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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翻译人员: Lena Huang 校对人员: Ming Chen
00:12
I always wanted to become a walking laboratory of social engagement:
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我一直都想成为
社会交往中的一个能活动的实验室
在于他人相处时,理解他们的感受与思想,
00:18
to resonate other people's feelings, thoughts, intentions, motivations,
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意图和动机,从而产生共鸣.
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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作为一个科学家,我总想度量这种共鸣的感受
00:32
that sense of the other that happens so quickly,
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这种感受瞬间产生,
00:35
in the blink of an eye.
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仿佛在眨眼之间.
00:37
We intuit other people's feelings;
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我们凭直觉理解别人的感受
00:40
we know the meaning of their actions even before they happen.
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了解其行为所代表的意义
甚至在某个行为产生之前
00:43
We're always in this stance
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我们总是
00:45
of being the object of somebody else's subjectivity.
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别人主观意识里的客体
00:48
We do that all the time. We just can't shake it off.
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一直都是这样. 我们就是没法摆脱.
00:52
It's so important that the very tools we use to understand ourselves,
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而这一点又十分的重要,
以至于我们用来了解自我与世界的每一种工具
00:55
to understand the world around us,
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都深受这一状况的影响
00:57
are shaped by that stance.
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01:00
We are social to the core.
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人类本质上都是社会性的(群居的)
01:03
So my journey in autism really started
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因此,我真正的自闭症之旅始于
01:06
when I lived in a residential unit for adults with autism.
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我住进一个为成人自闭症患者设立的寓所
他们中的大多数人生活的大部分时间
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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都在医院里度过. 这是很久以前的事了.
01:14
This is a long time ago.
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01:17
And for them, autism was devastating.
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对他们来说,自闭症是及其可怕的.
01:21
They had profound intellectual disabilities.
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他们有严重的智力障碍
01:24
They didn't talk.
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他们不说话. 但最糟糕的是,
01:26
But most of all,
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他们极度封闭,生活在自己的世界里
01:28
they were extraordinarily isolated from the world around them,
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与周围的环境隔绝
01:33
from their environment
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与人隔绝
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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实际上,如果你走进一个为自闭症患者开办的学校
01:40
for individuals with autism,
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你会听到很多嘈杂的声音
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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各种喧闹,各种动作, 都在做着些什么
01:49
But they're always doing things by themselves.
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但他们总是各自做各自的事
01:53
So they may be looking at a light in the ceiling,
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有的人可能在看天花板上的一盏灯
01:57
or they may be isolated in the corner,
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有的人可能缩在一个角落里
02:00
or they might be engaged in these repetitive movements,
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他们可能不断地重复这些动作
02:04
in self-stimulatory movements that led them nowhere.
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这些自我刺激的动作毫无意义
02:08
Extremely, extremely isolated.
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他们极度地封闭.
02:12
Well, now we know that autism is this disruption,
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现在我们知道了,自闭症是一种功能的混乱
即共鸣功能的混乱,
02:18
the disruption of this resonance that I am telling you about.
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就是我刚才提到的
02:21
These are survival skills.
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这些是生存的基本技能
02:23
These are survival skills that we inherited
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这些生存技能是我们继承而来的
经由很多很多年的
02:26
over many, many hundreds of thousands of years of evolution.
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进化而来的
02:30
You see, babies are born in a state of utter fragility.
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大家都知道,婴儿生来是很脆弱的
02:36
Without the caregiver, they wouldn't survive,
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没有人照顾,他们活不下去
02:38
so it stands to reason that nature would endow them
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所以很合理地, 大自然赋予他们
02:40
with these mechanisms of survival.
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一种生存机制.
他们会亲近照顾者
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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在人们出生后的几天到几周里
02:49
babies prefer to hear human sounds,
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婴儿更偏好人的声音
02:52
rather than just sounds in the environment.
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相比环境的声音,他们喜欢人声.
02:54
They prefer to look at people rather than at things,
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他们喜欢盯着人看,胜过盯着东西看.
