Ami Klin: A new way to diagnose autism

22,307 views ・ 2015-07-15

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00:00
Translator: Joseph Geni Reviewer: Morton Bast
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譯者: Yanne C 審譯者: Anny Chung
00:12
I always wanted to become a walking laboratory of social engagement:
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我總是想成為
人際交流的行動實驗室
藉由和別人在一起
00:18
to resonate other people's feelings, thoughts, intentions, motivations,
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來體會他們的感受、想法、意圖與動機
00:23
in the act of being with them.
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00:26
As a scientist, I always wanted to measure that resonance,
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身為科學家,我總希望能度量這種人與人之間
00:32
that sense of the other that happens so quickly,
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身為科學家,我總希望能度量這種人與人之間
00:35
in the blink of an eye.
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瞬間即生的共鳴感
00:37
We intuit other people's feelings;
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我們能自然領會別人的感受
00:40
we know the meaning of their actions even before they happen.
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甚至在他們行動以前
就知道行動所代表的意義
00:43
We're always in this stance
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無論何時
00:45
of being the object of somebody else's subjectivity.
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我們總是某人主觀意識中的客體
00:48
We do that all the time. We just can't shake it off.
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這是我們無法擺脫的一點
00:52
It's so important that the very tools we use to understand ourselves,
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這很重要
我們正是仰賴這一點
00:55
to understand the world around us,
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來學會了解我們自己及周遭的世界
00:57
are shaped by that stance.
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01:00
We are social to the core.
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我們完完全全是社會動物
01:03
So my journey in autism really started
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我對自閉症的了解是從我住進一個
01:06
when I lived in a residential unit for adults with autism.
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為自閉症患者而設的成人之家中開始的
他們多數都在醫院裡度過大部分的人生
01:10
Most of those individuals had spent most of their lives
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01:13
in long-stay hospitals.
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這是很久以前的事了
01:14
This is a long time ago.
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01:17
And for them, autism was devastating.
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對他們來說,自閉症是場災難
01:21
They had profound intellectual disabilities.
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他們有嚴重的智力障礙、不說話
01:24
They didn't talk.
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更糟的是
01:26
But most of all,
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他們極度封閉在自己的世界裡
01:28
they were extraordinarily isolated from the world around them,
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與周遭的環境隔絕
01:33
from their environment
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與他人隔絕
01:35
and from the people.
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01:37
In fact, at the time, if you walked into a school
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如果你走進一所當時的自閉症特教學校
01:40
for individuals with autism,
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事實上你會聽到很多聲音
01:42
you'd hear a lot of noise,
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01:44
plenty of commotion, actions, people doing things.
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喧鬧聲、人們做各種事情的聲音
01:49
But they're always doing things by themselves.
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但他們總是各自做自己的事
01:53
So they may be looking at a light in the ceiling,
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可能在看天花板上的燈
01:57
or they may be isolated in the corner,
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可能獨自待在角落
02:00
or they might be engaged in these repetitive movements,
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或反覆做一些無意義的動作
02:04
in self-stimulatory movements that led them nowhere.
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來達到自我刺激的目的
02:08
Extremely, extremely isolated.
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極度地封閉在自己的世界裡
02:12
Well, now we know that autism is this disruption,
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如今我們知道
是自閉症使他們無法
02:18
the disruption of this resonance that I am telling you about.
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與他人產生共鳴感
02:21
These are survival skills.
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但這是生存本能
02:23
These are survival skills that we inherited
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是經由數十萬年的演化
所傳承下來的生存本能
02:26
over many, many hundreds of thousands of years of evolution.
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所傳承下來的生存本能
02:30
You see, babies are born in a state of utter fragility.
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你們都知道,新生兒是全然無助的
02:36
Without the caregiver, they wouldn't survive,
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沒有人照顧便不能生存
02:38
so it stands to reason that nature would endow them
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所以大自然賦予他們
02:40
with these mechanisms of survival.
