Ami Klin: A new way to diagnose autism

アミ・クリン: 自閉症　新たな診断法

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

社会につながる活動を 実地に研究し

人々に寄り添い その感情や思考―

to resonate other people's feelings, thoughts, intentions, motivations,

意思 欲求に共感したいと

in the act of being with them.

As a scientist, I always wanted to measure that resonance,

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

that sense of the other that happens so quickly,

｢他者と共にいる」という―

in the blink of an eye.

瞬時に生まれる感覚

We intuit other people's feelings;

人の気持ちは直感でわかります

we know the meaning of their actions even before they happen.

人の行為の意味は

それが起こる前に 分かってしまいます

We're always in this stance

我々は常に

of being the object of somebody else's subjectivity.

他者の主観の対象という立場に置かれています

We do that all the time. We just can't shake it off.

途切れることなく 避けることもできません

It's so important that the very tools we use to understand ourselves,

大変重要なことで

自分や周りの世界を―

to understand the world around us,

理解する手段はまさにその立場から形づくられます

are shaped by that stance.

We are social to the core.

人は 骨の髄まで 社会的です

So my journey in autism really started

自閉症の探求の出発点は

when I lived in a residential unit for adults with autism.

成人の自閉症者用の施設でした

昔の事ですが そこの人達は

Most of those individuals had spent most of their lives

in long-stay hospitals.

人生の大半を 病院で過ごしてきた人ばかり

This is a long time ago.

And for them, autism was devastating.

彼らにとって 自閉症は 人生を荒廃させるものでした

They had profound intellectual disabilities.

深刻な知的障害を持ち

They didn't talk.

口も利けない でも最悪なのは―

But most of all,

極めて孤立していたこと

they were extraordinarily isolated from the world around them,

自分たちを取り巻く 世界や環境や

from their environment

人から孤立しているのです

and from the people.

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,

plenty of commotion, actions, people doing things.

何かしている人がいても その人達は決まって

But they're always doing things by themselves.

独りぼっちでした

So they may be looking at a light in the ceiling,

天井の照明を見つめたり

or they may be isolated in the corner,

部屋の隅に引きこもったり

or they might be engaged in these repetitive movements,

何の意味もない 自己刺激運動の

in self-stimulatory movements that led them nowhere.

繰り返しに とりつかれたり

Extremely, extremely isolated.

非常に根の深い孤立です

Well, now we know that autism is this disruption,

自閉症とは このように

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 数十万年にわたって

These are survival skills that we inherited

進化の歴史の中で

人類が受け継いできた

over many, many hundreds of thousands of years of evolution.

生存の為の能力です

You see, babies are born in a state of utter fragility.

赤ん坊は無力なので 生き延びるには 誰かに―

Without the caregiver, they wouldn't survive,

世話をしてもらいます

so it stands to reason that nature would endow them

彼らに生存の仕組みが

with these mechanisms of survival.

備わっているのは自然な事なのです

赤ん坊は世話をする人の方を向きます

They orient to the caregiver.

From the first days and weeks of life,

生まれた日や最初の数週間から

babies prefer to hear human sounds,

ただの物音より 人の立てる音を

rather than just sounds in the environment.

好むのです

They prefer to look at people rather than at things,

彼らは物よりも

and even as they're looking at people, they look at people's eyes,

人を見るのを好み

特に人の目を見つめます

because the eye is the window to the other person's experiences,

目は 相手の経験に通じる 窓だからです

so much so that they even prefer to look at people

だから 彼らは

who are looking at them rather than people who are looking away.

自分を見ている人の事を 見るのです

Well, they orient to the caregiver.

世話をする人をです

The caregiver seeks the baby.

世話をする人の対象は赤ん坊です

And it's out of this mutually reinforcing choreography

互いに強めあう このダンスこそ

that a lot that is of importance to the emergence of mind --

社会的な精神 頭脳が依存する 心の誕生に

the social mind, the social brain -- depends on.

極めて重要な事なのです

We always think about autism

自閉症は

as something that happens later on in life.

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

It doesn't; it begins with the beginning of life.