02:57
and even as they're looking at people, they look at people's eyes,
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甚至当他们看着人时,
他们会看人的眼睛
03:01
because the eye is the window to the other person's experiences,
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因为眼睛就是人生经验的一个窗口
03:05
so much so that they even prefer to look at people
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因此他们会更喜欢盯着那些正看着他们的人
03:08
who are looking at them rather than people who are looking away.
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而不是那些没有看他们的人
03:12
Well, they orient to the caregiver.
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他们会亲近照顾他们的人
03:15
The caregiver seeks the baby.
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而照顾者也会亲近婴儿
03:17
And it's out of this mutually reinforcing choreography
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在这种双向互助、一来一往如同舞蹈一样的过程中
03:21
that a lot that is of importance to the emergence of mind --
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对人的思想慢慢形成至关重要的各种因素便产生了
03:24
the social mind, the social brain -- depends on.
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人的社会心理,社会大脑也借此形成.
03:29
We always think about autism
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我们总以为自闭症
03:32
as something that happens later on in life.
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是后天形成的
03:37
It doesn't; it begins with the beginning of life.
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其实并非如此. 自闭症在孩子出生的时候就有了.
03:42
As babies engage with caregivers, they soon realize that, well,
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当婴儿和照顾者在一起时, 他们很快便意识到
在两个人的耳朵之间
03:48
there is something between the ears that is very important --
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存在着很重要的东西
03:52
it's invisible, you can't see it, but it's really critical.
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这种东西是无形的,你看不见, 但却非常重要
03:56
And that thing is called attention.
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这种东西就是所谓的注意力
03:58
And they learn soon enough,
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他们很快就能学会
04:00
even before they can utter one word,
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甚至在他们会开口说话前,他们转移自己的注意力
04:02
that they can take that attention and move somewhere
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以得到自己想要的东西
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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他们也会跟随着别人的目光
04:12
because whatever people are looking at is what they are thinking about.
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因为人的目光所到之处
就是他们心中所想
04:18
And soon enough, they start to learn about the meaning of things,
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很快地,他们开始了解事物的意义
因为当某个人看着一个东西
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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或指着一个东西时
交流的对方并不仅仅获得一个方向的信息
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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也获得了他人
对事物意义的理解以及态度
04:33
the attitude.
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04:34
And soon enough, they start building this body of meanings,
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很快地他们开始建立这个意义的系统
04:39
but meanings that were acquired within the realm of social interaction.
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但这一系统中意义
要求他们与人进行互动而获得
04:44
Those are meanings that are acquired
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这些意义
04:46
as part of their shared experiences with others.
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是通过他们与人分享自己的经验而得到的
04:50
Well, this is a 15-month-old little girl,
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有个15个月大的小女孩
她有自闭症
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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我靠她非常地近
大概离她的脸只有2英寸,她却完全不理睬我
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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想象一下我对你这么做,
离你的脸2英寸那么近
05:11
You'd do probably two things, wouldn't you?
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你很有可能会有种反应,对吧?
05:13
You would recoil. You would call the police.
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你可能会往后退,或者叫警察. (笑声)
05:16
(Laughter)
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05:17
You would do something,
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你一定会做点什么.
05:18
because it's literally impossible to penetrate somebody's physical space
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因为你进去了别人的空间
而不引起反应是不可能的.
05:23
and not get that reaction.
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05:24
We do so, remember, intuitively, effortlessly.
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对我们而言,这是自然而然,毫不费劲的.
05:27
This is our body wisdom;
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这是我们身体的智慧. 并不是语言教会我们的.
05:29
it's not something mediated by our language.
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我们的身体就是知道如何反应,
05:31
Our body just knows that.
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这是我们早就知道的事实.
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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不光是人类会有如此反应.
