TED日本語 - アミ・クリン: 自閉症 新たな診断法

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TED日本語 - アミ・クリン: 自閉症 新たな診断法

TED Talks

自閉症 新たな診断法
A new way to diagnose autism
アミ・クリン
Ami Klin

内容

自閉症スペクトラムの早期診断が関係者全員の人生の向上につながることがある。しかし自閉症を引き起こす要因が複雑に連関しているせいで、症状の予期は信じがたいほど難しい。TEDxPeachtreeで、アミ・クリンは、視線を追跡して赤ん坊が持つ社会と関わる能力を測定し、自閉症が深刻化する危険性を確実に認定するという、自閉症を早期発見の為の新たな診断法について語る。(TEDxPeachTreeにて撮影)

Script

I always wanted to become a walking laboratory of social engagement, to resonate other people's feelings, thoughts, intentions, motivations, in the act of being with them. As a scientist, I always wanted to measure that resonance, that sense of the other that happens so quickly, in the blink of an eye. We intuit other people's feelings. We know the meaning of their actions even before they happen. We're always in this stance of being the object of somebody else's subjectivity. We do that all the time. We just can't shake it off. It's so important that the very tools that we use to understand ourselves, to understand the world around them, is shaped by that stance. We are social to the core.

So my journey in autism really started when I lived in a residential unit for adults with autism. Most of those individuals had spent most of their lives in long-stay hospitals. This is a long time ago. And for them, autism was devastating. They had profound intellectual disabilities. They didn't talk. But most of all, they were extraordinarily isolated from the world around them, from their environment and from the people. In fact, at the time, if you walked into a school for individuals with autism, you'd hear a lot of noise, plenty of commotion, actions, people doing things, but they're always doing things by themselves. So they may be looking at a light in the ceiling, or they may be isolated in the corner, or they might be engaged in these repetitive movements, in self-stimulatory movements that led them nowhere. Extremely, extremely isolated.

Well, now we know that autism is this disruption, the disruption of this resonance that I am telling you. These are survival skills. These are survival skills that we inherited over many, many hundreds of thousands of years of evolution.

You see, babies are born in a state of utter fragility. Without the caregiver, they wouldn't survive, so it stands to reason that nature would endow them with these mechanisms of survival. They orient to the caregiver. From the first days and weeks of life, babies prefer to hear human sounds rather than just sounds in the environment. They prefer to look at people rather than at things, and even as they're looking at people, they look at people's eyes, because the eye is the window to the other person's experiences, so much so that they even prefer to look at people who are looking at them rather than people who are looking away. Well, they orient to the caregiver. The caregiver seeks the baby. And it's out of this mutually reinforcing choreography that a lot that is of importance to the emergence of mind, the social mind, the social brain, depends on.

We always think about autism as something that happens later on in life. It doesn't. It begins with the beginning of life. As babies engage with caregivers, they soon realize that, well, there is something in between the ears that is very important -- it's invisible, you can't see -- but is really critical, and that thing is called attention. And they learn soon enough, even before they can utter one word that they can take that attention and move somewhere in order to get things they want. They also learn to follow other people's gaze, because whatever people are looking at is what they are thinking about. And soon enough, they start to learn about the meaning of things, because when somebody is looking at something or somebody is pointing at something, they're not just getting a directional cue, they are getting the other person's meaning of that thing, the attitude, and soon enough they start building this body of meanings, but meanings that were acquired within the realm of social interaction. Those are meanings that are acquired as part of their shared experiences with others.

Well, this is a little 15-month-old little girl, and she has autism. And I am coming so close to her that I am maybe two inches from her face, and she's quite oblivious to me. Imagine if I did that to you, and I came two inches from your face. You'd do probably two things, wouldn't you? You would recoil. You would call the police. (Laughter) You would do something, because it's literally impossible to penetrate somebody's physical space and not get a reaction. We do so, remember, intuitively, effortlessly. This is our body wisdom. It's not something that is mediated by our language. Our body just knows that, and we've known that for a long time.

And this is not something that happens to humans only. It happens to some of our phylatic cousins, because if you're a monkey, and you look at another monkey, and that monkey has a higher hierarchy position than you, and that is considered to be a signal or threat, well, you are not going to be alive for long. So something that in other species are survival mechanisms, without them they wouldn't basically live, we bring into the context of human beings, and this is what we need to simply act, act socially.