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這些生存的機制
他們會追尋照顧他們的人
02:44
They orient to the caregiver.
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02:46
From the first days and weeks of life,
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從出生後的幾天到幾周內
02:49
babies prefer to hear human sounds,
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嬰兒就偏好人聲
02:52
rather than just sounds in the environment.
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而不是周遭的其他聲音
02:54
They prefer to look at people rather than at things,
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他們偏好看著人而不是其他東西
02:57
and even as they're looking at people, they look at people's eyes,
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當他們對著人看時
他們甚至會盯著人的眼睛看
03:01
because the eye is the window to the other person's experiences,
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因為眼睛是通往他人經驗的途徑
03:05
so much so that they even prefer to look at people
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所以他們甚至會偏好盯著正在看他們的人
03:08
who are looking at them rather than people who are looking away.
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而不是看著旁邊的人
03:12
Well, they orient to the caregiver.
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他們追尋照顧他們的人
03:15
The caregiver seeks the baby.
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照顧者則追尋著嬰兒
03:17
And it's out of this mutually reinforcing choreography
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人的心智,尤其是社會性的心智
03:21
that a lot that is of importance to the emergence of mind --
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就是在這如舞步般的過程中
03:24
the social mind, the social brain -- depends on.
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一來一往、逐漸成形
03:29
We always think about autism
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我們總以為自閉症
03:32
as something that happens later on in life.
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是出生成長後逐漸形成的
03:37
It doesn't; it begins with the beginning of life.
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不是這樣的。它在出生時就發生了
03:42
As babies engage with caregivers, they soon realize that, well,
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當嬰兒接觸到照顧他們的人
他們很快就理解到,在兩耳間
03:48
there is something between the ears that is very important --
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有些非常重要的東西
03:52
it's invisible, you can't see it, but it's really critical.
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那是看不到、但非常重要的東西─
03:56
And that thing is called attention.
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就是別人對他們的關注
03:58
And they learn soon enough,
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在能夠開口說話前
04:00
even before they can utter one word,
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他們就先學會藉由吸引別人的注意
04:02
that they can take that attention and move somewhere
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來得到自己想要的
04:06
in order to get things they want.
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04:09
They also learn to follow other people's gazes,
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他們也學會跟隨別人的目光
04:12
because whatever people are looking at is what they are thinking about.
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因為別人目光所及
就是他們心中所想
04:18
And soon enough, they start to learn about the meaning of things,
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很快地,他們就開始學習事物的意義
因為當某人看著一樣東西
04:22
because when somebody is looking at something
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04:24
or somebody is pointing at something,
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或是指著一樣東西
那並不只代表了一個方向
04:27
they're not just getting a directional cue.
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04:29
They are getting the other person's meaning of that thing,
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也代表了這樣東西對這個人的意義
這個人對這樣東西的看法
04:33
the attitude.
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04:34
And soon enough, they start building this body of meanings,
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他們開始架構事物的意義
04:39
but meanings that were acquired within the realm of social interaction.
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那些他們在跟別人互動的過程中
所學習到的意義
04:44
Those are meanings that are acquired
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這些都是從與他人共享的經驗中
04:46
as part of their shared experiences with others.
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所學習到的
04:50
Well, this is a 15-month-old little girl,
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這是一個十五個月大
患有自閉症的小女孩
04:57
and she has autism.
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05:00
And I am coming so close to her that I am maybe two inches from her face,
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我已經靠近到離她的臉只有五公分
她卻完全無視於我
05:06
and she's quite oblivious to me.
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05:08
Imagine if I did that to you, came two inches from your face.
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想像一下我對你做同樣的事
我向你靠近到離你的臉只有五公分
05:11
You'd do probably two things, wouldn't you?
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你可能會有兩個反應
05:13
You would recoil. You would call the police.