05:39
It happens to some of our phyletic cousins,
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对于我们进化上的远亲,也是如此
05:42
because if you're a monkey, and you look at another monkey,
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如果你是一只猴子
你正在看着另一只猴子
05:46
and that monkey has a higher hierarchy position than you,
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另一只猴子比你的等级更高
05:50
and that is considered to be a signal or threat,
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如果这被看成是一种信号或威胁,
05:54
well, you are not going to be alive for long.
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你是不会活很久的
05:57
So something that in other species are survival mechanisms,
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这对其他动物来说是不可缺少的生存技能
离开这些技能他们活不下去
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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而对于人类社会来说
06:07
and this is what we need to simply act, socially.
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我们就需要这样反应,互动性的反应
06:12
Now, she is oblivious to me and I'm so close to her,
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她那样地对我不理不睬,可我离她那么近
06:14
and you think, maybe she can see you,
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可能你觉得,她看得见你
06:16
maybe she can hear you.
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也许她听得到你
06:18
Well, a few minutes later,
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可是,几分钟以后, 她会走到屋子里的某个角落
06:20
she goes to the corner of the room,
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发现地上的小糖果,MM糖。
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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我根本吸引不了她的注意力
06:31
but something -- a thing -- did.
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但有的东西,某个小物件,却可以!
06:33
Now, most of us make a big dichotomy
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如今,大多数人都会将物的世界与人的世界
06:36
between the world of things and the world of people.
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分得一清二楚
06:40
Now, for this girl, that division line is not so clear,
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但是对这个自闭症女孩而言, 这个分割线却不是很清晰
06:45
and the world of people is not attracting her
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人的世界并不吸引她
06:48
as much as we would like.
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但却能吸引我们
06:50
Now, remember that we learn a great deal by sharing experiences.
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我们能从分享经验当中
学到很多东西
06:54
What she is doing right now is that her path of learning is diverging,
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但这个自闭症女孩所做的事情
使得她的学习方式越来越偏离正常的轨道,
07:00
moment by moment,
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07:02
as she is isolating herself further and further.
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因为她不断地封闭自己
07:05
So we feel sometimes that the brain is deterministic,
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有时候我们会觉得大脑是决定性的
07:08
the brain determines who we're going to be.
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它决定我们将要成为什么样的人
07:11
But, in fact, the brain also becomes who we are,
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但实际上大脑也会被我们的行为影响
07:14
and at the same time that her behaviors are taking away
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当她越来越孤僻
07:18
from the realm of social interaction,
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互动越来越少的时候
07:20
this is what's happening with her mind,
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她的思想和大脑也受到行为的影响
07:22
and this is what's happening with her brain.
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在所有成长障碍中,
07:27
Well, autism is the most strongly genetic condition
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07:32
of all developmental disorders.
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自闭症与基因的关系最大,
自闭症是脑部神经错乱引起的
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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这种紊乱在孩子早在出生之前
07:41
that the child is born.
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就开始形成了
07:44
We now know that there is a very broad spectrum of autism.
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我们现在知道自闭症有很多不同的种类
有很多自闭症患者有严重的智力障碍
07:48
There are those individuals who are profoundly intellectually disabled
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但也有很多天赋异禀
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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有的患者完全不讲话
又有的会一直说个不停
07:56
there are those individuals who talk too much.
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有的患者如果你到他们学校里去观察他们
07:58
There are those individuals that if you observe them in their school,
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他们会一直围着学校的围墙跑个不停
08:02
you see them running the periphery fence all the school day if you let them,
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如果你不阻止他们(他们会一直跑)
08:05
to those individuals who cannot stop coming to you
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有的人会一直不停地跑到你面前来
不断地想引起你的注意
08:08
and trying to engage you repeatedly, relentlessly,
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但他们的方式常有点奇怪
08:11
but often in an awkward fashion,
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从而无法引起你的共鸣
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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自闭症如今要更普遍得多,
08:21
When I started in this field,
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我刚开始进入这个领域时,
08:23
we thought there were four individuals with autism per 10,000 --
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我们以为一万个人里差不多有四个自闭症患者
因而,自闭症显得比较罕见
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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但现在我们知道,100个人里大概就有一个自闭症患者
08:31
There are millions of individuals with autism all around us.
