0:11

Just after Christmas last year, 132 kids in California got the measles by either visiting Disneyland or being exposed to someone who'd been there. The virus then hopped the Canadian border, infecting more than 100 children in Quebec. One of the tragic things about this outbreak is that measles, which can be fatal to a child with a weakened immune system, is one of the most easily preventable diseases in the world. An effective vaccine against it has been available for more than half a century, but many of the kids involved in the Disneyland outbreak had not been vaccinated because their parents were afraid of something allegedly even worse: autism.

0:59

But wait -- wasn't the paper that sparked the controversy about autism and vaccines debunked, retracted, and branded a deliberate fraud by the British Medical Journal? Don't most science-savvy people know that the theory that vaccines cause autism is B.S.? I think most of you do, but millions of parents worldwide continue to fear that vaccines put their kids at risk for autism.

1:27

Why? Here's why. This is a graph of autism prevalence estimates rising over time. For most of the 20th century, autism was considered an incredibly rare condition. The few psychologists and pediatricians who'd even heard of it figured they would get through their entire careers without seeing a single case. For decades, the prevalence estimates remained stable at just three or four children in 10,000. But then, in the 1990s, the numbers started to skyrocket. Fundraising organizations like Autism Speaks routinely refer to autism as an epidemic, as if you could catch it from another kid at Disneyland.

2:12

So what's going on? If it isn't vaccines, what is it? If you ask the folks down at the Centers for Disease Control in Atlanta what's going on, they tend to rely on phrases like "broadened diagnostic criteria" and "better case finding" to explain these rising numbers. But that kind of language doesn't do much to allay the fears of a young mother who is searching her two-year-old's face for eye contact. If the diagnostic criteria had to be broadened, why were they so narrow in the first place? Why were cases of autism so hard to find before the 1990s?

2:52

Five years ago, I decided to try to uncover the answers to these questions. I learned that what happened has less to do with the slow and cautious progress of science than it does with the seductive power of storytelling. For most of the 20th century, clinicians told one story about what autism is and how it was discovered, but that story turned out to be wrong, and the consequences of it are having a devastating impact on global public health. There was a second, more accurate story of autism which had been lost and forgotten in obscure corners of the clinical literature. This second story tells us everything about how we got here and where we need to go next.

3:40

The first story starts with a child psychiatrist at Johns Hopkins Hospital named Leo Kanner. In 1943, Kanner published a paper describing 11 young patients who seemed to inhabit private worlds, ignoring the people around them, even their own parents. They could amuse themselves for hours by flapping their hands in front of their faces, but they were panicked by little things like their favorite toy being moved from its usual place without their knowledge. Based on the patients who were brought to his clinic, Kanner speculated that autism is very rare. By the 1950s, as the world's leading authority on the subject, he declared that he had seen less than 150 true cases of his syndrome while fielding referrals from as far away as South Africa. That's actually not surprising, because Kanner's criteria for diagnosing autism were incredibly selective. For example, he discouraged giving the diagnosis to children who had seizures but now we know that epilepsy is very common in autism. He once bragged that he had turned nine out of 10 kids referred to his office as autistic by other clinicians without giving them an autism diagnosis.

4:59

Kanner was a smart guy, but a number of his theories didn't pan out. He classified autism as a form of infantile psychosis caused by cold and unaffectionate parents. These children, he said, had been kept neatly in a refrigerator that didn't defrost. At the same time, however, Kanner noticed that some of his young patients had special abilities that clustered in certain areas like music, math and memory. One boy in his clinic could distinguish between 18 symphonies before he turned two. When his mother put on one of his favorite records, he would correctly declare, "Beethoven!" But Kanner took a dim view of these abilities, claiming that the kids were just regurgitating things they'd heard their pompous parents say, desperate to earn their approval. As a result, autism became a source of shame and stigma for families, and two generations of autistic children were shipped off to institutions for their own good, becoming invisible to the world at large.