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你會向後退、或是叫警察(笑聲)
05:16
(Laughter)
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05:17
You would do something,
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你一定會做點什麼
05:18
because it's literally impossible to penetrate somebody's physical space
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因為侵犯到某人的空間而不引起任何反應
實在是不太可能的事
05:23
and not get that reaction.
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05:24
We do so, remember, intuitively, effortlessly.
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記住,這是我們不加思索的直覺反應
05:27
This is our body wisdom;
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是我們身體自然的判斷
05:29
it's not something mediated by our language.
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不需要言語作為媒介
05:31
Our body just knows that.
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我們的身體本來就知道該這樣做
05:34
And we've known that for a long time.
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05:36
And this is not something that happens to humans only.
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而這並不是人類獨有的
05:39
It happens to some of our phyletic cousins,
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我們在演化上的遠親也是如此
05:42
because if you're a monkey, and you look at another monkey,
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因為如果你是隻猴子
你這樣看著另一隻地位比你高的猴子
05:46
and that monkey has a higher hierarchy position than you,
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你這樣看著另一隻地位比你高的猴子
05:50
and that is considered to be a signal or threat,
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而你的舉動被認為是一種暗示或威脅
05:54
well, you are not going to be alive for long.
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你就活不久了
05:57
So something that in other species are survival mechanisms,
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這對其他物種來說
是不可或缺的生存本能
06:02
without which they wouldn't basically live,
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06:05
we bring into the context of human beings,
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對人類而言
06:07
and this is what we need to simply act, socially.
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則是產生人際互動的基本條件
06:12
Now, she is oblivious to me and I'm so close to her,
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好,我離她這麼近她還是無視於我
06:14
and you think, maybe she can see you,
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你們可能會想
06:16
maybe she can hear you.
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她也許看得見或聽得見我
06:18
Well, a few minutes later,
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幾分鐘後她到房間的角落去了
06:20
she goes to the corner of the room,
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找到一小顆M&M's巧克力
06:22
and she finds a tiny little piece of candy, an M&M.
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06:26
So I could not attract her attention,
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所以我不能吸引她的注意
06:31
but something -- a thing -- did.
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但是某樣東西卻可以
06:33
Now, most of us make a big dichotomy
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好,我們多數人會用二分法來看這世界─
06:36
between the world of things and the world of people.
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物品的世界、人的世界
06:40
Now, for this girl, that division line is not so clear,
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但對這女孩來說,人與物的分別
06:45
and the world of people is not attracting her
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不是那麼清楚,而人的世界
06:48
as much as we would like.
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並不像我們所想的那樣吸引她
06:50
Now, remember that we learn a great deal by sharing experiences.
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要記住
我們很多的學習都是從經驗分享而來
06:54
What she is doing right now is that her path of learning is diverging,
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現在在她身上發生的事是
她的學習隨著她越來越封閉自己
07:00
moment by moment,
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07:02
as she is isolating herself further and further.
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而逐漸走上不同的道路
07:05
So we feel sometimes that the brain is deterministic,
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所以有時候我們會覺得
07:08
the brain determines who we're going to be.
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大腦決定了我們會成為怎樣的人
07:11
But, in fact, the brain also becomes who we are,
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但事實上我們也會影響大腦的發展
07:14
and at the same time that her behaviors are taking away
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所以當她跟別人的互動越來越少
07:18
from the realm of social interaction,
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在此同時
07:20
this is what's happening with her mind,
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這對她的心智及大腦都造成影響
07:22
and this is what's happening with her brain.
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自閉症是所有發展障礙中
07:27
Well, autism is the most strongly genetic condition
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07:32
of all developmental disorders.
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與基因關聯最強的一種
它是一種腦部疾病
07:36
And it's a brain disorder.
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07:38
It's a disorder that begins much prior to the time
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是一種早在出生前就發生的疾病
07:41
that the child is born.
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是一種早在出生前就發生的疾病
07:44
We now know that there is a very broad spectrum of autism.