Now, she is oblivious to me, and I am so close to her, and you think, maybe she can see you, maybe she can hear you. Well, a few minutes later, she goes to the corner of the room, and she finds a tiny little piece of candy, an M & M. So I could not attract her attention, but something, a thing, did. Now, most of us make a big dichotomy between the world of things and the world of people. Now, for this girl, that division line is not so clear, and the world of people is not attracting her as much as we would like. Now remember that we learn a great deal by sharing experiences. Now, what she is doing right now is that her path of learning is diverging moment by moment as she is isolating herself further and further. So we feel sometimes that the brain is deterministic, the brain determines who we are going to be. But in fact the brain also becomes who we are, and at the same time that her behaviors are taking away from the realm of social interaction, this is what's happening with her mind and this is what's happening with her brain.

Well, autism is the most strongly genetic condition of all developmental disorders, and it's a brain disorder. It's a disorder that begins much prior to the time that the child is born. We now know that there is a very broad spectrum of autism. There are those individuals who are profoundly intellectually disabled, but there are those that are gifted. There are those individuals who don't talk at all. There are those individuals who talk too much. There are those individuals that if you observe them in their school, you see them running the periphery fence of the school all day if you let them, to those individuals who can not stop coming to you and trying to engage you repeatedly, relentlessly, but often in an awkward fashion, without that immediate resonance.

Well, this is much more prevalent than we thought at the time. When I started in this field, we thought that there were four individuals with autism per 10,000, a very rare condition. Well, now we know it's more like one in 100. There are millions of individuals with autism all around us.

The societal cost of this condition is huge. In the U.S. alone, maybe 35 to 80 billion dollars, and you know what? Most of those funds are associated with adolescents and particularly adults who are severely disabled, individuals who need wrap-around services, services that are very, very intensive, and those services can cost in excess of 60 to 80,000 dollars a year. Those are individuals who did not benefit from early treatment, because now we know that autism creates itself as they diverge in that pathway of learning that I mentioned to you. Were we to be able to identify this condition at an earlier point, and intervene and treat, I can tell you, and this has been probably something that has changed my life in the past 10 years, this notion that we can absolutely attenuate this condition. Also, we have a window of opportunity, because the brain is malleable for just so long, and that window of opportunity happens in the first three years of life. It's not that that window closes. It doesn't. But it diminishes considerably. And yet, the median age of diagnosis in this country is still about five years, and in disadvantaged populations, the populations that don't have access to clinical services, rural populations, minorities, the age of diagnosis is later still, which is almost as if I were to tell you that we are condemning those communities to have individuals with autism whose condition is going to be more severe. So I feel that we have a bio-ethical imperative. The science is there, but no science is of relevance if it doesn't have an impact on the community, and we just can't afford that missed opportunity, because children with autism become adults with autism, and we feel that those things that we can do for these children, for those families, early on, will have lifetime consequences, for the child, for the family, and for the community at large. So this is our view of autism.

There are over a hundred genes that are associated with autism. In fact, we believe that there are going to be something between 300 and 600 genes associated with autism, and genetic anomalies, much more than just genes. And we actually have a bit of a question here, because if there are so many different causes of autism, how do you go from those liabilities to the actual syndrome? Because people like myself, when we walk into a playroom, we recognize a child as having autism. So how do you go from multiple causes to a syndrome that has some homogeneity? And the answer is, what lies in between, which is development. And in fact, we are very interested in those first two years of life, because those liabilities don't necessarily convert into autism. Autism creates itself. Were we to be able to intervene during those years of life, we might attenuate for some, and God knows, maybe even prevent for others.

So how do we do that? How do we enter that feeling of resonance, how do we enter another person's being? I remember when I interacted with that 15-month-older, that the thing that came to mind was, "How do you come into her world? Is she thinking about me? Is she thinking about others?" Well, it's hard to do that, so we had to create the technologies. We had to basically step inside a body. We had to see the world through her eyes.

And so in the past many years we've been building these new technologies that are based on eye tracking. We can see moment by moment what children are engaging with. Well, this is my colleague Warren Jones, with whom we've been building these methods, these studies, for the past 12 years, and you see there a happy five-month-older, it's a five-month little boy who is going to watch things that are brought from his world, his mom, the caregiver, but also experiences that he would have were he to be in his daycare. What we want is to embrace that world and bring it into our laboratory, but in order for us to do that, we had to create these very sophisticated measures, measures of how people, how little babies, how newborns, engage with the world, moment by moment, what is important, and what is not.

Well, we created those measures, and here, what you see is what we call a funnel of attention. You're watching a video. Those frames are separated by about a second through the eyes of 35 typically developing two-year-olds, and we freeze one frame, and this is what the typical children are doing. In this scan pass, in green here, are two-year-olds with autism. So on that frame, the children who are typical are watching this, the emotion of expression of that little boy as he's fighting a little bit with the little girl. What are the children with autism doing? They are focusing on the revolving door, opening and shutting. Well, I can tell you that this divergence that you're seeing here doesn't happen only in our five-minute experiment. It happens moment by moment in their real lives, and their minds are being formed, and their brains are being specialized in something other than what is happening with their typical peers.