6:09

Amazingly, it wasn't until the 1970s that researchers began to test Kanner's theory that autism was rare. Lorna Wing was a cognitive psychologist in London who thought that Kanner's theory of refrigerator parenting were "bloody stupid," as she told me. She and her husband John were warm and affectionate people, and they had a profoundly autistic daughter named Susie. Lorna and John knew how hard it was to raise a child like Susie without support services, special education, and the other resources that are out of reach without a diagnosis. To make the case to the National Health Service that more resources were needed for autistic children and their families,

6:56

Lorna and her colleague Judith Gould decided to do something that should have been done 30 years earlier. They undertook a study of autism prevalence in the general population. They pounded the pavement in a London suburb called Camberwell to try to find autistic children in the community. What they saw made clear that Kanner's model was way too narrow, while the reality of autism was much more colorful and diverse. Some kids couldn't talk at all, while others waxed on at length about their fascination with astrophysics, dinosaurs or the genealogy of royalty. In other words, these children didn't fit into nice, neat boxes, as Judith put it, and they saw lots of them, way more than Kanner's monolithic model would have predicted.

7:48

At first, they were at a loss to make sense of their data. How had no one noticed these children before? But then Lorna came upon a reference to a paper that had been published in German in 1944, the year after Kanner's paper, and then forgotten, buried with the ashes of a terrible time that no one wanted to remember or think about. Kanner knew about this competing paper, but scrupulously avoided mentioning it in his own work. It had never even been translated into English, but luckily, Lorna's husband spoke German, and he translated it for her.

8:26

The paper offered an alternate story of autism. Its author was a man named Hans Asperger, who ran a combination clinic and residential school in Vienna in the 1930s. Asperger's ideas about teaching children with learning differences were progressive even by contemporary standards. Mornings at his clinic began with exercise classes set to music, and the children put on plays on Sunday afternoons. Instead of blaming parents for causing autism, Asperger framed it as a lifelong, polygenetic disability that requires compassionate forms of support and accommodations over the course of one's whole life. Rather than treating the kids in his clinic like patients, Asperger called them his little professors, and enlisted their help in developing methods of education that were particularly suited to them. Crucially, Asperger viewed autism as a diverse continuum that spans an astonishing range of giftedness and disability. He believed that autism and autistic traits are common and always have been, seeing aspects of this continuum in familiar archetypes from pop culture like the socially awkward scientist and the absent-minded professor. He went so far as to say, it seems that for success in science and art, a dash of autism is essential.

9:57

Lorna and Judith realized that Kanner had been as wrong about autism being rare as he had been about parents causing it. Over the next several years, they quietly worked with the American Psychiatric Association to broaden the criteria for diagnosis to reflect the diversity of what they called "the autism spectrum." In the late '80s and early 1990s, their changes went into effect, swapping out Kanner's narrow model for Asperger's broad and inclusive one.

10:27

These changes weren't happening in a vacuum. By coincidence, as Lorna and Judith worked behind the scenes to reform the criteria, people all over the world were seeing an autistic adult for the first time. Before "Rain Man" came out in 1988, only a tiny, ingrown circle of experts knew what autism looked like, but after Dustin Hoffman's unforgettable performance as Raymond Babbitt earned "Rain Man" four Academy Awards, pediatricians, psychologists, teachers and parents all over the world knew what autism looked like.

11:04

Coincidentally, at the same time, the first easy-to-use clinical tests for diagnosing autism were introduced. You no longer had to have a connection to that tiny circle of experts to get your child evaluated.

11:20

The combination of "Rain Man," the changes to the criteria, and the introduction of these tests created a network effect, a perfect storm of autism awareness. The number of diagnoses started to soar, just as Lorna and Judith predicted, indeed hoped, that it would, enabling autistic people and their families to finally get the support and services they deserved.

11:46

Then Andrew Wakefield came along to blame the spike in diagnoses on vaccines, a simple, powerful, and seductively believable story that was as wrong as Kanner's theory that autism was rare.

12:02

If the CDC's current estimate, that one in 68 kids in America are on the spectrum, is correct, autistics are one of the largest minority groups in the world. In recent years, autistic people have come together on the Internet to reject the notion that they are puzzles to be solved by the next medical breakthrough, coining the term "neurodiversity" to celebrate the varieties of human cognition.