それは間違いです 生まれた時から始まります

As babies engage with caregivers, they soon realize that, well,

世話をする人と交流し 赤ん坊は気付きます

「両耳の間（脳）には何かがあるな」

there is something between the ears that is very important --

重要なもの

it's invisible, you can't see it, but it's really critical.

目には見えないが とても大事なもの

And that thing is called attention.

｢注目｣です

And they learn soon enough,

赤ん坊はたちどころに学びます

even before they can utter one word,

言葉を話す前から

that they can take that attention and move somewhere

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

in order to get things they want.

They also learn to follow other people's gazes,

人の視線を追う事も学びます

because whatever people are looking at is what they are thinking about.

人が見る物 それは

頭に思い浮かべている物ですから

And soon enough, they start to learn about the meaning of things,

そしてすぐ 物の意味を

学び始めます 何故なら 人は―

because when somebody is looking at something

or somebody is pointing at something,

何かを見たり指差す時

ただ方向を示すだけでなく

they're not just getting a directional cue.

They are getting the other person's meaning of that thing,

その物が持つ意味を

他人に対して示しているからです

the attitude.

And soon enough, they start building this body of meanings,

赤ん坊はすぐ この意味の体系を築き始めます

but meanings that were acquired within the realm of social interaction.

でも 社会的交流の範囲で得られた 「意味」に限られます

Those are meanings that are acquired

体験を共有して

as part of their shared experiences with others.

初めて 物の｢意味｣を 学ぶ事ができるのです

Well, this is a 15-month-old little girl,

この小さな女の子は 1歳3カ月で

自閉症です

and she has autism.

And I am coming so close to her that I am maybe two inches from her face,

顔から5センチまで 近づいても

全然私に気付いていません

and she's quite oblivious to me.

Imagine if I did that to you, came two inches from your face.

もし5センチまで

顔を近づけられたらどうします？

You'd do probably two things, wouldn't you?

たぶん 二つに一つ

You would recoil. You would call the police.

後ずさりするか 警察を呼ぶか (笑)

(Laughter)

You would do something,

何かはするでしょう

because it's literally impossible to penetrate somebody's physical space

領域を侵されると 人は

必ず反応するのです

and not get that reaction.

We do so, remember, intuitively, effortlessly.

本能的に 自然に そうするのです

This is our body wisdom;

これは体の持つ知恵

it's not something mediated by our language.

言葉を媒介せずに 体はそう動くものです

Our body just knows that.

ずっと昔からそうなのです

And we've known that for a long time.

And this is not something that happens to humans only.

人間だけではありません

It happens to some of our phyletic cousins,

人間に近い動物たちもです

because if you're a monkey, and you look at another monkey,

あなたが猿で

他の猿を見ていて

and that monkey has a higher hierarchy position than you,

その猿があなたより 地位が高ければ

and that is considered to be a signal or threat,

合図 または威嚇とみなされ

well, you are not going to be alive for long.

あなたの命はそこまでです

So something that in other species are survival mechanisms,

他の動物にとっては不可欠の－

生き残る為の知恵ですが

without which they wouldn't basically live,

we bring into the context of human beings,

人間にとっては単に

and this is what we need to simply act, socially.

社会的活動に必要な事 というだけです

Now, she is oblivious to me and I'm so close to her,

こんな近くにいれば

and you think, maybe she can see you,

私が見えたり

maybe she can hear you.

声が聞こえたりすると思います

Well, a few minutes later,

数分後 この子は

she goes to the corner of the room,

部屋の隅に行き ちっちゃなキャンディを見つけます

and she finds a tiny little piece of candy, an M&M.

So I could not attract her attention,

彼女の「注意」は私には向かなくても

but something -- a thing -- did.

何か物には向くのです

Now, most of us make a big dichotomy

ほとんどの人にとって

between the world of things and the world of people.

｢物の世界｣と｢人の世界」があります

Now, for this girl, that division line is not so clear,

この子にとって その境界は 定かでなく

and the world of people is not attracting her

人の世界に対する興味は 期待されるほど

as much as we would like.

強くありません

Now, remember that we learn a great deal by sharing experiences.