Well, we took a construct from our pediatrician friends, the concept of growth charts. You know, when you take a child to the pediatrician, and so you have physical height, and weight. Well we decided that we're going to create growth charts of social engagement, and we sought children from the time that they are born, and what you see here on the x-axis is two,three,four,five,six months and nine, until about the age of 24 months, and this is the percent of their viewing time that they are focusing on people's eyes, and this is their growth chart. They start over here, they love people's eyes, and it remains quite stable. It sort of goes up a little bit in those initial months. Now, let's see what's happening with babies who became autistic. It's something very different. It starts way up here, but then it's a free fall. It's very much like they brought into this world the reflex that orients them to people, but it has no traction. It's almost as if that stimulus, you, you're not exerting influence on what happens as they navigate their daily lives.

Now, we thought that those data were so powerful in a way, that we wanted to see what happened in the first six months of life, because if you interact with a two- and a three-month-older, you'd be surprised by how social those babies are. And what we see in the first six months of life is that those two groups can be segregated very easily. And using these kinds of measures, and many others, what we found out is that our science could, in fact, identify this condition early on. We didn't have to wait for the behaviors of autism to emerge in the second year of life. If we measured things that are, evolutionarily, highly conserved, and developmentally very early emerging, things that are online from the first weeks of life, we could push the detection of autism all the way to those first months, and that's what we are doing now.

Now, we can create the very best technologies and the very best methods to identify the children, but this would be for naught if we didn't have an impact on what happens in their reality in the community. Now we want those devices, of course, to be deployed by those who are in the trenches, our colleagues, the primary care physicians, who see every child, and we need to transform those technologies into something that is going to add value to their practice, because they have to see so many children. And we want to do that universally so that we don't miss any child, but this would be immoral if we also did not have an infrastructure for intervention, for treatment. We need to be able to work with the families, to support the families, to manage those first years with them. We need to be able to really go from universal screening to universal access to treatment, because those treatments are going to change these children's and those families' lives.

Now, when we think about what we [ can ] do in those first years, I can tell you, having been in this field for so long,one feels really rejuvenated. There is a sense that the science that one worked on can actually have an impact on realities, preventing, in fact, those experiences that I really started in my journey in this field. I thought at the time that this was an intractable condition. No longer. We can do a great deal of things.

And the idea is not to cure autism. That's not the idea. What we want is to make sure that those individuals with autism can be free from the devastating consequences that come with it at times, the profound intellectual disabilities, the lack of language, the profound, profound isolation. We feel that individuals with autism, in fact, have a very special perspective on the world, and we need diversity, and they can work extremely well in some areas of strength: predictable situations, situations that can be defined. Because after all, they learn about the world almost like about it, rather than learning how to function in it. But this is a strength, if you're working, for example, in technology. And there are those individuals who have incredible artistic abilities. We want them to be free of that. We want that the next generations of individuals with autism will be able not only to express their strengths but to fulfill their promise.

Well thank you for listening to me. (Applause)

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- 意思 欲求に共感したいと 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 「他者と共にいる」という- 瞬時に生まれる感覚 人の気持ちは直感でわかります 人の行為の意味は あらかじめ わかってしまいます 我々は常に 他者の主観の対象という立場に置かれています 途切れることなく避けることもできません 大変重要なことで 自分や周りの世界を- 理解する手段はまさにその立場から形づくられます 人は 骨の髄まで社会的です

自閉症の探求の出発点は 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 人生の大半を病院で過ごしてきた人ばかり 彼らにとって 自閉症は災いでした 深刻な知的障害を持ち 口も利けないでも最悪なのは- 極めて孤立していたこと 自分たちを取り巻く世界や環境や 人から孤立しているのです 当時の自閉症者の学校は 騒がしく 落ち着きがなくて 何かしている人がいてもその人達は決まって 独りぼっちでした 天井の照明を見つめたり 部屋の隅に引きこもったり 何の意味もない自己刺激運動を 延々と繰り返すのに夢中だったり 非常に根の深い孤立です

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 今は分かっています 共感は 数十万年の 進化の歴史の中で 人類が受け継いできた 生存の為の知恵です