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我們現在知道了
自閉症會以很多不同樣貌顯現
07:48
There are those individuals who are profoundly intellectually disabled
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有些人有嚴重的智力障礙
07:51
but there are those that are gifted.
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07:53
There are those individuals who don't talk at all;
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有些人則是有特殊的天份
有些人完全不說話,有些人卻說個不停
07:56
there are those individuals who talk too much.
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如果你到他們的學校去
07:58
There are those individuals that if you observe them in their school,
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你可能會看到有些人若未經制止
08:02
you see them running the periphery fence all the school day if you let them,
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會繞著學校的圍籬跑個不停
08:05
to those individuals who cannot stop coming to you
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有些人則會不斷試圖引起你的注意
有些人則會不斷試圖引起你的注意
08:08
and trying to engage you repeatedly, relentlessly,
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但他們使用的方式通常讓人感到不舒服
08:11
but often in an awkward fashion,
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也無法引起別人共鳴
08:14
without that immediate resonance.
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08:17
Well, this is much more prevalent than we thought at the time.
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這種狀況遠比我們當初想的要普遍
08:21
When I started in this field,
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當我剛踏入這個領域時
08:23
we thought there were four individuals with autism per 10,000 --
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我們認為每一萬人中約有四人患有自閉症
算是一種很罕見的疾病
08:26
a very rare condition.
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08:27
Well, now we know it's more like one in 100.
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現在我們知道大約每百人中就有一個
08:31
There are millions of individuals with autism all around us.
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我們周遭有幾百萬的人患有自閉症
08:37
The societal cost of this condition is huge,
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這種疾病的社會成本很大
08:40
in the US alone, maybe 35 to 80 billion dollars.
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只在美國,也許就要花上350億到800億美金
08:43
And you know what?
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而你們知道嗎?
08:44
Most of those funds are associated with adolescents and particularly adults
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絕大多數的經費都被用在
08:49
who are severely disabled,
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青少年及有嚴重障礙的成人身上
08:51
individuals who need wraparound services --
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他們需要非常密集的全方位服務
08:53
services that are very, very intensive.
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他們需要非常密集的全方位服務
08:55
And those services can cost in excess of 60,000 to 80,000 dollars a year.
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每年就需要六到八萬美金以上的費用
09:00
Those are individuals who did not benefit from early treatment,
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這些都是未從早期療育獲益的人
因為我們現在知道,當他們的學習
09:04
because now we know that autism creates itself
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09:08
as individuals diverge in that pathway of learning that I mentioned to you.
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像我之前說的那樣走上另一條路時
自閉症的狀況就會越加惡化
09:13
Were we to be able to identify this condition
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如果我們能做到早期發現
09:15
at an earlier point, and intervene and treat --
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並且在早期就介入治療
09:19
I can tell you, this has been probably something that has changed my life
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我告訴你們
我們絕對可以減輕自閉症的症狀
09:23
in the past 10 years,
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09:25
this notion that we can absolutely attenuate this condition.
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這個想法在過去十年裡
改變了我的人生
09:30
Also, we have a window of opportunity,
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但我們只有一小段時間可以採取行動
09:33
because the brain is malleable for just so long,
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因為大腦只在那一段時間裡有可塑性
09:36
and that window of opportunity happens in the first three years of life.
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這段寶貴的時間是在三歲以前
這段寶貴的時間是在三歲以前
09:39
It's not that that window closes; it doesn't.
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並不是說在那之後就完全沒有機會了
但是機會確實大大降低
09:43
But it diminishes considerably.
