字幕表 動画を再生する
Translator: Joseph Geni Reviewer: Morton Bast
翻訳: Mami Kawade 校正: Ayumi Narita
I always wanted to become a walking laboratory of social engagement:
いつも思っていました
to resonate other people's feelings, thoughts, intentions, motivations,
社会につながる活動を 実地に研究し
in the act of being with them.
人々に寄り添い その感情や思考-
As a scientist, I always wanted to measure that resonance,
意思 欲求に共感したいと
that sense of the other that happens so quickly,
科学者としては ずっと その共感を測定したいと願っていました
in the blink of an eye.
「他者と共にいる」という-
We intuit other people's feelings;
瞬時に生まれる感覚
we know the meaning of their actions even before they happen.
人の気持ちは直感でわかります
We're always in this stance
人の行為の意味は
of being the object of somebody else's subjectivity.
あらかじめ わかってしまいます
We do that all the time. We just can't shake it off.
我々は常に
It's so important that the very tools we use to understand ourselves,
他者の主観の対象という立場に置かれています
to understand the world around us,
途切れることなく 避けることもできません
are shaped by that stance.
大変重要なことで
We are social to the core.
自分や周りの世界を-
So my journey in autism really started
理解する手段はまさにその立場から形づくられます
when I lived in a residential unit for adults with autism.
人は 骨の髄まで 社会的です
Most of those individuals had spent most of their lives
自閉症の探求の出発点は
in long-stay hospitals.
成人の自閉症者用の施設でした
This is a long time ago.
昔の事ですが そこの人達は
And for them, autism was devastating.
人生の大半を 病院で過ごしてきた人ばかり
They had profound intellectual disabilities.
彼らにとって 自閉症は 災いでした
They didn't talk.
深刻な知的障害を持ち
But most of all,
口も利けない でも最悪なのは-
they were extraordinarily isolated from the world around them,
極めて孤立していたこと
from their environment
自分たちを取り巻く 世界や環境や
and from the people.
人から孤立しているのです
In fact, at the time, if you walked into a school
当時の自閉症者の学校は
for individuals with autism,
騒がしく 落ち着きがなくて
you'd hear a lot of noise,
何かしている人がいても その人達は決まって
plenty of commotion, actions, people doing things.
独りぼっちでした
But they're always doing things by themselves.
天井の照明を見つめたり
So they may be looking at a light in the ceiling,
部屋の隅に引きこもったり
or they may be isolated in the corner,
何の意味もない 自己刺激運動を
or they might be engaged in these repetitive movements,
延々と繰り返すのに 夢中だったり
in self-stimulatory movements that led them nowhere.
非常に根の深い孤立です
Extremely, extremely isolated.
自閉症とは このように
Well, now we know that autism is this disruption,
他者への共感が 断絶した状態だと
the disruption of this resonance that I am telling you about.
今は分かっています
These are survival skills.
共感は 数十万年の
These are survival skills that we inherited
進化の歴史の中で
over many, many hundreds of thousands of years of evolution.
人類が受け継いできた
You see, babies are born in a state of utter fragility.
生存の為の知恵です
Without the caregiver, they wouldn't survive,
赤ん坊は無力なので 生き延びるには 誰かに-
so it stands to reason that nature would endow them
世話をしてもらいます
with these mechanisms of survival.
彼らに共感能力が
They orient to the caregiver.
あるのは自然な事なのです
From the first days and weeks of life,
赤ん坊は世話をする人の方を向きます
babies prefer to hear human sounds,
産まれた日や最初の数週間から
rather than just sounds in the environment.
ただの物音より 人の立てる音を
They prefer to look at people rather than at things,
好むのです
and even as they're looking at people, they look at people's eyes,
彼らは物よりも
because the eye is the window to the other person's experiences,
人を見るのを好み
so much so that they even prefer to look at people
特に人の目を見つめます
who are looking at them rather than people who are looking away.
目は 他人の経験に通じる 窓だからです
Well, they orient to the caregiver.
だから 彼らは
The caregiver seeks the baby.