12:30

One way to understand neurodiversity is to think in terms of human operating systems. Just because a P.C. is not running Windows doesn't mean that it's broken. By autistic standards, the normal human brain is easily distractable, obsessively social, and suffers from a deficit of attention to detail. To be sure, autistic people have a hard time living in a world not built for them. [Seventy] years later, we're still catching up to Asperger, who believed that the "cure" for the most disabling aspects of autism is to be found in understanding teachers, accommodating employers, supportive communities, and parents who have faith in their children's potential.

13:15

An autistic [man] named Zosia Zaks once said, "We need all hands on deck to right the ship of humanity." As we sail into an uncertain future, we need every form of human intelligence on the planet working together to tackle the challenges that we face as a society. We can't afford to waste a brain.

13:38

Thank you.

13:41

(Applause)

0:11

就在去年圣诞节过后， 加州有132个孩子感染了麻疹, 原因是他们去过了迪斯尼乐园， 或是接触了某些去过迪斯尼的孩子。 之后病毒还窜到了美加边境， 感染了在魁北克的100多个孩子。 这次的麻疹爆发中让人非常痛心的是， 尽管麻疹对于抵抗力低的 孩子可能致命， 它同时也是世界上 最容易预防的疾病之一。 能够有效预防麻疹的疫苗 早在半个多世纪前就已经面世， 但在这次的迪斯尼麻疹大爆发中， 很多被感染的孩子都未接种过疫苗， 因为他们的家长担心 接种疫苗可能会导致一个 更“严重”的问题： 自闭症。 但是—— 回想一下，那篇 引发此争议的报道 不是早已经被英国医学周刊 揭发、撤回，并且被证实是 刻意的欺诈造谣吗？ 难道略懂些科学的人们 不知道所谓“疫苗引发自闭症”的 理论是胡说八道吗？ 我相信大多数人是知道的。 但是世界上还是有很多家长 仍然担心注射疫苗会带来 患上自闭症的风险。 为什么会这样？ 我来告诉你为什么。 这是显示自闭症患者数量 普遍性上升的一个统计图表。 在几乎整个20世纪， 自闭症都被认为是一种 极其罕见的疾病。 少数几个听说过它的 心理学家和儿科医生， 觉得可能在他们的整个职业生涯中 也不会遇到一个这样的病例。 几十年间， 自闭症患者的统计数量都维持稳定， 在1万个孩子中大概有3到4例。 但是到了90年代， 数字开始飞速上升。 像Autism Speaks这样的募款机构 常常将自闭症描述为一种流行病， 就好像你去趟迪斯尼乐园 就能被传染一样。

2:12

那么到底发生了什么呢？ 如果不是疫苗的问题， 那原因究竟何在？ 如果你去问亚特兰大疾控中心的人， 这究竟是怎么回事， 他们的解释多半是“评估标准变松了”， 或是“找到病例的能力变强了”， 所以统计数量上升了。 但是这些话

2:33

并不能减轻年轻母亲们的恐惧，

2:36

尤其是当她发现自己两岁的 孩子目光游移不定时。 如果诊断标准需要放宽， 为什么标准在一开始如此严苛？ 为什么自闭症的病例 在1990年代之前如此难找？ 五年前，我决定试着 找出这些问题的答案。 我的发现是， 这个数量的上升并非是由于 科学进展的缓慢和谨慎，

