情況下，
06:43
special education,
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06:45
and the other resources that are
out of reach without a diagnosis.
out of reach without a diagnosis.
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要照顧像蘇西一樣的孩子有多麼困難。
06:49
To make the case
to the National Health Service
to the National Health Service
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為了說服英國的國民保健署，
06:52
that more resources were needed
for autistic children and their families,
for autistic children and their families,
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讓他們瞭解自閉症兒童及家庭
需要更多的資源，
需要更多的資源，
洛娜和她的同事茱迪絲．高爾德
06:57
Lorna and her colleague Judith Gould
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06:59
decided to do something that should
have been done 30 years earlier.
have been done 30 years earlier.
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決定去做一件
30 年前就應該完成的事。
30 年前就應該完成的事。
07:04
They undertook a study of autism
prevalence in the general population.
prevalence in the general population.
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他們著手進行一項
「自閉症罹患比率」的研究。
「自閉症罹患比率」的研究。
07:09
They pounded the pavement
in a London suburb called Camberwell
in a London suburb called Camberwell
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他們在倫敦南部市郊的
坎伯威爾地區四處奔走，
坎伯威爾地區四處奔走，
07:13
to try to find autistic children
in the community.
in the community.
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試著找出當地的自閉症兒童。
07:17
What they saw made clear
that Kanner's model was way too narrow,
that Kanner's model was way too narrow,
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他們看到的結果清楚地顯示：
肯納的模型過於偏狹。
肯納的模型過於偏狹。
07:21
while the reality of autism
was much more colorful and diverse.
was much more colorful and diverse.
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事實上，自閉症的樣貌
是更為豐富而多元的。
是更為豐富而多元的。
他們發現有些孩子完全不說話，
07:26
Some kids couldn't talk at all,
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07:28
while others waxed on at length
about their fascination with astrophysics,
about their fascination with astrophysics,
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但另一些孩子的言語充分表現出
對於天文物理學、
對於天文物理學、
07:33
dinosaurs or the genealogy of royalty.
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恐龍或皇室族譜等主題的喜好。
07:37
In other words, these children
didn't fit into nice, neat boxes,
didn't fit into nice, neat boxes,
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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，
「漂亮、整齊的盒子」當中，
07:42
as Judith put it,
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他們看到各種不同的自閉症類型，
07:43
and they saw lots of them,
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07:45
way more than Kanner's monolithic model
would have predicted.
would have predicted.
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遠遠超出肯納的單一模型
所能預測的結果。
所能預測的結果。
07:49
At first, they were at a loss
to make sense of their data.
to make sense of their data.
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一開始，他們對於蒐集到的資料
感到困惑不解。
感到困惑不解。
07:53
How had no one noticed
these children before?
these children before?
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為什麼從前沒有人注意到這些孩子？
07:56
But then Lorna came upon a reference
to a paper that had been published
to a paper that had been published
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但後來，洛娜偶然發現了
一篇 1944 年在德國所發表的論文。
07:59
in German in 1944,
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08:02
the year after Kanner's paper,
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那剛好是在肯納發表論文之後的隔年，
08:04
and then forgotten,
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但是這篇論文被遺忘了，
08:06
buried with the ashes of a terrible time
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被埋藏在可怕時光的塵埃當中，
08:09
that no one wanted to remember
or think about.
or think about.
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沒有人想憶起。
08:12
Kanner knew about this competing paper,
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肯納其實知道這一篇
與他立場相反的論文，
與他立場相反的論文，
08:15
but scrupulously avoided
mentioning it in his own work.
mentioning it in his own work.
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但是他在研究過程中絕口不提。
這篇論文甚至從來沒有被翻譯成英文，
08:19
It had never even
been translated into English,
been translated into English,
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08:22
but luckily, Lorna's husband spoke German,
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但幸運的是，洛娜的丈夫懂德語，
08:25
and he translated it for her.
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所以他能為洛娜翻譯。
08:27
The paper offered
an alternate story of autism.
an alternate story of autism.
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那篇論文敘述了
另一個關於自閉症的故事。
另一個關於自閉症的故事。
論文的作者是一位
名叫漢斯．亞斯伯格的醫生，
名叫漢斯．亞斯伯格的醫生，
08:31
Its author was a man named Hans Asperger,
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08:34
who ran a combination clinic
and residential school
and residential school
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1930 年代，他在維也納開設診所，
08:37
in Vienna in the 1930s.