自分を見ている人の事を 見るのです
And it's out of this mutually reinforcing choreography
世話をする人を
that a lot that is of importance to the emergence of mind --
その逆も言えます
the social mind, the social brain -- depends on.
互いに与えあう このダンスこそ
We always think about autism
社会的な精神 頭脳が
as something that happens later on in life.
誕生するのに 極めて重要な事なのです
It doesn't; it begins with the beginning of life.
自閉症は
As babies engage with caregivers, they soon realize that, well,
もっと大きくなってから発症するものと 考えられてきましたが
there is something between the ears that is very important --
それは間違いです 生まれつきのものなのです
it's invisible, you can't see it, but it's really critical.
世話をする人と交流し 赤ん坊は気付く
And that thing is called attention.
「両耳の間には何かがあるな」
And they learn soon enough,
重要なもの
even before they can utter one word,
目には見えないが とても大事なもの
that they can take that attention and move somewhere
「注目」です
in order to get things they want.
赤ん坊はたちどころに学びます
They also learn to follow other people's gazes,
言葉を話す前から
because whatever people are looking at is what they are thinking about.
欲しいものを得るには この「注目」をとらえて動かせばいいのです
And soon enough, they start to learn about the meaning of things,
人の視線を追う事も学ぶ
because when somebody is looking at something
人が見る物 それは
or somebody is pointing at something,
頭に思い浮かべている物ですから
they're not just getting a directional cue.
そしてすぐ 物の意味を
They are getting the other person's meaning of that thing,
学び始めます 何故なら 人は-
the attitude.
何かを見たり指差す時
And soon enough, they start building this body of meanings,
ただ方向を示すだけでなく
but meanings that were acquired within the realm of social interaction.
その物が持つ意味を
Those are meanings that are acquired
他人に対して示しているからです
as part of their shared experiences with others.
赤ん坊はすぐ この意味のシステムを築き始めます
Well, this is a 15-month-old little girl,
でも 交流なしには
and she has autism.
「意味」を学ぶことはできません
And I am coming so close to her that I am maybe two inches from her face,
体験を共有して
and she's quite oblivious to me.
初めて 物の「意味」を 学ぶ事ができるのです
Imagine if I did that to you, came two inches from your face.
この小さな女の子は 1歳3カ月で
You'd do probably two things, wouldn't you?
自閉症です
You would recoil. You would call the police.
顔から5センチまで 近づいても
(Laughter)
全然私に気付いていません
You would do something,
もし5センチまで
because it's literally impossible to penetrate somebody's physical space
顔を近づけられたらどうします?
and not get that reaction.
たぶん 二つに一つ
We do so, remember, intuitively, effortlessly.
後ずさりするか 警察を呼ぶか (笑)
This is our body wisdom;
何かはするでしょう
it's not something mediated by our language.
領域を侵されると 人は
Our body just knows that.
必ず反応するのです
And we've known that for a long time.
本能的に 自然に そうするのです
And this is not something that happens to humans only.
これは体の働き
It happens to some of our phyletic cousins,
言葉に関係なく 体はそう動くものです
because if you're a monkey, and you look at another monkey,
ずっと昔からそうなのです
and that monkey has a higher hierarchy position than you,
人間だけではありません
and that is considered to be a signal or threat,
人間に近い動物たちもです
well, you are not going to be alive for long.
あなたが猿で
So something that in other species are survival mechanisms,
他の猿を見ていて
without which they wouldn't basically live,
その猿があなたより 地位が高ければ
we bring into the context of human beings,
合図 または威嚇とみなされ
and this is what we need to simply act, socially.
あなたの命はそこまでです
Now, she is oblivious to me and I'm so close to her,
他の動物にとっては不可欠の-
and you think, maybe she can see you,
生き残る為の知恵ですが
maybe she can hear you.
人間にとっては単に
Well, a few minutes later,
社会的活動に必要な事 というだけです
she goes to the corner of the room,
こんな近くにいれば
and she finds a tiny little piece of candy, an M&M.
私が見えたり
So I could not attract her attention,
声が聞こえたりすると思います
but something -- a thing -- did.
