PBS高端访谈:我们需要在现实世界中接纳自闭症儿童

JUDY WOODRUFF: According to the Centers for Disease Control, one in 68 children have autism spectrum¹ disorder². It's a diagnosis³ that can affect a person's social, communication and motor skills. It is diagnosed four times more often in boys than girls. Whitney Ellenby has a son with autism. And, tonight, she shares her Humble⁴ Opinion on just who should be helping⁵ him.

WHITNEY ELLENBY, Author, "Autism Uncensored": Imagine a scene. A 5-year-old boy holding his mom's hand heads into a packed auditorium⁶ to see an Elmo show. Suddenly and without warning, he breaks into a full-body tantrum. He starts shrieking⁷ at high pitch, pounds his head with both fists, and rams⁸ his skull⁹ into the floor. Everyone is watching, horrified¹⁰ and afraid. This kid obviously doesn't want to go into that show. And just as they expect them to leave, his mother leaps on top of him full force, pins him to the ground and drags him inch by inch towards the show, obviously against his will. This child, my child, has autism and an intense fear of unfamiliar¹¹ places. But he can make it into that show, and when he does, he will have made a small step to changing the course of his life. But it will require what I call burden-shifting. The burden begins with me, the parent of the autistic child, to disclose his disability. My child has autism. I'm working with him to overcome his fears. That's it. That's all I owe you. And notice that I am not apologizing for his autism, simply identifying it. Many parents of autistic children will resist this idea: Why should I have to explain anything? My life is already hard enough. Because a tantrum is an opportunity to educate. I believe we advocate best for our children when we put their autistic behaviors in context, rather than let others assume the worst.

We advocate best if our words are not angry or defensive¹², just factual. My child has autism. I'm doing the best I can. But now the burden shifts to you, general public, all you bystanders who don't know what to do when you witness the unthinkable. And the answer is tolerance¹³. You have a duty not to comment cruelly, not to insist we leave. A duty to temporarily tolerate the screaming, even if it makes you uncomfortable. Because if you're uncomfortable for 20 minutes, imagine how it feels for the parent who lives with it. Given our numbers, public tantrums should be happening daily, hourly. But they are not, because we parents feel so ashamed of tantrums, we keep our children locked up at home. In my humble opinion, this has to stop, because there is no substitute for real world exposure. And a child with autism who is kept at home cannot engage with the world. And if he can't engage, he can't practice overcoming his fears to participate. So, if we want people with autism to become productive and contributing members of society, it must start here. If we want true inclusion, we're all going to have to be uncomfortable for a little while, as we all accept our burden.

茱蒂·伍德瑞夫：根据疾病控制中心统计，每68个孩子中就有一个患有自闭症谱系障碍。这种障碍可影响一个人的社交及运动技能。这种障碍，男孩的发病率比女孩高四倍。惠特尼·艾伦比有一名患有自闭症的儿子。今晚，她就“谁应该帮助他”在Humble Opinion栏目分享观点。

惠特尼·艾伦比，《Autism Uncensored》作者：想象一个场景。一个五岁的男孩牵着妈妈的手步入人满为患的礼堂，去看Elmo表演。突然，他毫无征兆地，大发脾气。他开始尖叫，用两个拳头猛击自己的头，并将头撞向地板。大家都在看，内心充满恐惧。这个孩子显然不想去看演出。正当那些人希望他们离开时，他的母亲跳到他身上，用尽全部力量，将他压向地面，一寸一寸，将他拖进剧场，明显，这种举动违背了孩子的意愿。这个孩子，我的孩子，患有自闭症，不熟悉的环境给他带来了一种强烈的恐惧。但他能去看演出，当他这样做的时候，他会在他的生命历程中，做出一点点小的改变。但这需要一样东西，即我所谓的负担转嫁。这种负担开始于我，作为自闭症儿童的父母，去透露他的病情。我的孩子有自闭症。我与他合作，克服自己的恐惧。就是这样。这是我对你全部的歉疚。请注意，我不是在为他患有自闭症而道歉，只是确认一下。许多自闭症儿童的父母会拒绝这样的想法：“我为什么要解释？我的生活已经足够艰难。因为一次脾气爆发就是一次教育机会。我相信，我们为孩子们所做的最好的辩护，就是当我们把自闭症行为放在背景中，而非让人们认为这是最糟糕的一面时。如果我们的言辞中没有生气或防御，有的只是事实，那么我们的辩护就是最好的。我的孩子患有自闭症。我正倾尽我的所能。但现在，责任转移到你们，公众，你们这些，当亲眼目睹了这不可思议的一幕，不知道该怎么办的旁观者。答案就是宽容。你有责任在于不去苛刻地评论，不去坚持让我们离开。有责任暂时忍受尖叫，即使它让你不舒服。因为如果你的不舒服持续20分钟，想象一下被这种不舒服，时刻困扰着的父母，又作何感受。鉴于我们的数字，他们在公众场合发脾气，应该每天，每小时都会发生。但他们没有，因为我们父母为这些脾气感到羞愧，我们把孩子锁在家里。在我看来，这种做法必须停止，因为真实世界无法替代。患有自闭症的孩子，如果被关在家里，它就无法与世界接触。如果他不能接触世界，他就无法练习克服恐惧，融入世界。所以，如果我们想让自闭症患者成为社会生产力，做个对社会有贡献的人，那么必须从这里开始。如果我们想要真正的包容，我们都不得不经历短暂的不适，因为我们都得接受自己的重担。