赤ん坊は無力なので生き延びるには 誰かに- 世話をしてもらいます 彼らに共感能力が あ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 産まれた日や最初の数週間から ただの物音より人の立てる音を 好むのです 彼らは物よりも 人を見るのを好み 特に人の目を見つめます 目は 他人の経験に通じる窓だからです だから 彼らは 自分を見ている人の事を見るのです 世話をする人を その逆も言えます 互いに与えあうこのダンスこそ 社会的な精神 頭脳が 誕生するのに極めて重要な事なのです

自閉症は 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 それは間違いです生まれつきのものなのです 世話をする人と交流し赤ん坊は気付く 「両耳の間には何かがあるな」 重要なもの 目には見えないがとても大事なもの 「注目」です 赤ん坊はたちどころに学びます 言葉を話す前から 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 人の視線を追う事も学ぶ 人が見る物 それは 頭に思い浮かべている物ですから そしてすぐ 物の意味を 学び始めます何故なら 人は- 何かを見たり指差す時 ただ方向を示すだけでなく その物が持つ意味を 他人に対して示しているからです 赤ん坊はすぐこの意味のシステムを築き始めます でも 交流なしには 「意味」を学ぶことはできません 体験を共有して 初めて 物の「意味」を学ぶ事ができるのです

この小さな女の子は1歳3カ月で 自閉症です 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 もし5センチまで 顔を近づけられたらどうします? たぶん 二つに一つ 後ずさりするか警察を呼ぶか (笑) 何かはするでしょう 領域を侵されると人は 必ず反応するのです 本能的に 自然に そうするのです これは体の働き 言葉に関係なく体はそう動くものです ずっと昔からそうなのです

人間だけではありません 人間に近い動物たちもです あなたが猿で 他の猿を見ていて その猿があなたより地位が高ければ 合図 または威嚇とみなされ あなたの命はそこまでです 他の動物にとっては不可欠の- 生き残る為の知恵ですが 人間にとっては単に 社会的活動に必要な事というだけです

こんな近くにいれば 私が見えたり 声が聞こえたりすると思います 数分後 この子は 部屋の隅に行きちっちゃなキャンディを見つけます 彼女の「注意」は私には向かなくても 何か物には向くのです ほとんどの人にとって 「物の世界」と「人の世界」があります この子にとって その境界は定かでなく 人の世界に対する興味は期待されるほど 強くありません 「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 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 学びの道からどんどん外れていくのです 脳の将来の姿は決まっていて その脳がどんな人になるか決めると思いがちです 実は脳も私達自身になる この子の行動が社会的交流から 切り離される時精神や脳にも そういう事が起こっているのです

自閉症はあらゆる発達障害の中で 一番強く 遺伝的条件に支配されるものであり 脳の障害なのです 子供が生まれるより ずっと前から始まっています 自閉症スペクトラムは幅広く 重い知的障害の人も 才能のある人もいます 全く口を利かない人 しゃべりすぎる人も 止められなければ 学校のフェンス沿いに一日中 走っている人もいます 人のところに来て 繰り返し 執拗に 気を惹こうとするけれど 他人の心をはかり知ることができない人もいます

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 この分野で働き始めたとき自閉症は稀で- 1万人中4人程度だと 考えられていました 現在の研究では割合は100人中1人 数百万の自閉症者がいる計算になります

関連する社会保障費は莫大で 米国だけで350~800億ドル この費用の大半は 深刻な障害を持ち 総合的で徹底的な ケアを必要とする 若者や大人のための 一年で6~8万ドルかかるケアです 早期療育の恩恵にあずからなかった人たちです お話した通り 自閉症は学習の道筋から 逸れていくことで重症化すると 判明しています もし 早い段階で 症状に気付き療育を受けさせるとどうなるか ここ10年の 私の人生に 影響を与えた事なのですが 早期療育によって我々は症状を- 軽減できるのです チャンスはあります 脳が柔軟な時期は充分長い 産まれてから3歳までが その時期です その後も改善の可能性は閉ざされません ただ効果は大幅に減るのです 米国で自閉症と診断される- 平均年齢は5歳 田舎に住む人や マイノリティーは医療サービスを受けにくく 診断される年齢は更に上がります こんなことを言うとまるで そういうコミュニティーに対して 自閉症の人がいて 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 生命倫理上 責任を感じます 科学の存在は 社会の役に立たなければ意味がない だから私達は療育のチャンスを 逃してはならない 成長しても彼らは自閉症です この子達や その家族の為もっと早くに- 何かできたなら 子どもや家族や地域には 決定的な変化が起こるでしょう これが我々の見解です

