如何为“星星的孩子”打开一扇未来之门 "

自闭症儿童有一个充满诗意的名字叫做“星星的孩子”，然而他们的现实状况却并不浪漫，甚至十分残酷。至今为止，自闭症无因可查，也无药可解，它对人类造成了谜一样的困扰。如何才能更好地理解和研究自闭症？如何才能更好地帮助自闭症儿童及家庭？本文作者以自己的亲身经历为蓝本，为我们打开了正确认识自闭症的一扇窗，也为我们走进这个谜一样的世界指明了方向。

The road to understanding autism is unfinished, zigzagging and punctuated by speed bumps, the first of which is the question that transformed my life as a dad in 2008: “What is autism, anyway?” My son was three years old when he was diagnosed, but autism resists definition, vigorously. Despite the prevalence1) of phrases like “autism epidemic” and suggested “cures”, autism is not a disease (an illness caused by a known biological agent), but a syndrome—a cluster of symptoms, or the disorder associated with them. These symptoms cover a lot of tangled ground: impaired communicative and social skills; scrambled sensory processing; delayed childhood development; poor motor functions; an aversion2) to eye contact; tendencies towards repetitive behaviours, spinning and rocking motions.

认识自闭症的道路依旧漫长，曲曲折折，并因障碍而中断。第一个障碍是一个问题，在2008年改变了我身为父亲的生活：“到底什么是自闭症？”我儿子三岁时被确诊，但自闭症很难定义。尽管“流行性自闭症”这类说法盛行，还有人提出各种“治疗良方”，但自闭症并不是一种疾病(疾病是由生物媒介所引起)，而是一种综合征，即一系列的症状，或是与这些症状相关的紊乱。这些症状包含的范围很广，却没有规律：沟通与社交技能受损、感觉处理紊乱、儿童发育滞后、运动机能匮乏、厌恶眼神交流、倾向于重复动作，如旋转与摆动。

Autism’s symptoms vary widely from person to person, and change over time. There’s an evergreen3) adage4): “If you’ve met one person with autism, you’ve met one person with autism.” Very true, but it was a truth that didn’t help the anguish5) of those first two years, when the dominant message is: “Hurry! Early intervention is crucial, before his neural pathways are set! Save your child from autism before it’s too late!” How do you “save your child” from something when you don’t know what that something is? Or when nobody even knows what causes it?

自闭症的症状因人而异，差异很大，并随着时间变化。有一个经久不衰的格言：“如果你遇到一位身患自闭症的人，你只会了解一位身患自闭症的人。”一点都没错，但这一事实一点也没有减轻我前两年的苦恼，因为当时一个首要的信息是：“快点！在他的神经通路建立前，早期的干预是必要的！把孩子从自闭症中救出来，要不就晚了！”你还不知道某事物是什么的时候，或者没人知道这种事物的起因的时候，你如何把“孩子从中救出来”？

The question I encountered from friends, family and relatives—and our second speed bum—was: “So how autistic is he?” Conditions like deafness or visual impairment can be measured on a scale. Autism laughs at scales. Our son’s diagnosis was conducted via the snazzily6) named Disco test: Diagnostic Interview for Social and Communication Disorders. Disco is dismal. It involves a mammoth7) seven hours of parental interviews and a meeting with the child, but doesn’t distinguish between what a child can’t do and what a child won’t do when asked, as far as I could tell. It seemed that a bright examiner capable of engaging a child’s attention would arrive at a different result from a tired, unimaginative examiner—implying that Disco’s truest measurement is the tester’s skill at administering Disco.