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09:46
And yet, the median age of diagnosis in this country
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目前在美國自閉症得到確診的平均年齡
一般還是在五歲
09:50
is still about five years,
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09:51
and in disadvantaged populations,
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對於那些得不到臨床服務
住在偏遠地區或
09:54
the populations that don't have access to clinical services,
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09:57
rural populations, minorities,
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身為少數族裔的弱勢族群來說
10:00
the age of diagnosis is later still,
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確診的年齡還要更晚
這幾乎像是我們對這些族群宣告
10:03
which is almost as if I were to tell you
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10:05
that we are condemning those communities to have individuals with autism
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他們的自閉症患者
注定要陷入越來越嚴重的狀況
10:08
whose condition is going to be more severe.
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10:12
So I feel that we have a bioethical imperative.
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就醫學倫理而言,我們有不可推卸的責任
10:15
The science is there.
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我們已經有這些科學知識
10:18
But no science is of relevance
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但如果它們不能為社會所用
10:20
if it doesn't have an impact on the community.
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它們就沒有多大用處
10:23
And we just can't afford that missed opportunity,
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而我們不能失去這樣的機會
10:26
because children with autism become adults with autism.
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因為患有自閉症的兒童會長大成人
我們如果能夠及早盡我們所能
10:30
And we feel that those things we can do
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10:34
for these children, for those families, early on,
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為他們及他們的家庭做點事
10:36
will have lifetime consequences --
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對這些家庭或整個社會來說
都會有長遠的影響
10:39
for the child, for the family, and for the community at large.
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這就是我們對自閉症的看法
10:43
So this is our view of autism.
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跟自閉症有關的基因有上百個
10:46
There are over a hundred genes that are associated with autism.
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事實上我們相信
10:49
In fact, we believe there are going to be
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可能有300到600個基因或基因異常
10:51
something between 300 and 600 genes associated with autism,
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10:55
and genetic anomalies, much more than just genes.
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與自閉症有關
問題來了
10:59
And we actually have a bit of a question here,
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11:03
because if there are so many different causes of autism,
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這麼多不同的不利因素
11:06
how do you go from those liabilities to the actual syndrome?
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到底是怎樣發展成自閉症的呢?
因為當人們─ 好比我自己
11:11
Because people like myself,
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走入一間遊戲室時
11:13
when we walk into a playroom,
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11:15
we recognize a child as having autism.
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我們可以分辨出一個孩子是不是有自閉症
11:18
So how do you go from multiple causes
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到底為什麼這麼多不同成因
最後會導致這麼相似的症狀呢?
11:21
to a syndrome that has some homogeneity?
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11:24
And the answer is what lies in between,
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原來答案在成因與呈現的症狀之間:
11:27
which is development.
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也就是孩子的發育
11:29
And in fact, we are very interested in those first two years of life,
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事實上,我們對兩歲之前這段時間非常有興趣
因為這些不利因素並不必然發展成自閉症
11:34
because those liabilities don't necessarily convert into autism.
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因為這些不利因素並不必然發展成自閉症
11:38
Autism creates itself.
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自閉症是自行形成
11:40
Were we to be able to intervene during those years of life,
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如果我們能在兩歲之前就介入
11:45
we might attenuate for some, and God knows, maybe even prevent for others.
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我們也許可以減輕一些孩子的症狀
誰知道,我們說不定甚至可以預防它的發生
11:51
So how do we do that?
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但我們要怎麼做呢?
11:53
How do we enter that feeling of resonance,
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我們要怎麼創造共鳴感?
11:56
how do we enter another person's being?
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又要怎麼進入另一個人的世界呢?
我記得在我跟那十五個月大的女孩互動時
12:01
I remember when I interacted with that 15-month-old,
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12:04
the thing that came to my mind was,
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我心裡在想
12:06
"How do you come into her world?
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「要怎麼進入她的世界呢?」
「她在想著我嗎?還是想著別人?」
12:09
Is she thinking about me? Is she thinking about others?"
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12:13
Well, it's hard to do that,
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嗯,這有點難做到
12:16
so we had to create the technologies.
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所以我們必須創造這樣的技術
12:18
We had to basically step inside a body.