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並且兼具寄宿性學校的功能。
08:40
Asperger's ideas about teaching children
with learning differences
with learning differences
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當時亞斯伯格根據兒童的學習差異
提供不同的教導方式，
提供不同的教導方式，
08:44
were progressive even
by contemporary standards.
by contemporary standards.
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以現代的標準來看仍然是重大的革新。
08:47
Mornings at his clinic began
with exercise classes set to music,
with exercise classes set to music,
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他的診所在每天早晨安排了音樂律動課程，
08:51
and the children put on plays
on Sunday afternoons.
on Sunday afternoons.
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星期天下午則是讓孩子們進行表演。
08:55
Instead of blaming parents
for causing autism,
for causing autism,
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亞斯伯格並未將自閉症歸咎於父母，
08:58
Asperger framed it as a lifelong,
polygenetic disability
polygenetic disability
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而是將它視為一種終身、
具有多種成因的疾病，
具有多種成因的疾病，
09:03
that requires compassionate forms
of support and accommodations
of support and accommodations
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需要給予患者一輩子的
關懷、支持與體諒。
09:07
over the course of one's whole life.
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亞斯伯格並不把診所裡的孩子視為病人，
09:10
Rather than treating the kids
in his clinic like patients,
in his clinic like patients,
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09:13
Asperger called them
his little professors,
his little professors,
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而是稱呼他們為「小教授」，
09:16
and enlisted their help in developing
methods of education
methods of education
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並在徵得他們的協助之下，
為孩子們設計適合的教育方式。
09:20
that were particularly suited to them.
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09:22
Crucially, Asperger viewed autism
as a diverse continuum
as a diverse continuum
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最重要的是，亞斯伯格將自閉症
視為一種多元的連續光譜，
視為一種多元的連續光譜，
09:28
that spans an astonishing range
of giftedness and disability.
of giftedness and disability.
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涵蓋的範圍極為廣泛，
無論天才或是智能障礙都包括在內。
無論天才或是智能障礙都包括在內。
09:33
He believed that autism
and autistic traits are common
and autistic traits are common
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他認為，「自閉症」
和「自閉特質」是很普遍的，
和「自閉特質」是很普遍的，
09:37
and always have been,
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而且存在已久，
09:38
seeing aspects of this continuum
in familiar archetypes from pop culture
in familiar archetypes from pop culture
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用一般人熟悉的方式，
來形容自閉症光譜的特質，
來形容自閉症光譜的特質，
09:44
like the socially awkward scientist
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就像是不善社交的科學家，
09:46
and the absent-minded professor.
178
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或者是心不在焉的學者。
09:49
He went so far as to say,
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亞斯伯格更進一步認為，
09:51
it seems that for success
in science and art,
in science and art,
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人類在科學和藝術方面的成就，
09:54
a dash of autism is essential.
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自閉症患者都發揮了重要的影響。
洛娜和茱迪絲發現，
肯納提出的「自閉症很罕見」
肯納提出的「自閉症很罕見」
09:58
Lorna and Judith realized that Kanner
had been as wrong about autism being rare
had been as wrong about autism being rare
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10:03
as he had been about parents causing it.
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以及「自閉症是父母所造成」
都是錯誤的觀點。
都是錯誤的觀點。
10:05
Over the next several years,
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在接下來的幾年裡，
10:07
they quietly worked with
the American Psychiatric Association
the American Psychiatric Association
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他們悄悄地與美國精神醫學學會合作，
10:11
to broaden the criteria for diagnosis
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放寬評估項目，
10:13
to reflect the diversity of what
they called "the autism spectrum."
they called "the autism spectrum."
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以反映出「自閉症光譜」的多元性質。
10:17
In the late '80s and early 1990s,
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在 80 年代末和 90 年代初，
10:20
their changes went into effect,
189
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評估項目的變更生效，
10:22
swapping out Kanner's narrow model
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原本肯納的狹隘模型被取代，
10:25
for Asperger's broad and inclusive one.
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改採亞斯伯格更具包容性的廣泛標準。
10:28
These changes weren't
happening in a vacuum.
happening in a vacuum.