｢体験の共有」を通じて

人は多くを学ぶことを思い出してください

What she is doing right now is that her path of learning is diverging,

彼女が今のように 自分の中に

閉じこもれば閉じこもるほど

moment by moment,

as she is isolating herself further and further.

学びの道からどんどん 外れていくのです

So we feel sometimes that the brain is deterministic,

脳は決定論的な役割を持っていて

the brain determines who we're going to be.

脳がどんな人になるか 予め決定すると思いがちです

But, in fact, the brain also becomes who we are,

しかし 実は 脳も成長するのです

and at the same time that her behaviors are taking away

この子の行動が 社会的交流から

from the realm of social interaction,

切り離される時 精神や脳にも

this is what's happening with her mind,

そういう事が起こっているのです

and this is what's happening with her brain.

自閉症は あらゆる発達障害の中で 一番強く

Well, autism is the most strongly genetic condition

of all developmental disorders.

遺伝的条件に支配されるものであり

脳の障害なのです

And it's a brain disorder.

It's a disorder that begins much prior to the time

子供が生まれるより

that the child is born.

ずっと前から始まっています

We now know that there is a very broad spectrum of autism.

自閉症スペクトラムは 非常に幅広く

重い知的障害の人も

There are those individuals who are profoundly intellectually disabled

才能のある人もいます

but there are those that are gifted.

There are those individuals who don't talk at all;

全く口を利かない人

しゃべりすぎる人も

there are those individuals who talk too much.

やらせておけば

There are those individuals that if you observe them in their school,

学校のフェンス沿いに一日中

you see them running the periphery fence all the school day if you let them,

走っている人もいます

to those individuals who cannot stop coming to you

人のところに来て

繰り返し 執拗に

and trying to engage you repeatedly, relentlessly,

気を惹こうとするけれど

but often in an awkward fashion,

即座には共感を得られない人もいます

without that immediate resonance.

Well, this is much more prevalent than we thought at the time.

かつて思われていたよりも 症状を持つ人はずっとたくさんいます

When I started in this field,

この分野で働き始めたとき自閉症は稀で－

we thought there were four individuals with autism per 10,000 --

1万人中4人程度だと

考えられていました

a very rare condition.

Well, now we know it's more like one in 100.

現在の研究では 割合は100人中1人

There are millions of individuals with autism all around us.

数百万の自閉症者がいる 計算になります

The societal cost of this condition is huge,

この疾患に関連した 社会の損失は莫大で

in the US alone, maybe 35 to 80 billion dollars.

米国だけで350～800億ドル

And you know what?

この費用の大半は

Most of those funds are associated with adolescents and particularly adults

深刻な障害を持ち

who are severely disabled,

総合的で徹底的な

individuals who need wraparound services --

ケアを必要とする

services that are very, very intensive.

若者や大人のための

And those services can cost in excess of 60,000 to 80,000 dollars a year.

一年で6～8万ドルかかる ケアです

Those are individuals who did not benefit from early treatment,

早期治療の恩恵に あずからなかった人たちです

お話しした通り 自閉症は 学習の道筋から

because now we know that autism creates itself

as individuals diverge in that pathway of learning that I mentioned to you.

逸れていくことで 明白化すると

判明しています

Were we to be able to identify this condition

もし 早い段階で

at an earlier point, and intervene and treat --

症状に気付き 介入して 治療を受けさせるとどうなるか

I can tell you, this has been probably something that has changed my life

ここ10年の 私の人生に

影響を与えた事なのですが

in the past 10 years,

this notion that we can absolutely attenuate this condition.

早期介入によって 我々は障害を―

軽減できるのです

Also, we have a window of opportunity,

チャンスはあります

because the brain is malleable for just so long,

脳が柔軟な時期は 限られていて

and that window of opportunity happens in the first three years of life.

産まれてから３歳までが

その時期です

It's not that that window closes; it doesn't.

その後も改善の可能性は 閉ざされる訳ではありませんが

効果は大幅に減ります

But it diminishes considerably.