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我们的身边有着数百万的患有自闭症的人
08:37
The societal cost of this condition is huge,
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社会为此而消耗的成本极大
08:40
in the US alone, maybe 35 to 80 billion dollars.
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仅美国这一花费大概就达到了350亿到800亿美元,
08:43
And you know what?
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大家知道么,这些经费的很大一部分
08:44
Most of those funds are associated with adolescents and particularly adults
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都被用在青少年,
08:49
who are severely disabled,
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尤其是那些患有严重障碍的成年人
08:51
individuals who need wraparound services --
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以及那些需要全方位密集照顾的患者身上
08:53
services that are very, very intensive.
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需要极为高强度的照顾
08:55
And those services can cost in excess of 60,000 to 80,000 dollars a year.
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这样的服务大概每年需要花费6万到8万美元
09:00
Those are individuals who did not benefit from early treatment,
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有的人没有获得早期的治疗
而我们知道,自闭症随着学习方式的不断偏离
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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而逐渐恶化
就像我刚才提过的那样
09:13
Were we to be able to identify this condition
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我们能否及早发现自闭症的症状
09:15
at an earlier point, and intervene and treat --
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进行干预与治疗呢?
09:19
I can tell you, this has been probably something that has changed my life
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我可以跟大家说,这个想法
在过去十年大大的改变了我的生活
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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我们完全可以
减轻自闭症的症状
09:30
Also, we have a window of opportunity,
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但是,我们的机会并不多
09:33
because the brain is malleable for just so long,
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因为大脑的可塑性只有那么一阵
09:36
and that window of opportunity happens in the first three years of life.
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而这为数不多的机会时间
是人生命的前三年
09:39
It's not that that window closes; it doesn't.
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这并不是说之后就没有机会了,不是这样的
但机会确实是越来越小
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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在美国,被诊断出自闭症的年龄
仍然在五岁左右
09:50
is still about five years,
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09:51
and in disadvantaged populations,
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但在一些贫困地区
或一些医疗条件不好的地区
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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农村人口以及少数族裔自闭症患者
10:00
the age of diagnosis is later still,
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被确诊的年龄还要滞后
这就好像我们要和他们说
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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那些社区的自闭症患情况
会越来越严重
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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所以我觉得我们在生物伦理上负有责任。
10:15
The science is there.
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技术已经有了
10:18
But no science is of relevance
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但技术如果无法对社区产生影响
10:20
if it doesn't have an impact on the community.
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那么技术也就不存在,我们若不抓住机会,
10:23
And we just can't afford that missed opportunity,
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后果将不是我们所能负担的。
10:26
because children with autism become adults with autism.
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因为自闭症孩子会变成患有自闭症的成人,
我们能为孩子们、为他们的家庭做的事情
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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如果早一点做到,
10:36
will have lifetime consequences --
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将会产生影响终身的作用,
不管是对孩子,还是对其家庭以及社区而言都是如此
10:39
for the child, for the family, and for the community at large.
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这就是我们对于自闭症的看法
10:43
So this is our view of autism.
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和自闭症有关的基因多达一百个
10:46
There are over a hundred genes that are associated with autism.
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实际上,我们相信,很有可能
10:49
In fact, we believe there are going to be
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将会有300到600个基因是与自闭症有关的
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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不仅仅是基因,而是基因异常
这时候我们遇到一个问题
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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既然有那么多引起自闭症的原因
11:06
how do you go from those liabilities to the actual syndrome?
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那我们可不可以根据这些异常基因
来追查具体的症状呢? 像我这样的人
11:11
Because people like myself,
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当我们进入一个游戏室时,
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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我们就能判断一个孩子是否有自闭症
11:18
So how do you go from multiple causes
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那要怎样从很多的形成原因中
追查一系列相似的症状呢?
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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答案就在成因与症状之间,
11:27
which is development.