数分後 この子は
Now, most of us make a big dichotomy
部屋の隅に行き ちっちゃなキャンディを見つけます
between the world of things and the world of people.
彼女の「注意」は私には向かなくても
Now, for this girl, that division line is not so clear,
何か物には向くのです
and the world of people is not attracting her
ほとんどの人にとって
as much as we would like.
「物の世界」と「人の世界」があります
Now, remember that we learn a great deal by sharing experiences.
この子にとって その境界は 定かでなく
What she is doing right now is that her path of learning is diverging,
人の世界に対する興味は 期待されるほど
moment by moment,
強くありません
as she is isolating herself further and further.
「体験の共有」を通じて
So we feel sometimes that the brain is deterministic,
人は多くを学ぶことを思い出してください
the brain determines who we're going to be.
彼女が今のように 自分の中に
But, in fact, the brain also becomes who we are,
閉じこもれば閉じこもるほど
and at the same time that her behaviors are taking away
学びの道からどんどん 外れていくのです
from the realm of social interaction,
脳の将来の姿は決まっていて
this is what's happening with her mind,
その脳がどんな人になるか決めると思いがちです
and this is what's happening with her brain.
実は脳も私達自身になる
Well, autism is the most strongly genetic condition
この子の行動が 社会的交流から
of all developmental disorders.
切り離される時 精神や脳にも
And it's a brain disorder.
そういう事が起こっているのです
It's a disorder that begins much prior to the time
自閉症は あらゆる発達障害の中で 一番強く
that the child is born.
遺伝的条件に支配されるものであり
We now know that there is a very broad spectrum of autism.
脳の障害なのです
There are those individuals who are profoundly intellectually disabled
子供が生まれるより
but there are those that are gifted.
ずっと前から始まっています
There are those individuals who don't talk at all;
自閉症スペクトラムは 幅広く
there are those individuals who talk too much.
重い知的障害の人も
There are those individuals that if you observe them in their school,
才能のある人もいます
you see them running the periphery fence all the school day if you let them,
全く口を利かない人
to those individuals who cannot stop coming to you
しゃべりすぎる人も
and trying to engage you repeatedly, relentlessly,
止められなければ
but often in an awkward fashion,
学校のフェンス沿いに一日中
without that immediate resonance.
走っている人もいます
Well, this is much more prevalent than we thought at the time.
人のところに来て
When I started in this field,
繰り返し 執拗に
we thought there were four individuals with autism per 10,000 --
気を惹こうとするけれど
a very rare condition.
他人の心をはかり知ることができない人も います
Well, now we know it's more like one in 100.
かつて思われたよりも症状を持つ人は ずっとたくさんいました
There are millions of individuals with autism all around us.
この分野で働き始めたとき自閉症は稀で-
The societal cost of this condition is huge,
1万人中4人程度だと
in the US alone, maybe 35 to 80 billion dollars.
考えられていました
And you know what?
現在の研究では 割合は100人中1人
Most of those funds are associated with adolescents and particularly adults
数百万の自閉症者がいる 計算になります
who are severely disabled,
関連する社会保障費は 莫大で
individuals who need wraparound services --
米国だけで350~800億ドル
services that are very, very intensive.
この費用の大半は
And those services can cost in excess of 60,000 to 80,000 dollars a year.
深刻な障害を持ち
Those are individuals who did not benefit from early treatment,
総合的で徹底的な
because now we know that autism creates itself
ケアを必要とする
as individuals diverge in that pathway of learning that I mentioned to you.
若者や大人のための
Were we to be able to identify this condition
一年で6~8万ドルかかる ケアです
at an earlier point, and intervene and treat --
早期療育の恩恵にあずからなかった 人たちです
I can tell you, this has been probably something that has changed my life
お話した通り 自閉症は 学習の道筋から
in the past 10 years,
逸れていくことで 重症化すると
this notion that we can absolutely attenuate this condition.
判明しています
Also, we have a window of opportunity,
もし 早い段階で
because the brain is malleable for just so long,
症状に気付き 療育を受けさせるとどうなるか
and that window of opportunity happens in the first three years of life.