我遇到的第二个障碍来自朋友、家人以及亲戚。他们会问：“他的自闭到什么程度了？”耳聋和视力障碍这样的毛病可以用某种计量标准来测量，自闭症却没有什么尺度。我儿子是通过一种测试才确诊的，这种测试有个时髦的名字，叫做迪斯科(Disco)测试，这是缩略语，全称是Diagnostic Interview for Social and Communication Disorders (社交与沟通紊乱症诊断访谈)。这种测试耗时特别长，包括七个小时与家长的访谈，还有与孩子的会面。但据我看来，该测试在对孩子提出要求时后，并不能区分孩子不能做什么与不愿意去做什么。一个聪明而又能够吸引孩子注意力的测试员得出的结论可能与一个疲惫不堪而又缺乏想象力的测试员完全不同，这就表明迪斯科测试真正的衡量结果取决于测试员开展测试的技巧。

“Degrees of severity” labels are inherently subjective. Furthermore, the current language of autistic degrees bring me out in a rash8). For personal use, I deploy a system based on my printer’s ink cartridges9): yellow is at the Asperger10)’s end of the spectrum11), cyan is in the middle and magenta is the most hardcore. “So how autistic is your son, exactly?” “Well, his sensory processing is pretty cyan these days. Speech-wise, he’s light magenta. A nice canary yellow when it comes to motor control and memory functions.”

“严重程度”的标签有内在的主观性。此外，目前有关自闭程度的描述也让我起鸡皮疙瘩。我个人用的是一套基于我打印机墨盒的用语系统：黄色处于色谱上阿斯伯格症所在的那一端，青色处于中间，而品红色处于最中心的位置。“那么你儿子自闭到什么程度？”“嗯，这些天他的感觉处理能力是特别青。在言语表达方面，就是淡淡的品红色。运动控制和记忆功能不错，达到了漂亮的淡黄色。”

Anyway, circa12) 2010 things were pretty grim in our house. My son still wasn’t talking; his eye contact was fleeting; he didn’t do bedtime; and he was prone to meltdowns, which meant an uncontrollable bout of sobbing while hitting his own head or banging it on the floor.

大约在2010年，我们家的情况变得相当糟糕。我儿子还是一直不说话，眼神交流很飘忽，不睡觉，很容易整个人就会崩溃，崩溃时一边不可控制地哭泣一阵，一边敲打自己的头部或是撞向地板。

Around this time, my wife ordered a book online called The Reason I Jump. It was written by a 13-year-old boy from Chiba prefecture in Japan called Naoki Higashida. Naoki’s autism is designated as severe and non-verbal, but he can, with intense effort, write via an alphabet grid.

大概在那个时候，我的妻子从网上订购了一本书，叫做《我跳跃的原因》。这本书是一位来自日本千叶县的13岁男孩写的，男孩名叫东野直树。直树的自闭症很严重，不能说话，但是通过艰苦的努力，可以通过字母网格进行写作。

As my wife read sections of The Reason I Jump aloud at the kitchen table, we recognised many of our son’s traits, and found many of Naoki’s explanations for these behaviours plausible. The book is made up of short Q&A chapters, and some of the questions were ones we badly wanted to ask our son: What’s with the head-banging? Why the tears or laughter with no visible cause? How can we help you more usefully? Naoki’s autism is, of course, Naoki’s own autism, but we found plenty of overlap with our son’s condition, and the book provided answers, corrected misconceptions and filled in blanks. Even chapters that didn’t apply to our son directly helped us by highlighting the gap between the “what you see” and the “what’s inside” of non-verbal autism. They also testified to Naoki’s ability to feel the whole gamut13) of human emotions and to view situations from other people’s perspectives.

我妻子在餐桌旁大声朗读《我跳跃的原因》的一些章节，这时我们才辨认出儿子的许多自闭症特征，并发现直树对这些行为的许多解释是有道理的。这本书是由简短的问答章节组成的，其中一些正是我们急切地想问儿子的问题：撞击头部是怎么回事？为什么无缘无故地流泪或大笑？我们该如何更有效地帮助你？当然，直树的自闭症是他自己的自闭症，但我们也发现了许多其与我们儿子相似的地方，并且这本书都提供了答案，纠正了错误的概念，并填补了空白。有些章节尽管不能直接适用于我们儿子，但也可以向我们揭示非言语自闭症患者身上“你所看到的现象”和 “他们内心世界”之间的差异，从而又对我们有直接的帮助。这些章节也证明，直树可以感受到人类的全部情感，并能从他人的角度看待事物。

Thanks to the book, my wife and I found ourselves modifying our interactions with our son. We engaged with him more, expected more back, and followed Naoki’s advice. Our son responded positively. He began using a few words, his understanding bloomed, his self-harming dropped away and he was happier.

