与孤独症共处：奇迹的翅膀

你如何确定对孩子的治疗是恰当的？有那么多“治疗”“药品”和方法可以选择，你怎么就知道你选了对的那一个？如果它真的有效了，我们又从何而知？

Like most things in my life, my answers didn't evolve gradually; they hit me over the head. There's a story about a man so eager to "help" a butterfly into the world that he opens its chrysalis too soon. The result is tragic: the wings never develop properly, the butterfly cannot fly, and it dies. I tell this story to parents and educators who seek to force kids with autism to be something they are not, who pressure them into compliance or try to coerce them to be part of this world before they are ready. My experience with my son Neal -- who I adopted from a Russian orphanage at age two and who was diagnosed with autism a year later -- has taught me that we must yield to slow yet natural progress: caterpillar to chrysalis to beautiful creatures that can soar on their own. But it took me a while to learn this for myself.

如同生活中很多事情一样，这些问题的答案并非渐渐清晰，而是由我猛然惊觉。我听过一个故事说，一个人太急于“帮助”一只蝴蝶来到世界，就很早的打开了它的茧。故事的结局有些悲惨：蝴蝶还没有长好翅膀，它不能飞，最后死掉。这个故事，是要讲给那些试图强迫孤独症患儿变得不是自己、变得顺从、或者是在他们还没有准备好的时候就强制他们进入世界的家长和教育者们。我和我儿子Neal——这个俄国籍的孩子两岁时被我收养，又在一年后被诊断为孤独症患儿——相处的经验告诉我，我们必须服从于自然发展的缓慢：从毛虫变成茧，再从茧变成可以振翅飞翔的美丽生灵。然而我的确花了一些时间，才自己想明白这个道理。

I had a significant "a-ha!" moment when Neal was seven years old. I had been taking Neal out into the community quite a bit, trying desperately hard to have a normal life and fit in. Anything that Neal was interested in, I pursued. Because Neal loved butterflies, I was overjoyed to hear about a butterfly exhibit that was coming to the Los Angeles Natural History Museum. It sounded extraordinary, a "Pavilion of Wings." The brochure read, "Stroll through a beautifully landscaped exhibit, see Monarch butterflies, giant swallow tail butterflies and more." I couldn't wait.

在Neal七岁时，我经历了一个富有意义的得意瞬间。以前我常常带Neal去社区，极力想要融入正常的生活。我希望那儿能有一些Neal感兴趣的东西，任何东西都行。Neal喜欢蝴蝶，于是当听说洛杉矶自然历史博物馆要有一场蝴蝶展时，我简直是欣喜若狂。名字听起来就很特别：“翼之馆”。手册上写着，“穿行于美丽的全景展览之间，欣赏黑脉金斑蝶、大燕尾蝶等”。我迫不及待了。
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I prepared Neal with butterfly books and manuals. We acted out the life cycle of a butterfly. We crawled like caterpillars, munched on leaves and rolled ourselves into a cocoon and wait, wait, waited, until we developed wings. Then we flew around our house in a rainbow of laughter. I had often used this kind of creative play in my career as an acting coach for children. Being able to use these techniques with my own boy was even more rewarding. We had so much fun together.

我事先给Neal看了关于蝴蝶的书和手册，还把蝴蝶一生的循环表演了出来。我们像毛虫一样匍匐前进，对着叶子大嚼特嚼，把自己卷成一个茧，然后等啊，等啊，一直等到我们长好翅膀。最后我们在屋子里飞来飞去，划出一道道笑声的彩虹。我常常用这样有创造性的小剧的形式来教孩子表演。能够和我自己的儿子完成这些甚至有更多的回报——我们一起获得了太多乐趣。
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Finally, the exhibit opens, and on that day I get Neal into the car effortlessly and we head downtown to the museum. Neal is a little reluctant to walk across the large parking lot, but once he nears the exhibit, his eyes widen with excitement.

终于，展出开始了。那天我毫不费力地让Neal上了车，驶向博物馆。在经过大型停车场时Neal有一些不情愿，但一走近展览馆，他马上就兴奋地睁大了眼睛。

We enter the Pavilion. Neal is in awe: hundreds of butterflies in all shapes and colors flick and flutter around us. Neal loves the butterflies. He loves them too much. When he sees these familiar, angel-like creatures, he wants to get close to them, to smell them, to touch them. He starts reaching out ecstatically to touch each butterfly. Like King Kong snatching airplanes from atop the Empire State Building, Neal grabs for butterflies.

我们进入了展馆。Neal惊呆了：数百只各种形状颜色的蝴蝶在我们周围振翅轻舞。Neal喜欢这些蝴蝶，他实在是太爱它们了。当他看到这些熟悉的、天使般的生灵时，他想要离它们近一些，想嗅它们，想摸摸它们，他开始心醉神迷地伸手去摸每只蝴蝶。后来就像金刚在帝国大厦顶端抓飞机一样，Neal又开始抓蝴蝶。

"He's killing the butterflies!" shouts a little boy.

“他在杀害蝴蝶！”一个小男孩喊道。

"Butterfly killer!" screams a tiny girl.