And yet, the median age of diagnosis in this country

米国で自閉症と診断される―

平均年齢は5歳です

is still about five years,

and in disadvantaged populations,

田舎に住む人や

人種的マイノリティーは 医療サービスを受けにくく

the populations that don't have access to clinical services,

rural populations, minorities,

診断される年齢は更に上がります

the age of diagnosis is later still,

こんなことを言うとまるで

そういうコミュニティーにおける

which is almost as if I were to tell you

that we are condemning those communities to have individuals with autism

自閉症の人というのは

症状がこれから 悪化しがちだと告げているかのようですが

whose condition is going to be more severe.

So I feel that we have a bioethical imperative.

生命倫理上 責任を感じます

The science is there.

科学の存在は

But no science is of relevance

社会の役に立たなければ意味がない

if it doesn't have an impact on the community.

だから私達は 治療のチャンスを

And we just can't afford that missed opportunity,

逃すわけにはいきません

because children with autism become adults with autism.

自閉症の子供は 自閉症を持った大人になります

この子達や その家族の為 もっと早くに―

And we feel that those things we can do

for these children, for those families, early on,

何かできたなら

will have lifetime consequences --

子どもや家族 地域の

生涯にわたる変化が起こるでしょう

for the child, for the family, and for the community at large.

これが我々の見解です

So this is our view of autism.

自閉症に関連する遺伝子は

There are over a hundred genes that are associated with autism.

現在100程発見されていますが

In fact, we believe there are going to be

遺伝子だけに限らず 遺伝的異常の数は 300～600にもなると

something between 300 and 600 genes associated with autism,

and genetic anomalies, much more than just genes.

信じられています

And we actually have a bit of a question here,

ここで疑問が一つ 出てきます

because if there are so many different causes of autism,

自閉症の原因が そんなに多いなら

how do you go from those liabilities to the actual syndrome?

それらの障害からどのようにして

実際の症候群になるのでしょうか

Because people like myself,

私のような専門家は遊び場に行けば

when we walk into a playroom,

we recognize a child as having autism.

自閉症の子が見分けられます

So how do you go from multiple causes

数ある原因から―

共通点のある症候群が 発生するのはなぜか

to a syndrome that has some homogeneity?

And the answer is what lies in between,

原因と症候群を結ぶ物

which is development.

それは発達です

And in fact, we are very interested in those first two years of life,

障害は必ずしも自閉症へと

発展するわけではないので

because those liabilities don't necessarily convert into autism.

2歳になるまでが重要なのです

Autism creates itself.

自閉症は自己発現します

Were we to be able to intervene during those years of life,

2歳になる前に治療的介入ができれば

we might attenuate for some, and God knows, maybe even prevent for others.

一部の人の症状を緩和したり

未然に防ぐ事さえ可能かもしれません

So how do we do that?

でもどうすればよいのでしょうか

How do we enter that feeling of resonance,

どうすれば 彼らに共感を経験させ

how do we enter another person's being?

他者の存在に気付かせることが できるでしょう

先程の15か月の女の子とふれあった時も

I remember when I interacted with that 15-month-old,

the thing that came to my mind was,

彼女の世界に入るには

"How do you come into her world?

どうすればよいか でした

｢彼女は私や他人の事を 考えるのか？」と

Is she thinking about me? Is she thinking about others?"

Well, it's hard to do that,

だから方法を編み出しました

so we had to create the technologies.

We had to basically step inside a body.

要するに彼女の中に入りこんで

We had to see the world through her eyes.

彼女の目で世界を見る必要があります

そこで 視線を追いかける新技術を

And so in the past many years,

we've been building these new technologies

長い年月をかけて開発しました

that are based on eye tracking.

We can see, moment by moment, what children are engaging with.

子供が何に注目しているのか

刻々と見る事ができます

同僚のウォレンと私は

This is my colleague, Warren Jones,

with whom we've been building these methods, these studies,

開発に12年かけました

for the past 12 years.

And you see there a happy five-month-old,

この生後5か月の赤ん坊は

a five-month little boy who is going to watch things

母親や周りの人々等

that are brought from his world:

彼の世界にあるものを 見ています

his mom, the caregiver,

but also experiences that he would have were he to be in his daycare.

