PBS高端访谈:我们需要在现实世界中接纳自闭症儿童（在线收听）

JUDY WOODRUFF: According to the Centers for Disease Control, one in 68 children have autism spectrum disorder. It's a diagnosis 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 Humble Opinion on just who should be helping him.

WHITNEY ELLENBY, Author, "Autism Uncensored": Imagine a scene. A 5-year-old boy holding his mom's hand heads into a packed auditorium to see an Elmo show. Suddenly and without warning, he breaks into a full-body tantrum. He starts shrieking at high pitch, pounds his head with both fists, and rams his skull into the floor. Everyone is watching, horrified 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 unfamiliar 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 defensive, 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 tolerance. 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。