“蝴蝶杀手！”一个小女孩尖叫着。

Now all the kids and adults are yelling, "Stop him! Get him! He's killing the butterflies!!!

后来所有的孩子和大人都在叫喊：“阻止他！抓住他！他在杀害这些蝴蝶！！！”

"Murderer!"

“凶手！”

This terrifies Neal. He grabs a plant and pulls it out of its pot. He knocks over other pots. The butterflies are flapping wildly. A security guard swoops in.

这一切吓坏了Neal。他抓住一株植物，把它从盆里拔起，又碰倒了其他花盆。蝴蝶扑扇着翅膀四散开来，一个保安冲了进来。

"I am so sorry," I keep saying. "I am so sorry. He has autism. He loves butterflies. He didn't mean to harm them."

“我很抱歉。”我不停说着，“我很抱歉。他得了孤独症。他喜欢蝴蝶。他不是故意要伤害它们。”

"Get that kid out of here!" someone shouts, loudly enough to be heard over the others who are still screaming at Neal.

“把那孩子带走！”有人嚷着，声音大的足以盖过其他人对Neal的尖声叫喊。

But Neal doesn't want to leave. He is actually quite amused by the commotion he's causing, and I can't get him out of the exhibit. Finally, I see some plastic, made-to-look-real butterflies on the gift shop counter. I rush to the front of the line. People glare at me for cutting in. I beg to buy one of the pretend Monarchs. I can't wait for change, so I place a $10.00 bill on the counter, grab a fake butterfly, and race back to Neal. I use this insect amulet to coax Neal out of the Pavilion, through the long parking lot and back to the car.

然而Neal并不想离开。事实上他把自己引起的混乱当做了一种娱乐，我也没有办法把他带出展览。终于，我在纪念品店的柜台上看到了一些塑料的仿真蝴蝶。于是我顶着排队人们的怒目而视，冲到队伍的最前面，请求买那个仿真的黑脉金斑蝶。我等不及找钱，就在柜台上放了10块钱，抓起仿真蝴蝶就跑回到Neal那儿。我用这个法宝一般的假昆虫哄Neal出了展览馆，经过长长的停车场回到了车上。

Sitting in the car, Neal and I stare blankly out the front window. I look at Neal. I see the puzzled look in his eyes give way to sadness. I start to cry. Neal stares back at me. He gets teary-eyed. He's ashamed of what happened. We look long at each other. The tears give way to smiles. The smiles become laughter. It's one of those situations in which everything is so terrible, that it's ultimately absurd.

坐到车上后，Neal和我呆呆地看着车窗前方。我看了看Neal，看见他困惑的眼神中流露出的悲伤。我开始哭泣。Neal转过头注视着我，眼中也有泪光闪烁。他对发生的一切感到有些惭愧。我们相互注视了很久，慢慢破涕为笑。又从微笑变成大笑。这就是那种先是处处那么糟糕可怕，最终又因此觉得荒唐可笑的情景之一。

But that night I pray. "Dear God, I need help. We need help. It's just not working."

但是那个晚上我还是祈祷着：“亲爱的上帝，我需要帮助。我们需要帮助。一切还是没有好转。”

I fell apart that day. I surrendered to the fact that our lives are just going to be a bit different from the norm. "Abbynormal," I like to say. From that day on I became 100 percent committed to keeping Neal at home and bringing in creative folks -- actors, musicians, writers -- to join his world, until he was ready to be in ours. Gradually, inch by inch, Neal did, indeed, emerge from his cocoon as a glorious butterfly -- but on his own schedule, not mine. Among many other things, now Neal can sit patiently and watch a butterfly float by without any need to "possess it."

那一天我崩溃了。我终于向现实投降，那就是我们的生活和正常生活的确有些不同。我想说的是，确实有些“不正常”。从那天起我完全致力于让Neal待在家里，并且把一些有创造力的人们——演员、音乐家、作家——带入他的世界，直到他准备好进入我们的世界。渐渐地，一步步地，Neal实际上，的确如同美丽蝴蝶一样从它的茧中显露出来——但是是按他自己的时间表，而不是我的。Neal已经有很多进步，包括可以耐心地坐着看蝴蝶飞舞，而没有任何想要得到它的念头。

Through writing my memoir, Now I See the Moon, I was able realize that some things in life, as in nature, cannot be rushed. Luckily, the right teachers, the right programs, the right books and the right methodologies always appeared just when I needed them most. Neal will always be my guide as to what he is ready for and when he's ready for it. A caterpillar knows best when he is ready to break out of the cocoon and emerge as the graceful butterfly he was always capable of becoming.

通过写自述回忆录《Now I See the Moon》，我意识到生活中的很多东西，如同自然中的一样，是无法匆忙行事的。幸运的是，适合的老师、适合的治疗计划、适合的书、适合的方法，总是在我最需要的时候出现。关于Neal为什么样的进步做好了准备、何时做好了这种准备，我将永远听取Neal的引导。最知道毛虫何时准备好破茧而出、何时可以作为优雅的蝴蝶振翅飞翔的那一个，是毛虫自己。