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即孩子的成长
11:29
And in fact, we are very interested in those first two years of life,
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事实上,我们对孩子两岁前的生活非常感兴趣
因为那些不利因素
11:34
because those liabilities don't necessarily convert into autism.
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未必一定会演变成自闭症
11:38
Autism creates itself.
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自闭症会自行形成
11:40
Were we to be able to intervene during those years of life,
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我们能否在那些年里进行干预?
11:45
we might attenuate for some, and God knows, maybe even prevent for others.
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我们也许能减轻一些症状,谁知道呢!
也许还能阻止一些人得上自闭症
11:51
So how do we do that?
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那我们该怎么做呢?
11:53
How do we enter that feeling of resonance,
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我们怎么样能引起共鸣?
11:56
how do we enter another person's being?
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怎么样进入到别人的存在当中?
我记得当我和那个15个月大的孩子在一起互动时,
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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我脑子里只有一件事
12:06
"How do you come into her world?
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“怎么样才能进入到她的世界呢?“
”她是在想着我么?还是她正在想着别人?”
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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这很难做到,我们必须倚靠技术
12:16
so we had to create the technologies.
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我们必须到她身体内部的世界中去
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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我们要从她的眼睛看世界。
所以过去的很多年我们都在做一项技术
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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以眼球追踪为基础,
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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我们可以看到在每个不同的时刻,
孩子们都是被什么吸引了
这是我的同事,Warren Jones,
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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我们一起研究创造这些方法,
12:43
for the past 12 years.
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整整研究了12年,
12:44
And you see there a happy five-month-old,
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你看这是一个五个月大的婴儿
这个五月大的男孩将要去观看别的事物,
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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就是他世界里存在的事物,
12:56
his mom, the caregiver,
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他的妈妈,照顾他的人,还有一些
12:58
but also experiences that he would have were he to be in his daycare.
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他日间被照顾时的各种经历
13:03
What we want is to embrace that world and bring it into our laboratory,
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我们所要做的,就是拥抱他的世界,
并把那世界带到实验室来,
13:07
but in order for us to do that,
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但为了达到这个目的,
13:09
we had to create these very sophisticated measures,
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我们要创建很精密的测量方法,
测量人们以及婴儿
13:14
measures of how people, how little babies,
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13:17
how newborns, engage with the world, moment by moment.
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如何与世界互动的方法
每个时刻都要测量
从而知道什么是重要的,什么是不重要的
13:22
What is important and what is not.
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13:25
Well, we created those measures,
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我们创建了这些测量方法,
13:27
and here, what you see is what we call a funnel of attention.
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现在大家所看到的这个东西叫 “注意力漏斗”
13:31
You're watching a video --
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你们看到的这个视频
13:33
those frames are separated by about a second --
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每幅影像的间距大约是一秒
13:36
through the eyes of 35 typically developing two-year-olds.
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这是35个正常孩子所看到的世界
他们都是两岁大的孩子
13:40
And we freeze one frame,
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当我们停在其中一幅影像上时
13:43
and this is what the typical children are doing.
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这是正常的孩子在做的事情
13:47
In this scan pass, in green here, are two-year-olds with autism.
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而绿色的地方,是自闭症的孩子在做的事情
13:51
So on that frame, the children who are typical are watching this,
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视频停留在那个画面上时,
正常孩子在看这些,
13:58
the emotion of expression of that little boy
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再看那个小男孩情绪的反应
14:00
as he's fighting a little bit with the little girl.
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那个小男孩和那个小女孩正在闹矛盾
14:03
What are the children with autism doing?
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而自闭症的孩子在做什么呢?
14:05
They are focusing on the revolving door,
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他们会注意那个不断转动的门,
14:09
opening and shutting.
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看着门开了又关,关了又开
14:11
Well, I can tell you that this divergence that you're seeing here
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我可以告诉大家,
这里就有了差异,
14:14
doesn't happen only in our five-minute experiment.