でも彼はそれだけではなく

託児所で経験する事も

目にするのです

What we want is to embrace that world and bring it into our laboratory,

我々はその世界を捉えて

研究室に持っていきたい

but in order for us to do that,

その為には

we had to create these very sophisticated measures,

非常に精緻な技術が必要でした

大人や幼児 新生児達が

measures of how people, how little babies,

how newborns, engage with the world, moment by moment.

世界にどう注目するのか

刻々とらえます

何が重要で 何が重要でないか

What is important and what is not.

Well, we created those measures,

それを示す指標を作りました

and here, what you see is what we call a funnel of attention.

｢注目のじょうご」と呼びます

You're watching a video --

普通に成長している2歳児に

those frames are separated by about a second --

フレームが約1秒区切りの―

through the eyes of 35 typically developing two-year-olds.

ビデオを見せた時の目の動きです

And we freeze one frame,

フレームを

停止すると そういう子達は

and this is what the typical children are doing.

目をこう動かします

In this scan pass, in green here, are two-year-olds with autism.

緑色の部分は 自閉症の子です

So on that frame, the children who are typical are watching this,

つまり 普通の子が

フレームの中に見るのは

the emotion of expression of that little boy

女の子とけんか中の―

as he's fighting a little bit with the little girl.

男の子の感情表現ですが

What are the children with autism doing?

自閉症の子はと言うと

They are focusing on the revolving door,

回転ドアが開閉する様子に

opening and shutting.

見入っています

Well, I can tell you that this divergence that you're seeing here

今 お見せした

違いは

doesn't happen only in our five-minute experiment.

この実験中だけでなく

It happens moment by moment in their real lives,

生活の中で常に発生しています

and their minds are being formed and their brains are being specialized

そして彼らの精神と脳は

普通の子の精神や脳とは

in something other than what is happening with their typical peers.

異なって形成され 特殊化されるのです

Well, we took a construct from our pediatrician friends,

小児科の友人から

｢発育曲線｣の概念を

拝借しました

the concept of growth charts --

you know, when you take a child to the pediatrician,

子供を小児科に連れて行くと

身長・体重を測定します

and you have physical height and weight.

Well, we decided we were going to create growth charts

我々は社会との関わりを

曲線にするのです

of social engagement.

We sought children from the time they're born.

誕生時から観察を始めます

What you see here on the x-axis

横軸は月齢です 2か月、3か月、4か月、5か月、

is two, three, four, five, six months and nine,

6か月、と 大体24か月まで続けます

until about the age of 24 months.

This is the percent of their viewing time

縦軸は子供が人の目を

that they're focusing on people's eyes,

見つめた時間の割合です

and this is their growth chart.

これがその発育曲線

始まりはここ 人の目が好きで

They start over here -- they love people's eyes --

and it remains quite stable.

それはほぼ変わりません

It sort of goes up a little bit in those initial months.

最初の数か月は わずかに上昇するようです

Now, let's see what's happening with babies who became autistic.

自閉症になった

子供達の場合は

It's something very different.

全く違う曲線になります

It starts way up here, but then it's a free fall.

始まりはこんなに高いのですが 急激に下降します

It's very much like they brought into this world the reflex

生まれつきの反射で 人を見ますが

that orients them to people, but it has no traction.

そこには 惹きつけられません

It's almost as if that stimulus -- you --

あなたがいたからといって

you're not exerting influence on what happens

彼らが日常生活を送る中での

as they navigate their daily lives.

出来事には影響しないのです

Now, we thought those data were so powerful, in a way,

こんなにはっきりした データが得られるなら

生後6か月経過するまでに

that we wanted to see what happened in the first six months of life,

何が起きるのか見てみたいと考えました

because if you interact with a two- and a three-month-old,

2～3か月の子は

驚くほど社交的なものですから

you'd be surprised by how social those babies are.

And what we see in the first six months of life

生後6か月未満の子どもでも

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

is that those two groups can be segregated very easily.

And using these kinds of measures and many others,

この種の評価法を使い

我々の科学的手法で実際に 自閉症を

what we found out is that our science could, in fact,

identify this condition early on.