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這些改變並不是憑空而來的。
10:31
By coincidence, as Lorna and Judith
worked behind the scenes
worked behind the scenes
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巧合的是，洛娜和茱迪絲隱身於幕後，
10:35
to reform the criteria,
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進行評估標準的改革時，
10:37
people all over the world were seeing
an autistic adult for the first time.
an autistic adult for the first time.
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全世界的民眾也首次見到
自閉症成人患者的樣貌。
自閉症成人患者的樣貌。
10:42
Before "Rain Man" came out in 1988,
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在 1988 年的電影《雨人》上映之前，
只有一小群專家知道什麼是自閉症。
10:45
only a tiny, ingrown circle of experts
knew what autism looked like,
knew what autism looked like,
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10:50
but after Dustin Hoffman's unforgettable
performance as Raymond Babbitt
performance as Raymond Babbitt
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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，
雷蒙．巴比特，實在令人難忘，
並且贏得了四項奧斯卡大獎，
10:54
earned "Rain Man" four Academy Awards,
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10:58
pediatricians, psychologists,
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全球無數的小兒科醫生、心理學家、
11:00
teachers and parents all over the world
knew what autism looked like.
knew what autism looked like.
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教師和家長，
才開始對自閉症有所瞭解。
才開始對自閉症有所瞭解。
11:05
Coincidentally, at the same time,
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更巧合的是，就在同一時間，
11:08
the first easy-to-use clinical tests
for diagnosing autism were introduced.
for diagnosing autism were introduced.
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5130
出現了第一個方便使用的
自閉症臨床診斷標準。
自閉症臨床診斷標準。
你不再只能依靠一小群的專家，
11:13
You no longer had to have a connection
to that tiny circle of experts
to that tiny circle of experts
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11:18
to get your child evaluated.
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就能對您的孩子進行評估。
11:21
The combination of "Rain Man,"
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電影《雨人》的上映、
11:23
the changes to the criteria,
and the introduction of these tests
and the introduction of these tests
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評估標準的改革，
以及診斷方法的引進，
以及診斷方法的引進，
11:27
created a network effect,
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共同形成了網路效應，
11:29
a perfect storm of autism awareness.
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對於自閉症的認知，
像風暴一般席捲全球。
像風暴一般席捲全球。
11:33
The number of diagnoses started to soar,
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自閉症的確診人數開始大量增加，
11:36
just as Lorna and Judith predicted,
indeed hoped, that it would,
indeed hoped, that it would,
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就像洛娜和茱迪絲
所預測、期望的那樣，
所預測、期望的那樣，
11:41
enabling autistic people
and their families
and their families
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這也讓自閉症患者和他們的家庭，
11:44
to finally get the support
and services they deserved.
and services they deserved.
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終於可以得到應有的支援和服務。
11:47
Then Andrew Wakefield came along
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接下來是安德魯．韋克菲爾德，
11:49
to blame the spike
in diagnoses on vaccines,
in diagnoses on vaccines,
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他把自閉症的起因歸咎於疫苗，
但是這個簡單有力、容易相信的故事，
11:53
a simple, powerful,
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11:55
and seductively believable story
217
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就像肯納的理論「自閉症很罕見」一樣，
11:58
that was as wrong as Kanner's theory
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12:00
that autism was rare.
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完全錯誤。
12:03
If the CDC's current estimate,
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根據美國疾病控制與預防中心的估計，
在美國每 68 位兒童，
就有 1 位在自閉症光譜上。
就有 1 位在自閉症光譜上。
12:06
that one in 68 kids in America
are on the spectrum, is correct,
are on the spectrum, is correct,
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12:11
autistics are one of the largest
minority groups in the world.
minority groups in the world.
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如果這個估計正確，
自閉症就是全球最大的弱勢族群。
自閉症就是全球最大的弱勢族群。
12:15
In recent years, autistic people
have come together on the Internet
have come together on the Internet
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近年來，自閉症患者在網路上聚集，
12:19
to reject the notion that they
are puzzles to be solved
are puzzles to be solved
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3645
他們反對外界將他們視為
需要未來醫學科技解決的問題，
12:22
by the next medical breakthrough,
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12:24
coining the term "neurodiversity"
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他們創造了「神經多元性」一詞，
12:27
to celebrate the varieties
of human cognition.
of human cognition.
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來讚揚人類認知發展的多元特質。
12:31
One way to understand neurodiversity
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2391
要瞭解「神經多元性」這個名詞，
12:33
is to think in terms
of human operating systems.
of human operating systems.