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12:21
We had to see the world through her eyes.
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好透過她的眼睛來看這個世界
所以過去幾年中我們都在發展
12:25
And so in the past many years,
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12:27
we've been building these new technologies
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這種以眼球追蹤為基礎的新技術
12:29
that are based on eye tracking.
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12:31
We can see, moment by moment, what children are engaging with.
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我們可以每時每刻地看到
什麼吸引了孩子的注意
這是我同事瓦倫 ‧ 瓊斯
12:38
This is my colleague, Warren Jones,
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12:39
with whom we've been building these methods, these studies,
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在過去十二年中
12:43
for the past 12 years.
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我們一起做研究、發展這些方法
12:44
And you see there a happy five-month-old,
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這是一個快樂的男孩
五個月大
12:48
a five-month little boy who is going to watch things
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12:53
that are brought from his world:
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正要用眼睛去探索這個世界
12:56
his mom, the caregiver,
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看看他媽媽、照顧他的人
12:58
but also experiences that he would have were he to be in his daycare.
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還有其他在托兒所裡可能看見的事物
13:03
What we want is to embrace that world and bring it into our laboratory,
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我們想要做的是把他所經驗到的世界
帶進我們的實驗室
13:07
but in order for us to do that,
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但要做到這點
13:09
we had to create these very sophisticated measures,
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我們必須要能夠精密地測量
人們以及嬰幼兒
13:14
measures of how people, how little babies,
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13:17
how newborns, engage with the world, moment by moment.
243
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在每時每刻中是怎樣與這個世界互動
什麼對他們來說是重要的
什麼又是不重要的
13:22
What is important and what is not.
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13:25
Well, we created those measures,
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我們發展出了一些評量方法
13:27
and here, what you see is what we call a funnel of attention.
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這裡看到的是注意力的漏斗模型
13:31
You're watching a video --
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你們看到的是一段影片的紀錄
13:33
those frames are separated by about a second --
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每個影像的間距大概是一秒鐘
13:36
through the eyes of 35 typically developing two-year-olds.
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這是35個正常發展的兩歲幼兒
眼中所看到的世界
13:40
And we freeze one frame,
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我們現在停在其中一刻
13:43
and this is what the typical children are doing.
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這是正常發展的兩歲幼兒在做的事
13:47
In this scan pass, in green here, are two-year-olds with autism.
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綠色的這些則是有自閉症的孩子做的事
13:51
So on that frame, the children who are typical are watching this,
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所以在那一刻
正常的孩子在看這個
13:58
the emotion of expression of that little boy
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一個小男孩在跟一個小女孩吵架
14:00
as he's fighting a little bit with the little girl.
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所表現出的情緒反應
14:03
What are the children with autism doing?
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有自閉症的孩子又在做些什麼呢?
14:05
They are focusing on the revolving door,
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他們專心地看著旋轉門開開關關
14:09
opening and shutting.
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他們專心地看著旋轉門開開關關
14:11
Well, I can tell you that this divergence that you're seeing here
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我可以告訴你們
你們所看到的這些差異
14:14
doesn't happen only in our five-minute experiment.
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並不只發生在我們進行實驗的五分鐘裡
14:17
It happens moment by moment in their real lives,
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他們真實生活裡的每時每刻都是這樣的
14:21
and their minds are being formed and their brains are being specialized
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而他們的心智隨之成形
他們的大腦也以
14:26
in something other than what is happening with their typical peers.
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與其他孩子不同的方式成長
14:30
Well, we took a construct from our pediatrician friends,
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我們從當小兒科醫生的朋友處
我們從當小兒科醫生的朋友處
借用了生長曲線圖的概念
14:37
the concept of growth charts --
265
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14:38
you know, when you take a child to the pediatrician,
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當你帶小孩去看小兒科醫生時
你可以由此得知他的身高體重
14:41
and you have physical height and weight.