早期に特定できるとわかりました

We didn't have to wait for the behaviors of autism

自閉症の行動が現れる―

to emerge in the second year of life.

1歳以後まで待つ必要もありません

進化によって高度に保持され 発達の面では

If we measured things that are, evolutionarily, highly conserved,

生後数週間という 極めて早い段階から

and developmentally very early-emerging --

things that are online from the first weeks of life --

現れてくる徴候を計測すれば

we could push the detection of autism

自閉症の発見を

all the way to those first months,

生後数か月まで 早める事ができるでしょう

and that's what we are doing now.

今取り組んでいることです

Now, we can create the very best technologies

子供達の自閉症診断の為の

and the very best methods to identify the children,

最も適した技術と方法の 完成です

but this would be for naught if we didn't have an impact

でも 彼らの社会生活に

on what happens in their reality in the community.

変化がなければ無意味になります

Now we want those devices, of course,

勿論 この診断法を

to be deployed by those who are in the trenches --

最前線にいる人々 つまり―

our colleagues, the primary care physicians, who see every child --

あらゆる子供に会う―

かかりつけ医に 実践してほしいと願います

and we need to transform those technologies

この技術を活かし

into something that is going to add value to their practice,

多くの子供に会う彼らの

because they have to see so many children.

診療に寄与しなければなりません

And we want to do that universally so that we don't miss any child.

見逃がしのないよう

広く普及してほしいのです

But this would be immoral

ただし 介入し治療するための―

if we also did not have an infrastructure for intervention, for treatment.

環境が整っていなければ この診断はモラルに反します

We need to be able to work with the families, support the families,

必要なのは 自閉症児の―

家族を助け 最初の数年を乗り切る事

to manage those first years with them.

「誰でも診断を受けられる」 から

We need to be able to really go

from universal screening to universal access to treatment,

｢誰でも治療を受けられる」 まで進めるべきです

because those treatments are going to change

これらの治療は自閉症児だけでなく

these children's and those families' lives.

家族の人生も 変えるのですから

最初の数年にできる治療のことを

Now, when we think about what we [can] do in those first years,

考えてみると

I can tell you, having been in this field for so long,

こう思います

長年この分野で働いて

本当に若返りを感じます

one feels really rejuvenated.

There is a sense that the science that one worked on

取り組んできた科学を基に

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

can actually have an impact on realities,

preventing, in fact, those experiences

自閉症に関わり始めた頃のように

that I really started in my journey in this field.

どうする事もできない状態だなどと

感じることは なくなりました

I thought at the time that this was an intractable condition.

状況は変化し 多くの事が可能になりました

No longer. We can do a great deal of things.

And the idea is not to cure autism.

｢自閉症を治す」という

That's not the idea.

考え方ではありません

What we want is to make sure

ときに見られる 壊滅的な事態が

that those individuals with autism can be free

自閉症の患者に生じることを

from the devastating consequences that come with it at times,

なくすようにしたいのです

the profound intellectual disabilities, the lack of language,

重度の知的障害や 言語障害

the profound, profound isolation.

深刻な孤立などです

We feel that individuals with autism, in fact,

実際 自閉症者は

have a very special perspective on the world,

特別な物の見方を有しているようです

and we need diversity.

多様性は必要ですし ある種の能力においては

And they can work extremely well in some areas of strength:

非常に優秀です

predictable situations, situations that can be defined.

予測可能な状況や 定義可能な状況です

Because after all, they learn about the world

世界に「おいて」 どう機能するかでなく

almost, like, about it,

世界に「ついて」 彼らは学ぶのですから

rather than learning how to function in it.

But this is a strength if you're working, for example, in technology.

これは例えばテクノロジー向きの

能力ですが

And there are those individuals who have incredible artistic abilities.

驚くべき芸術的才能を

持つ人もいます

We want them to be free to do that.

つらい目にあわないだけでなく

次世代の自閉症を持つ人は

We want that the next generations of individuals with autism

will be able not only to express their strengths,

自分の強みを発揮して

but to fulfill their promise.

才能を開花させてほしいと願います

Well, thank you for listening to me.

ご清聴ありがとうございます （拍手）

(Applause)