ここ10年の 私の人生に
It's not that that window closes; it doesn't.
影響を与えた事なのですが
But it diminishes considerably.
早期療育によって 我々は症状を-
And yet, the median age of diagnosis in this country
軽減できるのです
is still about five years,
チャンスはあります
and in disadvantaged populations,
脳が柔軟な時期は 充分長い
the populations that don't have access to clinical services,
産まれてから3歳までが
rural populations, minorities,
その時期です
the age of diagnosis is later still,
その後も改善の可能性は 閉ざされません
which is almost as if I were to tell you
ただ効果は大幅に減るのです
that we are condemning those communities to have individuals with autism
米国で自閉症と診断される-
whose condition is going to be more severe.
平均年齢は5歳
So I feel that we have a bioethical imperative.
田舎に住む人や
The science is there.
マイノリティーは 医療サービスを受けにくく
But no science is of relevance
診断される年齢は更に上がります
if it doesn't have an impact on the community.
こんなことを言うとまるで
And we just can't afford that missed opportunity,
そういうコミュニティーに対して
because children with autism become adults with autism.
自閉症の人がいて
And we feel that those things we can do
その症状はこれから さらに悪化すると告げているみたいです
for these children, for those families, early on,
生命倫理上 責任を感じます
will have lifetime consequences --
科学の存在は
for the child, for the family, and for the community at large.
社会の役に立たなければ意味がない
So this is our view of autism.
だから私達は 療育のチャンスを
There are over a hundred genes that are associated with autism.
逃してはならない
In fact, we believe there are going to be
成長しても彼らは自閉症です
something between 300 and 600 genes associated with autism,
この子達や その家族の為 もっと早くに-
and genetic anomalies, much more than just genes.
何かできたなら
And we actually have a bit of a question here,
子どもや家族や地域には
because if there are so many different causes of autism,
決定的な変化が起こるでしょう
how do you go from those liabilities to the actual syndrome?
これが我々の見解です
Because people like myself,
自閉症に関連する遺伝子は
when we walk into a playroom,
現在100を超え
we recognize a child as having autism.
やがてその数は 300~600になると
So how do you go from multiple causes
信じられています
to a syndrome that has some homogeneity?
ここで疑問が一つ 出てきます
And the answer is what lies in between,
自閉症の原因因子が 数多いなら
which is development.
それらの障害からどのようにして
And in fact, we are very interested in those first two years of life,
実際の症候群になるのでしょうか
because those liabilities don't necessarily convert into autism.
専門家は遊び場に行けば
Autism creates itself.
自閉症の子が見分けられます
Were we to be able to intervene during those years of life,
数ある原因因子から-
we might attenuate for some, and God knows, maybe even prevent for others.
共通点のある症候群が発生するのはなぜか
So how do we do that?
因子と症候群を結ぶ物
How do we enter that feeling of resonance,
それは発達です
how do we enter another person's being?
因子は必ずしも自閉症へと
I remember when I interacted with that 15-month-old,
発展するわけではないので
the thing that came to my mind was,
2歳になるまでが重要なのです
"How do you come into her world?
自閉症は自己強化します
Is she thinking about me? Is she thinking about others?"
2歳になる前に診断・療育等 医療が介入できれば
Well, it's hard to do that,
症状を緩和したり
so we had to create the technologies.
未然に防ぐ事さえ可能かもしれません
We had to basically step inside a body.
でもどうすればよいのでしょうか
We had to see the world through her eyes.
どうすれば 彼らの感情を呼び覚まし
And so in the past many years,
他者に共感させることができるでしょうか
we've been building these new technologies
先程の15か月の女の子とふれあった時も
that are based on eye tracking.
彼女の身になって
We can see, moment by moment, what children are engaging with.
考えるのは難しいことでした
This is my colleague, Warren Jones,
「彼女は私や他人の事を 考えるのか?」と
with whom we've been building these methods, these studies,
だから方法を編み出しました
for the past 12 years.