3:04

更多的是因为故事叙述在诱导大众。 在整个20世纪， 医学界都用一个故事来解释 什么是自闭症以及它的发现过程。 但是那个故事后来被证明是错的， 而这个故事所造成的后果 正对全球公共健康带来灾难性的影响。 然后又有了第二个关于自闭症的故事， 其准确性更高，但却鲜为人知， 仅在临床研究文献中偶尔提及。 第二个故事叙述了我们是 如何走到了今天这个地步， 以及我们之后应该做些什么。 第一个故事开始于约翰霍普金斯医院， 一位叫做 Leopard Kanner的儿童精神病医生。 在1943年，Kanner发表了一篇论文， 描述了11个活在他们自己世界的孩子， 他们忽略身边的所有人， 甚至他们的父母。 他们可以自娱自乐长达几个小时， 仅仅只是自己拍手， 但他们很容易被小事惊扰， 比如他们最喜欢的玩具 没有被放到通常的位置。 基于他所接触的这些病患的情况， Kanner推测自闭症非常罕见。 到50年代，他作为世界上 研究自闭症的权威， 宣称自己只接触了不到 150个“真正病例”， 而慕名而来的诸多患者中 甚至有人来自南非。 这其实也不奇怪。 因为Kanner诊断自闭症的标准 非常苛刻。 比如他不主张对将患有癫痫的 孩子诊断为自闭症， 但现在我们知道癫痫在自闭症中很常见。 他曾经吹嘘说其他医生介绍来的 疑似自闭症的患者中，十个有九个 都不应该被诊断为自闭症。 Kanner是个很聪明的医生， 但他的许多理论都经不起推敲。 他将自闭症归类于一种儿童精神错乱， 是由于缺少来自父母的关爱。 他说，这些孩子 就像被放到了一个无法解冻的冰箱里。 然而同时， Kanner也注意到他的一些幼年患者 在某些领域有着特殊的天赋， 比如音乐，数学和记忆力方面。 他的诊所中的一个男孩 在两岁前就可以辨别18首交响乐。 当他的母亲播放他最喜欢的曲子， 他会正确地说出 “贝多芬！” 但是Kanner对这些能力并不感冒， 声称孩子们只是在重复 他们爱慕虚荣的父母所说的话， 急切地想要赢得父母的赞许。 因此，自闭症患儿成了家庭的耻辱， 整整两代自闭症儿童

6:02

都被送到了精神病院接受治疗， 对整个世界而言， 他们几乎是不存在的。 直到上世纪70年代， 研究人员才开始质疑Kanner 所谓“自闭症罕见”的理论。 Lorna Wing是伦敦一位认知心理学家， 她认为Kanner的“冰箱养育”的理论 “极其愚蠢”， 她这么对我说。 她和她的丈夫John是温暖热情的人， 而他们有一个极度自闭的女儿Susie。 Lorna和John知道 养育Susie这样的孩子困难重重， 他们无法获得支持性服务， 也不能让她接受特殊教育， 因为没有自闭症的诊断书， 很多资源都无法获取。 为了向国家医疗保健系统证明， 自闭症儿童和他们的家庭 需要更多的资源， Lorna和她的同事Judith Gould 决定去做一些三十年前 就应该被完成的事情， 他们在普通人群中进行了 自闭症普及性的研究， 他们在伦敦Camberwell郊区四处奔走， 去寻找社区中的自闭症儿童。 他们的发现证实了 Kanner的理论模式过于狭隘， 而自闭症的现实情况却 十分丰富和多元化。 有些孩子完全不能说话， 而有些孩子却能对天文物理学， 恐龙或者皇室族谱 这些他们感兴趣的事情侃侃而谈。 也就是说，这些孩子并非 一个模子里刻出来的， Judith这样形容道， 他们看到了很多自闭症儿童， 远远超出了Kanner单一的 理论模型所能涵盖的范围。 一开始，他们对自己的数据感到茫然。 之前怎么会没人注意到这些孩子呢？ 但是Loran提到了在1944年发表的 一篇德语论文， 就在Kanner论文发表的一年后， 而这篇文章却被人遗忘， 被一段可怕时光的余烬埋葬， 没人愿意记得或者想起这段时光。 Kanner知道这篇观点不同的文章， 但是在他自己的文章中完全没有提及。 这篇德语论文甚至没有被译成英文， 但幸运的是，Lorna的丈夫懂德语， 他为Lorna翻译了这篇文章。

8:26

这篇论文讲述了有关 自闭症的另一个故事。 故事的作者叫做Hans Asperger， 他在1930年代在Vienna地区 开了一家综合诊所 和一所寄宿学校。 Asperger对于不同孩子 采取不同教学方法的理念 即便在现代也非常先进。