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可以把它想像成人類的作業系統。
12:37
Just because a P.C. is not running Windows
doesn't mean that it's broken.
doesn't mean that it's broken.
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就像是一部沒有採用 Windows 的電腦，
並不代表這部電腦壞了。
12:42
By autistic standards,
the normal human brain
the normal human brain
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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，
容易被擾亂、分心，
12:45
is easily distractable,
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2020
12:47
obsessively social,
233
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1788
過度沉迷於社交活動，
12:49
and suffers from a deficit
of attention to detail.
of attention to detail.
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以及不夠重視細節。
12:52
To be sure, autistic people
have a hard time
have a hard time
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可以肯定的是，自閉症患者生活在這個
12:55
living in a world not built for them.
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並不屬於他們的世界中，其實很辛苦。
12:58
[Seventy] years later, we're still
catching up to Asperger,
catching up to Asperger,
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70 年後的今天，
我們仍追隨著亞斯伯格的腳步，
我們仍追隨著亞斯伯格的腳步，
他認為，對於自閉症患者
最好的「解藥」，
最好的「解藥」，
13:02
who believed that the "cure"
for the most disabling aspects of autism
for the most disabling aspects of autism
238
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4083
13:06
is to be found in understanding teachers,
239
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需要能理解自閉症的教師、
13:09
accommodating employers,
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2136
具有包容力的雇主、
能提供支持的社群，
13:11
supportive communities,
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以及相信孩子具有潛能的家長。
13:13
and parents who have faith
in their children's potential.
in their children's potential.
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3344
13:16
An autistic woman
named Zosia Zaks once said,
named Zosia Zaks once said,
243
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一位自閉症患者扎西亞．扎克斯曾說：
13:19
"We need all hands on deck
to right the ship of humanity."
to right the ship of humanity."
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5303
「我們需要大家攜手合作，
帶領人類朝著正確的方向前進。」
帶領人類朝著正確的方向前進。」
13:25
As we sail into an uncertain future,
245
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2553
面對不確定的未來，
13:27
we need every form
of human intelligence on the planet
of human intelligence on the planet
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3738
我們需要這個世界上各種形式的智慧，
13:31
working together to tackle
the challenges that we face as a society.
the challenges that we face as a society.
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共同致力於解決社會所面臨的挑戰。
我們不能再浪費任何一個人的頭腦。
13:37
We can't afford to waste a brain.
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13:39
Thank you.
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謝謝！
（掌聲）
13:42
(Applause)
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ABOUT THE SPEAKER
Steve Silberman - Writer and editorSteve Silberman is a writer and contributing editor for Wired who covers science and society. His newest book explores neurodiversity and the link between autism and genius.
Why you should listen
Steve Silberman is a writer and contributing editor for Wired and other national magazines. In 2001, he published "The Geek Syndrome," one of the first articles in the mainstream press to probe the complex relationship between autism and genius. The article was praised by experts in the field like neurologist Oliver Sacks and author Temple Grandin, but as time went on, Silberman was haunted by the biggest question that he had left unanswered: Why have rates of autism diagnosis increased so steeply in the past 30 years?
This question has become particularly pressing in the face of a resurgence of measles, mumps, pertussis and other childhood diseases worldwide due to parental fears of vaccines, despite numerous studies debunking their alleged connection to autism. To solve that medical mystery for his new book, NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, due out in August 2015, Silberman went back to the first years of autism research, where he uncovered a series of events -- some long forgotten, and others deliberately buried -- that will require the history of autism to be rewritten.
A former teaching assistant for the poet Allen Ginsberg, Silberman has won numerous awards over the years for his science coverage in the New Yorker, Nature and many other national and international magazines.
More profile about the speakerThis question has become particularly pressing in the face of a resurgence of measles, mumps, pertussis and other childhood diseases worldwide due to parental fears of vaccines, despite numerous studies debunking their alleged connection to autism. To solve that medical mystery for his new book, NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, due out in August 2015, Silberman went back to the first years of autism research, where he uncovered a series of events -- some long forgotten, and others deliberately buried -- that will require the history of autism to be rewritten.
A former teaching assistant for the poet Allen Ginsberg, Silberman has won numerous awards over the years for his science coverage in the New Yorker, Nature and many other national and international magazines.
Steve Silberman | Speaker | TED.com