要するに彼女の中に入りこんで
And you see there a happy five-month-old,
彼女の目で世界を見られれば良いのです
a five-month little boy who is going to watch things
視線を追いかける新技術を
that are brought from his world:
長い年月をかけて開発しました
his mom, the caregiver,
子供が何に注目しているのか
but also experiences that he would have were he to be in his daycare.
秒単位で見る事ができます
What we want is to embrace that world and bring it into our laboratory,
同僚のウォレンと私は
but in order for us to do that,
開発に12年かけました
we had to create these very sophisticated measures,
この生後5か月の赤ん坊は
measures of how people, how little babies,
母親や周りの人々等
how newborns, engage with the world, moment by moment.
彼の世界にあるものを 見ています
What is important and what is not.
でも彼はそれだけではなく
Well, we created those measures,
託児所で経験する事も
and here, what you see is what we call a funnel of attention.
目にするのです
You're watching a video --
我々はその世界を捉えて 研究室に
those frames are separated by about a second --
持っていきたい
through the eyes of 35 typically developing two-year-olds.
その為には
And we freeze one frame,
非常に精緻な技術が必要でした
and this is what the typical children are doing.
大人や幼児 新生児達が
In this scan pass, in green here, are two-year-olds with autism.
世界にどう注目するのか
So on that frame, the children who are typical are watching this,
刻々ととらえます
the emotion of expression of that little boy
何が重要で 何が重要でないか
as he's fighting a little bit with the little girl.
それを示す指標を作りました
What are the children with autism doing?
「注目のじょうご」と呼びます
They are focusing on the revolving door,
自閉症でない2歳児に
opening and shutting.
フレームが約1秒区切りの-
Well, I can tell you that this divergence that you're seeing here
ビデオを見せた時の目の動きです
doesn't happen only in our five-minute experiment.
フレームを
It happens moment by moment in their real lives,
停止すると そういう子達は
and their minds are being formed and their brains are being specialized
目をこう動かします
in something other than what is happening with their typical peers.
緑色の部分は 自閉症の子です
Well, we took a construct from our pediatrician friends,
つまり 自閉症でない子が
the concept of growth charts --
フレームの中に見るのは
you know, when you take a child to the pediatrician,
女の子とけんか中の-
and you have physical height and weight.
男の子の感情表現ですが
Well, we decided we were going to create growth charts
自閉症の子はと言うと
of social engagement.
回転ドアが開閉する様子に
We sought children from the time they're born.
注目しています
What you see here on the x-axis
今 お見せした
is two, three, four, five, six months and nine,
違いは
until about the age of 24 months.
この実験中だけでなく
This is the percent of their viewing time
生活の中で常に発生しています
that they're focusing on people's eyes,
そして彼らの精神と脳は
and this is their growth chart.
自閉症でない人の精神や脳とは
They start over here -- they love people's eyes --
異なるものになるのです
and it remains quite stable.
小児科の友人から
It sort of goes up a little bit in those initial months.
「発育曲線」の概念を
Now, let's see what's happening with babies who became autistic.
拝借しました
It's something very different.
小児科では 子供の
It starts way up here, but then it's a free fall.
身長・体重を 曲線に表す事ができます
It's very much like they brought into this world the reflex
我々は社会との関わりを
that orients them to people, but it has no traction.
曲線にするのです
It's almost as if that stimulus -- you --
誕生時から観察を始めます
you're not exerting influence on what happens
横軸は月齢です 2か月、3か月、4か月、5か月、
as they navigate their daily lives.
6か月、と 大体24か月まで続けます
Now, we thought those data were so powerful, in a way,
縦軸は子供が人の目を
that we wanted to see what happened in the first six months of life,
見つめた時間の割合です
because if you interact with a two- and a three-month-old,
これがその発育曲線
you'd be surprised by how social those babies are.
始まりはここ 人の目が好きで
And what we see in the first six months of life
それはほぼ変わりません
is that those two groups can be segregated very easily.
最初の数か月は わずかに上昇するようです
And using these kinds of measures and many others,
自閉症の症状がある
what we found out is that our science could, in fact,
子供達の場合は
identify this condition early on.