***

多亏了这本书，我和妻子调整了与儿子之间的互动。我们与他的接触更多了，也期待他有更多的反馈，同时也遵循了直树的建议。儿子积极地回应，他开始使用一些词汇，理解力变好了，自我伤害的行为变少了，他也更快乐了。

***

The word “autism” was first used as early as 1910, by Swiss psychiatrist14) Eugen Bleuler, to describe a state in which “thought is divorced both from logic and reality.” Autism as a psychiatric diagnosis, with no basis in biology, hobbled15) on through the 1920s and 1930s as a form of childhood schizophrenia16). In 1943, Austrian-born psychiatrist Leo Kanner nominated autism as a disorder in its own right. Kanner deserves kudos17) for identifying a syndrome badly in need of recognition, for naming it and for encouraging early support groups. Unfortunately, he went with the flow18) of mother-blaming in the 1950s and attributed autism to “a genuine lack of maternal warmth”, though he did appear to recant19) towards the end of his life—unlike the Darth Vader of autism infamy20), another Austrian-born American, Bruno Bettelheim. This Chicago-based propagator21) of the “refrigerator mother” theory of autism published his hugely influential text, The Empty Fortress, in 1967. This contained such pearls22) as: “The precipitating23) factor in infantile24) autism is the parent’s wish that his child should not exist.”

“自闭症”一词早在1910年就被瑞士精神病专家尤金·布鲁勒首次使用，用来描述“思维与逻辑、现实都脱离”的一种状态。自闭症作为一种精神病学诊断，并没有生物学基础，在20世纪二三十年代被视作一种儿童精神分裂症，一直不大为人承认。1943年，出生于奥地利的精神病专家利奥·坎纳指出自闭症是一种独立存在的紊乱症状。坎纳是值得赞美的，因为他确认了一种急需承认的综合征，并为其命名，同时也鼓励早期的互助小组。不幸的是，20世纪50年代他跟随了“指责母亲”的潮流观点，将自闭症归因于“真正缺乏母亲的温暖”。不过，他在去世前放弃了这一言论，这与因为自闭症主张而声名狼藉的恶魔、另外一位奥地利出生的美国人布鲁斯·贝特尔海姆有所不同。贝特尔海姆是一位来自芝加哥的学者，到处传播“冰箱妈妈”这一自闭症理论。他于1967年出版了一部极具影响的书，叫做《空空的城堡》。书中包含这样的“亮点”：“婴儿期自闭症的诱发因素是，父母希望孩子不应该存在。”

Describing Bettelheim as merely “wrong” is a kindness I don’t think he deserves, yet for years his thinking dominated the public discourse.

说布特尔海姆只是“错了”都过于仁慈，我觉得他不配，可是他的观点多年来都主导着公众论述。

Historical perspective lets us groan at Bettelheim, and feel a righteous disgust at other researchers in the 1960s, who electrocuted25) their test subjects with cattle prods to deter self-injury, or who dosed children’s hot chocolate with LSD26). The more ethical even obtained parental consent.

从历史的角度看，我们有理由为布特尔海姆感到难过，正义满满地厌恶20世纪60年代的研究人员，因为他们用赶牛棒来电击受试者，防止其自伤，或者向儿童的热巧克力中加入致幻剂。更讲良心的研究人员（做法）甚至得到了父母的同意！

The closer we get to the present day, however, the trickier it can be to discern solid science from “magical thinking” with scientific trappings.

然而，越是在今天，越难以分辨可靠的科学与带有科学陷阱的“奇异思维”。

So what are we still getting wrong about autism, and how do we get it right? My answers form a kind of wishlist. First up, is that we stop assuming a communicative impairment denotes a cognitive one. Let’s be wary of assuming that behind autism’s speechlessness lies nothing, or nothing to speak of. Instead, let’s assume that we’re dealing with a mind as keen as our own, and act accordingly. Talk to the person. Don’t worry if there’s no evidence he or she understands. Maybe there is evidence, but you’re not recognising it as such.