267
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3082
14:45
Well, we decided we were going to create growth charts
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所以我們決定要做出
社交發展的曲線圖來
14:48
of social engagement.
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14:50
We sought children from the time they're born.
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我們徵求新生兒來參與研究
14:53
What you see here on the x-axis
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在這X軸上是以月來看
14:56
is two, three, four, five, six months and nine,
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從兩個月到24個月
15:01
until about the age of 24 months.
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15:02
This is the percent of their viewing time
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這是他們盯著人眼看的時間百分比
15:05
that they're focusing on people's eyes,
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這是他們盯著人眼看的時間百分比
15:07
and this is their growth chart.
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這就是他們的發展曲線圖
他們一開始就喜歡看著別人的眼睛
15:10
They start over here -- they love people's eyes --
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2473
15:12
and it remains quite stable.
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這點一直沒有改變
15:15
It sort of goes up a little bit in those initial months.
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在最初的幾個月中它還上升了一點
15:19
Now, let's see what's happening with babies who became autistic.
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現在讓我們看看
後來被診斷出自閉症的孩子的發展曲線
15:23
It's something very different.
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它看起來就很不一樣了
15:26
It starts way up here, but then it's a free fall.
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它一開始在上面這邊,再來就一直下降
15:29
It's very much like they brought into this world the reflex
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就像他們生來具有追尋他人的本能
15:33
that orients them to people, but it has no traction.
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但這本能無法持續下去
15:37
It's almost as if that stimulus -- you --
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這幾乎像是「你」作為一個外界刺激
15:40
you're not exerting influence on what happens
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2990
在他們探索日常生活的過程中
15:43
as they navigate their daily lives.
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無足輕重
15:47
Now, we thought those data were so powerful, in a way,
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這些資料讓我們很想看看
出生後六個月的期間發生了什麼事
15:54
that we wanted to see what happened in the first six months of life,
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因為如果你試著跟兩、三個月大的嬰兒互動
15:57
because if you interact with a two- and a three-month-old,
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3208
因為如果你試著跟兩、三個月大的嬰兒互動
你會訝異他們是多麼善於與人接觸
16:01
you'd be surprised by how social those babies are.
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16:05
And what we see in the first six months of life
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我們在這頭六個月中所看到的是
這兩組嬰兒有非常明顯的分別
16:08
is that those two groups can be segregated very easily.
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16:14
And using these kinds of measures and many others,
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運用這些或者其他各類的測量方法
我們發現現代科學事實上可以做到
16:17
what we found out is that our science could, in fact,
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16:20
identify this condition early on.
296
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2224
早期發現這些狀況
16:23
We didn't have to wait for the behaviors of autism
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我們不用等到兩歲來看
16:26
to emerge in the second year of life.
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自閉症的行為是否出現
如果我們測量那些演化上保存下來的
16:30
If we measured things that are, evolutionarily, highly conserved,
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4527
在早期發展就會出現的東西
16:34
and developmentally very early-emerging --
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2323
16:37
things that are online from the first weeks of life --
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那些在出生後頭幾周就應該發生的事
16:39
we could push the detection of autism
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我們就能把診斷自閉症的時間
16:41
all the way to those first months,
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提早到出生後頭幾個月
16:44
and that's what we are doing now.
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1984
這就是我們現在在做的
16:48
Now, we can create the very best technologies
305
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3157
是的,我們可以發展出最好的科技
16:51
and the very best methods to identify the children,
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3006
最好的方法來找出這些孩子
但如果我們不能改變他們所處的現實環境
16:55
but this would be for naught if we didn't have an impact
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16:58
on what happens in their reality in the community.
308
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這些都是徒勞無功
17:01
Now we want those devices, of course,
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2282
當然我們會希望這些工具
17:03
to be deployed by those who are in the trenches --
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能被送到那些第一線工作人員的手中
17:06
our colleagues, the primary care physicians, who see every child --
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我們的同業
還有那些負責替孩子們看診的醫生
17:12
and we need to transform those technologies
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2363
我們必須要把這些科技轉變成
17:14
into something that is going to add value to their practice,
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能在實務上發揮價值的東西
17:17
because they have to see so many children.