全く違う曲線になる
We didn't have to wait for the behaviors of autism
始まりはここですが 急激に下降する
to emerge in the second year of life.
生まれつきの反射で 人を見ますが
If we measured things that are, evolutionarily, highly conserved,
そこには 惹きつけられません
and developmentally very early-emerging --
あなたがいたからといって
things that are online from the first weeks of life --
彼らが日常生活を送る中での
we could push the detection of autism
出来事には影響しないのです
all the way to those first months,
こんなにはっきりしたデータが得られるなら
and that's what we are doing now.
生後6か月経過するまでに
Now, we can create the very best technologies
何が起きるのか見てみたいと考えました
and the very best methods to identify the children,
2~3か月の子は
but this would be for naught if we didn't have an impact
驚くほど社交的なものですから
on what happens in their reality in the community.
生後6か月未満の子どもでも
Now we want those devices, of course,
自閉症とそうでないグループは とても簡単に区別できます
to be deployed by those who are in the trenches --
この種の評価法を使い
our colleagues, the primary care physicians, who see every child --
我々の科学的手法で実際に 自閉症の症状を
and we need to transform those technologies
早期に特定できるとわかりました
into something that is going to add value to their practice,
自閉症特有の行動が現れる-
because they have to see so many children.
1歳以後まで待つ必要もありません
And we want to do that universally so that we don't miss any child.
進化によって高度に保持され 発達の面では
But this would be immoral
生後数週間という 極めて早い段階から
if we also did not have an infrastructure for intervention, for treatment.
現れてくる徴候を計測すれば
We need to be able to work with the families, support the families,
自閉症の発見を
to manage those first years with them.
生後数か月まで 早める事ができるでしょう
We need to be able to really go
今取り組んでいることです
from universal screening to universal access to treatment,
子供達の自閉症診断の為の
because those treatments are going to change
最も適した技術と方法の 完成です
these children's and those families' lives.
でも 彼らの社会生活に
Now, when we think about what we [can] do in those first years,
変化がなければ無駄になります
I can tell you, having been in this field for so long,
勿論 この診断法を
one feels really rejuvenated.
最前線にいる人々 つまり-
There is a sense that the science that one worked on
あらゆる子供に会う-
can actually have an impact on realities,
かかりつけ医に 実践してほしいと願います
preventing, in fact, those experiences
この技術を活かし
that I really started in my journey in this field.
多くの子供に会う彼らの
I thought at the time that this was an intractable condition.
診断の価値を高めなければなりません
No longer. We can do a great deal of things.
見逃がしのないよう
And the idea is not to cure autism.
徹底してほしいのです
That's not the idea.
ただ 介入し治療するための-
What we want is to make sure
環境が整っていなければ この診断はモラルに
that those individuals with autism can be free
反します
from the devastating consequences that come with it at times,
必要なのは 自閉症児の-
the profound intellectual disabilities, the lack of language,
家族を助け 最初の数年を乗り切る事
the profound, profound isolation.
「誰でも診断を受けられる」 から
We feel that individuals with autism, in fact,
「誰でも治療を受けられる」 まで進めるべきです
have a very special perspective on the world,
療育は自閉症児だけでなく
and we need diversity.
家族の人生も 変えるのですから
And they can work extremely well in some areas of strength:
研究の初期にできなかった いろいろなことを
predictable situations, situations that can be defined.
振り返ってみると
Because after all, they learn about the world
こう思います
almost, like, about it,
長年続けてきたことで
rather than learning how to function in it.
この分野は盛んになってきたと感じます
But this is a strength if you're working, for example, in technology.
取り組んできた科学を基に
And there are those individuals who have incredible artistic abilities.
状況を変えられるようになったという 手ごたえもあります
We want them to be free to do that.
自閉症に関わり始めた頃のように
We want that the next generations of individuals with autism
どうする事もできない状態だなどと
will be able not only to express their strengths,
感じることははなくなりました
but to fulfill their promise.
状況は変化し 多くの事が可能になりました
Well, thank you for listening to me.
「自閉症を治す」という
(Applause)
考え方ではありません