1 spectrum   

n.谱，光谱，频谱；范围，幅度，系列

参考例句：

• This is a kind of atomic spectrum.这是一种原子光谱。
• We have known much of the constitution of the solar spectrum.关于太阳光谱的构成，我们已了解不少。

2 disorder   

n.紊乱，混乱；骚动，骚乱；疾病，失调

参考例句：

• When returning back,he discovered the room to be in disorder.回家后，他发现屋子里乱七八糟。
• It contained a vast number of letters in great disorder.里面七零八落地装着许多信件。

3 diagnosis   

n.诊断，诊断结果，调查分析，判断

参考例句：

• His symptoms gave no obvious pointer to a possible diagnosis.他的症状无法作出明确的诊断。
• The engineer made a complete diagnosis of the bridge's collapse.工程师对桥的倒塌做一次彻底的调查分析。

4 humble   

adj.谦卑的，恭顺的；地位低下的；v.降低，贬低

参考例句：

• In my humble opinion,he will win the election.依我拙见，他将在选举中获胜。
• Defeat and failure make people humble.挫折与失败会使人谦卑。

5 helping   

n.食物的一份&adj.帮助人的，辅助的

参考例句：

• The poor children regularly pony up for a second helping of my hamburger. 那些可怜的孩子们总是要求我把我的汉堡包再给他们一份。
• By doing this, they may at times be helping to restore competition. 这样一来, 他在某些时候,有助于竞争的加强。

6 auditorium   

n.观众席，听众席；会堂，礼堂

参考例句：

• The teacher gathered all the pupils in the auditorium.老师把全体同学集合在礼堂内。
• The stage is thrust forward into the auditorium.舞台向前突出，伸入观众席。

7 shrieking   

v.尖叫( shriek的现在分词 )

参考例句：

• The boxers were goaded on by the shrieking crowd. 拳击运动员听见观众的喊叫就来劲儿了。 来自《简明英汉词典》
• They were all shrieking with laughter. 他们都发出了尖锐的笑声。 来自《简明英汉词典》

8 rams   

n.公羊( ram的名词复数 )；(R-)白羊（星）座；夯；攻城槌v.夯实（土等）( ram的第三人称单数 )；猛撞；猛压；反复灌输

参考例句：

• A couple of rams are butting at each other. 两只羊正在用角互相抵触。 来自辞典例句
• More than anything the rams helped to break what should have been on interminable marriage. 那些牡羊比任何东西都更严重地加速了他们那本该天长地久的婚姻的破裂。 来自辞典例句

9 skull   

n.头骨；颅骨

参考例句：

• The skull bones fuse between the ages of fifteen and twenty-five.头骨在15至25岁之间长合。
• He fell out of the window and cracked his skull.他从窗子摔了出去，跌裂了颅骨。

10 horrified   

a.(表现出)恐惧的

参考例句：

• The whole country was horrified by the killings. 全国都对这些凶杀案感到大为震惊。
• We were horrified at the conditions prevailing in local prisons. 地方监狱的普遍状况让我们震惊。

11 unfamiliar   

adj.陌生的，不熟悉的

参考例句：

• I am unfamiliar with the place and the people here.我在这儿人地生疏。
• The man seemed unfamiliar to me.这人很面生。

12 defensive   

adj.防御的；防卫的；防守的

参考例句：

• Their questions about the money put her on the defensive.他们问到钱的问题，使她警觉起来。
• The Government hastily organized defensive measures against the raids.政府急忙布置了防卫措施抵御空袭。

13 tolerance   

n.宽容；容忍，忍受；耐药力；公差

参考例句：

• Tolerance is one of his strengths.宽容是他的一个优点。
• Human beings have limited tolerance of noise.人类对噪音的忍耐力有限。