8:46

在他的诊所，孩子们早上练习音乐， 星期天下午会进行表演。 Asperger没有责备父母导致了自闭症， 而是将自闭症描述为一种 多诱因的终身缺陷。 这种缺陷一生都需要人们 同情的支持和理解。 在Asperger的诊所里， 他没有把孩子当做病人， 而是把他们叫做小教授们， 并且在教育方法的建立上 寻求他们的帮助， 而这也正是他们所需要的。 重要的是，Asperger认为 自闭症是一种多元的疾病， 包括了无数的不同缺陷和天赋。 他相信自闭症和 自闭症的特征都很常见， 自始至终都如此，

9:37

可以在身边熟悉的原型中 找到这种共性，

9:43

比如有社交障碍的科学家 和心不在焉的教授。 他得出的结论是， 要在科学或者艺术方面获得成功， 一定程度的自闭是至关重要的。 Lorna和Judith意识到Kanner在 “自闭症是罕见的”和“父母导致了自闭症” 这两点上同样都是错误的。 之后的若干年里， 他们低调地和美国精神病学会合作， 拓宽了诊断自闭症的标准， 来反映他们所说的 “自闭症谱图”的多样性。 在80年代晚期和90年代初期， 他们提出的改变有了成效， 换掉了Kanner狭隘的模型， 取而代之的是Asperger广泛 又更全面的模型。 这些改变并不是凭空出现的。 巧合的是，当Lorna和Judith 私下努力进行 评估标准的改革时， 全世界的人们第一次见到了一位 患有自闭症的成年人。 在1988年“雨人”（电影）出现之前， 只有一小部分内部专家了解 自闭症的症状。 但在Dustin Hoffman扮演了 Raymond Babbitt之后， 这场令人难忘的表演给 “雨人”赢得了四项奥斯卡大奖， 全世界的儿科医生，心理学家， 老师们和家长们都知道了 自闭症的症状。 巧合的是，与此同时， 第一个简便的诊断自闭症的 临床测试出现了。 你不再需要认识那一小部分专家 来给自己的孩子进行诊断。 “雨人”， 评估标准的变化， 以及这些测试的组合， 产生了一种网络效应， 一场对自闭症认知的完美风暴。 自闭症患者的确诊数目开始激增， 就像Lorna和Judith预测 而且希望的那样， 自闭症患者和他们的家庭 最终会得到他们应得的支持和服务。

11:46

之后Andrew Wakefield出现了， 将自闭症归咎于疫苗接种， 这是一个简单，有力， 又容易令人信服故事， 这故事和Kanner的 自闭症很罕见的理论一样错误。

12:02

如果疾控中心目前的 “美国每68个孩子中就有一个 患有自闭症”的估计是正确的， 自闭症患者就是世界上 最大的少数群体之一。 在最近几年里， 自闭症患者在网上聚集起来， 来反驳他们是“下一代医学进展 才能解决的谜题”的说法，

12:23

他们创造了一个词，“神经多样性”， 来赞美人类认知的多元化。

12:30

一种理解“神经多样性”的方法 是从人类的（大脑）操作系统来思考。 一个电脑不运行Windows系统 并不表示它坏了。 从自闭的标准来说， 正常的人类大脑 很容易分心，

12:46

喜欢社交， 而且对细节不太关注。 诚然，自闭症患者痛苦地生活在 一个不是为他们创造的世界里。 （七十）年以后， 我们还在努力追随Asperger的先进想法， 他认为对于自闭症最糟糕的 那些方面的“治疗方法” 是让患者有体贴的老师， 有包容心的上司， 支持他们的社会， 以及相信他们孩子潜力的父母。 一个患有自闭症的男性 Zosia Zaks曾经说过，

13:18

“我们需要双手扶着甲板 来扶正人性的船舶。” 当我们走向未知的未来时， 我们需要地球上 每个拥有智慧的人类， 团结起来，一起努力 解决遇到的问题。 每个人的智慧都举足轻重。

13:38

谢谢。

13:41

（掌声）