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这不仅仅发生在我们5分钟的实验里
14:17
It happens moment by moment in their real lives,
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而在他们生活里的每一分钟都发生着,
14:21
and their minds are being formed and their brains are being specialized
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他们的心智就此而形成,
它们的脑子在其他的方面不断发展,
14:26
in something other than what is happening with their typical peers.
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而这些方面与他们同龄的伙伴有所不同
14:30
Well, we took a construct from our pediatrician friends,
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这里有一个结构图,
这是从我们的儿科医生朋友那里拿过来的,
这是一幅关于生长曲线概念的图,
14:37
the concept of growth charts --
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14:38
you know, when you take a child to the pediatrician,
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你知道,你带一个孩子去看儿科医生时,
你会得到他的身高,体重
14:41
and you have physical height and weight.
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14:45
Well, we decided we were going to create growth charts
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所以我们决定我们要作出一个
社交发展的成长图
14:48
of social engagement.
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14:50
We sought children from the time they're born.
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我们找了很多孩子参与实验,从他们出生开始
14:53
What you see here on the x-axis
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大家可以看到X轴上写着2,3,4,
14:56
is two, three, four, five, six months and nine,
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5,6,到9,一直到大概24个月
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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这些是他们盯着人的眼睛
15:05
that they're focusing on people's eyes,
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看的时间百分比,
15:07
and this is their growth chart.
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这就是他们的成长表
他们爱看人的眼睛,从这里开始,
15:10
They start over here -- they love people's eyes --
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15:12
and it remains quite stable.
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基本上很平稳,
15:15
It sort of goes up a little bit in those initial months.
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在最初的几个月里它还上升了一些.
15:19
Now, let's see what's happening with babies who became autistic.
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我们再来看看
这些有自闭症的孩子的曲线.
15:23
It's something very different.
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非常的不同
15:26
It starts way up here, but then it's a free fall.
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刚开始很高,然后就一直下降。
15:29
It's very much like they brought into this world the reflex
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这表明,他们本来具有追寻人眼神的能力
15:33
that orients them to people, but it has no traction.
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但后来却不再被吸引了
15:37
It's almost as if that stimulus -- you --
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这就是说,你,作为一个外界的刺激
15:40
you're not exerting influence on what happens
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你对他们产生不了影响了
15:43
as they navigate their daily lives.
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在他们探索日常生活的过程中你不无关紧要
15:47
Now, we thought those data were so powerful, in a way,
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这些数据如此重要,
以致于我们非常想知道在出生后的六个月里,
15:54
that we wanted to see what happened in the first six months of life,
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到底发生了什么,
15:57
because if you interact with a two- and a three-month-old,
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因为当你开始与一个两三个月大的孩子互动时,
你会对这些孩子的社会性感到惊讶
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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我们在那六个月看到了一个情况,
这两组孩子很容易被区分开来
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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通过这些方法或者其它的方法,
我们发现,实际上我们的科学,
16:17
what we found out is that our science could, in fact,
295
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16:20
identify this condition early on.
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是可以及早地诊断出自闭症的
16:23
We didn't have to wait for the behaviors of autism
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我们不需要等到第二年
16:26
to emerge in the second year of life.
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2079
自闭症的症状开始出现时才确诊
如果我们测量的东西是进化而来,
16:30
If we measured things that are, evolutionarily, highly conserved,
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并保存下来的,且出现的时间非常早的话,
16:34
and developmentally very early-emerging --
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16:37
things that are online from the first weeks of life --
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尤其是出生后几周就出现的症状,
16:39
we could push the detection of autism
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我们就可以将对其诊断提前到,
16:41
all the way to those first months,
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提早到出生后的两个月内,
16:44
and that's what we are doing now.
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这就使我们如今在研究的内容,
16:48
Now, we can create the very best technologies
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现在,我们可以创造出最好的科学技术,
16:51
and the very best methods to identify the children,
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还有最好的方法来争端那些患自闭症的孩子
但如果我们不能改变他们的现实情况,
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.
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这一切都徒劳无功.