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因為他們必須面對很多的孩子
17:19
And we want to do that universally so that we don't miss any child.
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4077
我們希望把它變成一個普遍性的措施
不要漏失任何一個孩子
17:23
But this would be immoral
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1611
但如果我們沒有介入及治療的配套措施
17:26
if we also did not have an infrastructure for intervention, for treatment.
317
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5363
但如果我們沒有介入及治療的配套措施
這就會是不道德的
17:32
We need to be able to work with the families, support the families,
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我們必須要和這些家庭一起合作
去支持他們度過頭幾年的時間
17:36
to manage those first years with them.
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3013
我們必須從普遍性的篩選
17:40
We need to be able to really go
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17:42
from universal screening to universal access to treatment,
321
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做到普遍性的治療
17:46
because those treatments are going to change
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因為這些治療將會改變這些孩子
17:49
these children's and those families' lives.
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以及他們家人的人生
一想到在這生命的頭幾年中
17:54
Now, when we think about what we [can] do in those first years,
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6438
我們能夠做些什麼
18:00
I can tell you, having been in this field for so long,
325
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4570
我告訴你
即使在這領域工作了這麼久
我還是感到充滿了幹勁
18:06
one feels really rejuvenated.
326
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2376
18:08
There is a sense that the science that one worked on
327
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4722
覺得我所鑽研的科學
能夠真正有所貢獻
18:13
can actually have an impact on realities,
328
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2769
18:16
preventing, in fact, those experiences
329
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讓其他人不會再有
18:19
that I really started in my journey in this field.
330
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2744
我初踏入這領域時的那種經驗
18:23
I thought at the time that this was an intractable condition.
331
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3410
那時我以為這是沒法治療的症狀
18:26
No longer. We can do a great deal of things.
332
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3279
不再是這樣了,我們有很多事可以做
18:30
And the idea is not to cure autism.
333
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但重點並不在治癒自閉症
18:33
That's not the idea.
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不是的
18:35
What we want is to make sure
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我們是想讓那些患有自閉症的人
18:37
that those individuals with autism can be free
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可以不必承受它的嚴重後果─
18:40
from the devastating consequences that come with it at times,
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可以不必承受它的嚴重後果─
18:44
the profound intellectual disabilities, the lack of language,
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嚴重的智力障礙、語言發展的缺乏
18:47
the profound, profound isolation.
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以及全然地封閉
18:51
We feel that individuals with autism, in fact,
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我們認為自閉症患者
18:53
have a very special perspective on the world,
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事實上擁有很特別的世界觀
18:56
and we need diversity.
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我們的社會需要多元性
18:58
And they can work extremely well in some areas of strength:
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而他們可以在穩定、明確的狀況下
19:02
predictable situations, situations that can be defined.
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發揮他們的長處
19:05
Because after all, they learn about the world
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畢竟他們專注於了解世界本來的面貌
19:08
almost, like, about it,
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而不是學習如何生活其中
19:10
rather than learning how to function in it.
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19:13
But this is a strength if you're working, for example, in technology.
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如果你在科技業工作
這就是項長處
19:18
And there are those individuals who have incredible artistic abilities.
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另外還有一些人
他們擁有非凡的藝術才能
19:21
We want them to be free to do that.
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我們希望他們可以不受自閉症所限
我們想讓未來的自閉症患者
19:24
We want that the next generations of individuals with autism
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19:27
will be able not only to express their strengths,
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不但可以發揮他們的長處
19:30
but to fulfill their promise.
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也可以達成他們的夢想
19:32
Well, thank you for listening to me.
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謝謝你們來聽我的演講(掌聲)
19:34
(Applause)
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