自閉症に関連する遺伝子は 現在100を超え やがてその数は300~600になると 信じられています ここで疑問が一つ出てきます 自閉症の原因因子が数多いなら 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 専門家は遊び場に行けば 自閉症の子が見分けられます 数ある原因因子から- 共通点のある症候群が発生するのはなぜか 因子と症候群を結ぶ物 それは発達です 因子は必ずしも自閉症へと 発展するわけではないので 2歳になるまでが重要なのです 自閉症は自己強化します 2歳になる前に診断・療育等医療が介入できれば 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

でもどうすればよいのでしょうか どうすれば 彼らの感情を呼び覚まし 他者に共感させることができるでしょうか 先程の15か月の女の子とふれあった時も 彼女の身になって 考えるのは難しいことでした 「彼女は私や他人の事を考えるのか?」と だから方法を編み出しました 要するに彼女の中に入りこんで 彼女の目で世界を見られれば良いのです

視線を追いかける新技術を 長い年月をかけて開発しました 子供が何に注目しているのか 秒単位で見る事ができます 同僚のウォレンと私は 開発に12年かけました この生後5か月の赤ん坊は 母親や周りの人々等 彼の世界にあるものを見ています 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 我々はその世界を捉えて研究室に 持っていきたい その為には 非常に精緻な技術が必要でした 大人や幼児 新生児達が 世界にどう注目するのか 刻々ととらえます 何が重要で 何が重要でないか

それを示す指標を作りました 「注目のじょうご」と呼びます 自閉症でない2歳児に フレームが約1秒区切りの- ビデオを見せた時の目の動きです フレームを 停止すると そういう子達は 目をこう動かします 緑色の部分は自閉症の子です つまり 自閉症でない子が フレームの中に見るのは 女の子とけんか中の- 男の子の感情表現ですが 自閉症の子はと言うと 回転ドアが開閉する様子に 注目しています 今 お見せした 違いは この実験中だけでなく 生活の中で常に発生しています そして彼らの精神と脳は 自閉症でない人の精神や脳とは 異なるものになるのです

小児科の友人から 「発育曲線」の概念を 拝借しました 小児科では 子供の 身長・体重を曲線に表す事ができます 我々は社会との関わりを 曲線にするのです 誕生時から観察を始めます 横軸は月齢です2か月、3か月、4か月、5か月、 6か月、と大体24か月まで続けます 縦軸は子供が人の目を 見つめた時間の割合です これがその発育曲線 始まりはここ人の目が好きで それはほぼ変わりません 最初の数か月はわずかに上昇するようです 自閉症の症状がある 子供達の場合は 全く違う曲線になる 始まりはここですが急激に下降する 生まれつきの反射で人を見ますが そこには惹きつけられません あなたがいたからといって 彼らが日常生活を送る中での 出来事には影響しないのです

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 何が起きるのか見てみたいと考えました 2~3か月の子は 驚くほど社交的なものですから 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 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の症状を 早期に特定できるとわかりました 自閉症特有の行動が現れる- 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 生後数週間という極めて早い段階から 現れてくる徴候を計測すれば 自閉症の発見を 生後数か月まで早める事ができるでしょう 今取り組んでいることです

子供達の自閉症診断の為の 最も適した技術と方法の完成です でも 彼らの社会生活に 変化がなければ無駄になります 勿論 この診断法を 最前線にいる人々つまり- 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 この技術を活かし 多くの子供に会う彼らの 診断の価値を高めなければなりません 見逃がしのないよう 徹底してほしいのです ただ 介入し治療するための- 環境が整っていなければこの診断はモラルに 反します 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 「誰でも診断を受けられる」から 「誰でも治療を受けられる」まで進めるべきです 療育は自閉症児だけでなく 家族の人生も変えるのですから

研究の初期にできなかったいろいろなことを 振り返ってみると こう思います 長年続けてきたことで この分野は盛んになってきたと感じます 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 自閉症に関わり始めた頃のように どうする事もできない状態だなどと 感じることははなくなりました 状況は変化し多くの事が可能になりました

「自閉症を治す」という 考え方ではありません ときに見られる壊滅的な事態が 自閉症の患者に生じるのを 確実に避けられるようにしたいのです 重度の知的障害や言語の欠如 深刻な孤立などです 実際 自閉症者は 特別な物の見方を有しているようです 多様性は必要ですしある種の能力においては 非常に優秀です 予測可能な状況や定義可能な状況です 世界に「おいて」どう機能するかでなく 世界に「ついて」彼らは学ぶのですから これは例えばテクノロジー向きの 能力ですが 驚くべき芸術的才能を 持つ人もいます つらい目にあわないだけでなく 次世代の自閉症者は 強みを発揮して 才能を開花させてほしいと願います

ご清聴ありがとうございます(拍手)

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