那么，我们对自闭症到底还有哪些误解呢？怎样才能纠正呢？我的答案可以构成一份心愿清单。第一个心愿是：我们不再假定交流障碍就意味着认知障碍。不要认为自闭症者的沉默代表无话或者无话可说。相反，我们应当认为：与我们交往的人，和我们一样意识敏锐、行动敏捷。亲自交谈，如果没有迹象表明他(她)能否理解，也不要担心。有可能是有迹象，但是你没有看出来而已。

My second wish is that diagnosis day and its aftermath27) don’t feel like a cursory28) death sentence with no hope of appeal. On my son’s diagnosis day, a psychologist gave us a photocopied report about how poorly our son had performed in the Disco, a platitude29) about him still being the same boy he was the day before; and our time was up. We went home, Googled “autism” and embarked on a two-year stress-fest of searching for a kindergarten that might take him, of searching for a home tutor, of jumping through hoops erected by a bureaucracy that feel designed to make you give up, and of chasing “cures.”

我的第二个心愿是诊断日及其造成的影响不要给人感觉像是草率的死亡判决，还没有申诉的希望。在我儿子确诊患有自闭症那天，一位神经专家给了我一份复印的报告，上面写着我们的儿子在迪斯科测试中表现得有多差劲，都是些陈词滥调，说我们儿子还是以前的老样子，我们的时间到了。我们回到家，用谷歌搜索了“自闭症”，开始进入长达两年的高压状态：寻找可能会接收儿子的幼儿园、找一位家庭教师、跨越政府机构设立的层层障碍(感觉这些障碍就是为了使人放弃)，寻求“治疗良方”。

I know that central government has forced local authorities to cut health services back to the bone30), and we’re all supposed to accept this as the natural state of things. But intelligent counselling, drawing on guidance from parents who have been there, would go a long way to saving the newly diagnosed from floundering31) as badly as I did. And, as it happens, cost very little.

我知道中央政府已经命令地方当局最大限度削减医疗服务，并且希望我们都应该接受这一政策，视之为常态。但是智慧的咨询加上有相同经历的家长的指导，对于刚确诊的自闭症患者家庭大有裨益，使其不至于像我之前那样苦苦挣扎，而且这花费的成本微乎其微。

The third item on my wishlist is, too predictably, better funding for education and adult care. The status quo obliges sleep-deprived autism parents and sympathetic school principals to be frontline activists, just to obtain statutory32) minimums. This is inhumane and illogical. Funding a special needs assistant now can create a future taxpayer. Not funding special needs education is a waste of a child’s mind. Speech and language therapy and occupational therapy can and do make big differences, if they are frequent and regular.

不难预测，我的第三个心愿是在教育和成年人医疗方面投入更多资金。当前的现状迫使睡眠不足的自闭症患者父母和富有同情心的校长成了前线的活动人员，只为了获得法定的最低款额。这是不人道也不合常理的。今天资助一位特教助手，明天就会多一位纳税人。不对特殊教育资助就是浪费孩子的智力。如果经常对孩子进行定期的语言治疗以及职业治疗，他们会发生翻天覆地的变化。

Lastly, I ask for more big-scale, better-funded research. Much historic wrong-thinking about autism was debunked by research foundations set up by well-connected American autism parents. Bright young scientists entered the field, attracted by the grants, and a genetic component in autism was spotted. More research followed. Answers to the same core questions I had after our son’s diagnosis—What is autism, and can it be made to go away?—remain elusive33) and debatable, but every decade the questions asked get better and the research more fruitful. Autism is now a multidisciplinary field with career-building roles for biologists, pharmacologists, geneticists, psychiatrists, neurologists and a whole platoon34) of other -ists.

最后，我请求开展更大规模、资金更雄厚的研究。许多历史性的错误观点都是由一些研究基金会揭露出来的，这些研究基金会则是由一些很有门路的美国自闭症儿童父母创立的。聪明的年轻科学家被津贴所吸引，进入该领域，发现了自闭症的遗传成分。更多的研究接踵而至。在儿子被诊断出自闭症后后我产生的一些核心问题，比如什么是自闭症？自闭症能消除么？虽然这些问题的答案始终难以确定，值得讨论，但是每隔十年提出的问题都更加有水平，研究成果也更丰富。自闭症如今成了一个跨学科的领域，生物学家、药理学家、遗传学家、精神病学家、神经学家还有其他许多“家”，都可在此领域大展身手，开创自己的职业。

In his book Far From The Tree, the psychiatrist Andrew Solomon quotes Nobel laureate Eric Kandel: “If we can understand autism, we can understand the brain.” Solomon adds: “That is a generous way of saying we will understand autism only when we understand the brain.” True, yet this is a call to mobilise, not a reason for despondency35). To study autism is a huge challenge. Let’s rise to36) it.