17:01
Now we want those devices, of course,
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当然了,我们现在需要各种设备
17:03
to be deployed by those who are in the trenches --
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能被送到第一线的工作人员那里
17:06
our colleagues, the primary care physicians, who see every child --
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我们的同事,那些坐诊的医生,
他们能见到每个孩子,
17:12
and we need to transform those technologies
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我们需要把这些技术,
17:14
into something that is going to add value to their practice,
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转变成对他们的工作有实际用处和价值的东西,
17:17
because they have to see so many children.
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因为他们要帮助那么多孩子,
17:19
And we want to do that universally so that we don't miss any child.
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我们希望我们的成果能广泛推广,
这样我们就不会漏掉任何一个孩子,
17:23
But this would be immoral
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1611
但如果没有完善的基础设施,
17:26
if we also did not have an infrastructure for intervention, for treatment.
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和干预治疗的方法
那这也是违反这会责任与道德,
17:32
We need to be able to work with the families, support the families,
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我们需要能够与家庭合作,
去支持那些家庭,在最开始的几年里与他们一起,
17:36
to manage those first years with them.
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我们需要从诊断他们是否患病,
17:40
We need to be able to really go
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17:42
from universal screening to universal access to treatment,
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发展到普遍有效的治疗方法,
17:46
because those treatments are going to change
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因为这些治疗将会改变
17:49
these children's and those families' lives.
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孩子与他们家人的生活
现在,我们要想想我们能做些什么,
17:54
Now, when we think about what we [can] do in those first years,
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6438
我可以告诉大家,
18:00
I can tell you, having been in this field for so long,
325
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4570
在这个领域这么多年,
最开始的几年,
人会觉得自己很年轻充满干劲,
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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会感觉我自己所钻研的科学
真的能给现实带来影响,
18:13
can actually have an impact on realities,
328
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2769
18:16
preventing, in fact, those experiences
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可以让其他人不再重蹈我的覆辙
18:19
that I really started in my journey in this field.
330
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不走我走过的老路,
18:23
I thought at the time that this was an intractable condition.
331
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我那时以为自闭症是个无法治愈的疾病
18:26
No longer. We can do a great deal of things.
332
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但如今再也不这么想了。 我们可以做很多事情。
18:30
And the idea is not to cure autism.
333
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我们的想法并不是说要完全治愈自闭症。
18:33
That's not the idea.
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那不是我们要的。
18:35
What we want is to make sure
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我们要的,是要确认,
18:37
that those individuals with autism can be free
336
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2552
那些患了自闭症的人
18:40
from the devastating consequences that come with it at times,
337
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能从那些可怕的结果中释放出来,得到自由
18:44
the profound intellectual disabilities, the lack of language,
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不再是严重的智障,或者是语言能力的缺失,
18:47
the profound, profound isolation.
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也不再极度的封闭
18:51
We feel that individuals with autism, in fact,
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我们觉得实际上自闭症患者,
18:53
have a very special perspective on the world,
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看待世界的视角非常的特别,
18:56
and we need diversity.
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我们需要这样的多样性, 他们能做得特别好,
18:58
And they can work extremely well in some areas of strength:
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在一些他们擅长的领域,
19:02
predictable situations, situations that can be defined.
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在可预测的情况下,可掌控的情况下。
19:05
Because after all, they learn about the world
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毕竟他们专注于世界本来的面貌,
19:08
almost, like, about it,
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而不是学习怎样在世界上生存,
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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这就是一个长项。 例如,当你的工作在技术层面时
这就是一个长项。
19:18
And there are those individuals who have incredible artistic abilities.
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还有一些人,具有极高的天分
艺术上的天分
19:21
We want them to be free to do that.
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我们希望他们也能自由施展,
我们希望下一代患有自闭症的人
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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不仅能发挥他们的长处,
19:30
but to fulfill their promise.
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更能实现他们美好的梦想。
19:32
Well, thank you for listening to me.
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谢谢(掌声)
19:34
(Applause)
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