精神病学家安德鲁·所罗门在《离树很远》一书中引用诺贝尔奖得主埃里克·坎德尔的话说：“如果我们能够搞清楚自闭症，就能了解大脑”。所罗门补充道：“这是一种客气的说法，意思是我们只有了解大脑才能搞明白自闭症。”的确如此，不过这是呼吁行动，而不是为沮丧找借口。研究自闭症是个巨大的挑战，让我们来应对吧！

译 / 姚育佳谢翠英

英文注释

1. prevalence [?prev?l?ns] n. 流行，盛行；普遍；广泛

2. aversion [??v??(r)?(?)n] n. 厌恶，反感

3. evergreen [?ev?(r)?ɡri?n] adj. 永葆青春的；不衰的，持久的

4. adage [??d?d?] n. 谚语，格言

5. anguish [???ɡw??] n. (精神上的)极度痛苦，悲痛

6. snazzily [?sn?zili] adv. 时髦地，华丽地

7. mammoth [?m?m?θ] adj. 巨大的，庞大的

8. bring sb. out in a rash：使某人出疹子

9. cartridge [?kɑ?(r)tr?d?] n. 墨盒

10. Asperger：亚斯伯格综合征，是一种泛自闭症障碍，其重要特征是社交困难，伴随着兴趣狭隘及重复特定行为，但相较于其他泛自闭症障碍，仍相对保有语言及认知发展。

11. spectrum [?spektr?m] n. 谱，色谱

12. circa [?s??(r)k?] adv. [用在日期、数字等前面]大约在，接近于

13. gamut [?ɡ?m?t] n. 整个范围，全部

14. psychiatrist [sa??ka??tr?st] n. 精神科医生，精神病专家

15. hobble [?h?b(?)l] vi. 一瘸一拐地行走

16. schizophrenia [?sk?ts???fri?ni?] n. 精神分裂症

17. kudos [?kju?d?s] n. [单复数同] <口>名声；威信

18. go with the flow：随大众，随大溜

19. recant [r??k?nt] vi. (正式并公开地)撤回声明；放弃信仰(或主张等)

20. infamy [??nf?mi] n. 臭名；声名狼藉，臭名昭著

21. propagator [?pr?p??ɡe?t?(r)] n. 宣传者，传播者

22. pearl [p??(r)l] n. 有见识的评说，智慧的结晶(尤指反话)

23. precipitate [pr??s?p?te?t] vt. (突如其来地)使发生，促成；促使……加快

24. infantile [??nf?nta?l] adj. 婴儿(期)的，幼儿(期)的

25. electrocute [??lektr??kju?t] vt. 电击

26. LSD：D-麦角酸二乙胺(Lysergic acid diethylamide)，也称为“麦角二乙酰胺”，是一种强烈的半人工致幻剂。

27. aftermath [?ɑ?ft?(r)?m?θ] n. 后果；结果；(事件等)结束后的一个时期

28. cursory [?k??(r)s?ri] adj. 草草的，粗略的

29. platitude [?pl?t?tju?d] n. 老生常谈，陈词滥调

30. cut sth. back to the bone：把……减到最低极限

31. floundering [?fla?nd?(r)] n. 挣扎，踉跄；处于艰难之中

32. statutory [?st?t??t(?)ri] adj. 法定的，法律承认的

33. elusive [??lu?s?v] adj. 难以表述(或理解、分辨、捉摸)的；令人困惑的

34. platoon [/pl??tu?n] n. 一队，一组

35. despondency [d??sp?nd?nsi] n. 失望；沮丧

36. rise to：奋起应付；证明能够应付