什么才是有效的帮助?

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  Kristina is a Professor of Classical Literature, and her 11-year-old son is a typical autism. Dora is an artist and a patient of Asperger syndrome. They met by chance on the website of Change. org, and started a joint blog about autism. One of the articles lists the top 10 controversial issues about autism in society. Since the authors’ perspectives are very peculiar, this article has provoked a lot discussion in the public. The bone of contention is the proper recognition in society and the needs of people with autism.
  Kristina是一个古典文学教授,她11岁的儿子是典型自闭症患者。Dora是一个艺术家,同时也是阿斯伯格综合症患者。两人因偶然的机会在Change.org网站上相遇,并合作撰写了一个有关自闭症的博客。其中一篇博文罗列了目前人们对于自闭症存在的十项争议,鉴于二者的特殊身份以及文章的独特视角,此文在社会各界引发了激烈的争论。争论的焦点主要集中在对自闭症患者的正确认识以及他们的需求问题。
  Prejudice in Society vs. Equal Treatment
  社会偏见vs平等化对待
  Changeling; Shell; Trapped behind walls of autism; Mysterious and puzzling; Incapable of empathy; A disease like cancer; Retarded; Unteachable; Lost cause; Suffering; Better off dead.
  Genius; Savant; Mysterious and awe-inspiring; Awesome at computers; Great at math; Can count anything perfectly with just a glance, just like Rainman; Just like Einstein.
  低能儿,不与人来往,受困于孤独症世界,神秘而难懂,没有同情心,像癌症一样的疾病,智力低下,无法教育,没有希望,活受罪,死了最好。
  天才,怪才,神奇得让人叹为观止,精于计算机,擅长数学,像“雨人”一样能一瞥而知数,像爱因斯坦一样的人。
  These phrases were listed by Kristina and Dora to illustrate how people think of patients with autism. They noted that autistic people are alternately demonized or sensationalized, and in either case stereotyped. “Autistic people are, however, none of these, They are human beings, complete in themselves, regardless of their level of support needs. And these stereotypes do little more than dehumanize and dismiss their very real personhood. Dehumanization makes it all too easy to justify abuse, neglect, and violation of human rights. If dehumanization of autistic people is to end, autistic people must be considered as people, which means understanding that not everyone with a particular label is going to conform to an assumption.”
  Kristina和Dora在自己的博文中罗列了一系列外界对自闭症患者的看法,并且在文中指出这种或妖魔化,或过度吹捧的方式其实都是偏见所致。“实际上,孤独症人士并非如人们所描述的那样,不论功能高低,他们都是自成一体的人。上述成见相当于抽掉了他们的人性,不认为他们是和普通人一样的人。这样去人性化的后果就是使得伤害、忽视、和侵犯孤独症人士人权的行为很容易找到借口。要想停止这种对孤独症人士的去人性化,就要将自闭症人士当做和普通人一样平等看待,也就是说人们必须明白这样一点:不要以为一个人被贴上了某一标签就一定符合自己脑子里想当然的主观臆测。”
  Assistance Instead of “Cure”
  协助而非“治愈”
  A number of popular theories about what causes autism exist in the public mindset, and include factors such as parental age (of the father as well as of the mother), the levels of precipitation in the area, ultrasounds, and poisoning from heavy metals, and this list only seems to grow. In the end, focusing on what causes autism diverts attention away from considering issues of pressing concern to actual autistic persons and their families today, such as housing, employment and long-term supports for individuals who will need such.   Although scientists believe autism has distinct causes that often co-occur, it becomes increasingly evident that the cause is most likely genetic in origin. It means that most patients with autism have innate deficits and cannot be cured. Nonetheless, claims that children have been "cured" from autism and have got rid of the autism label have been reported and are often given excessive attention in the media. Similarly, focusing on recovery also distracts from paying attentions to the actual needs of autistic individuals. What’s more, parents may be motivated and put all their energy and resources into so-called "cures" for autism, instead of focusing on the needs and education of children.
  随着自闭症患者数量的逐年高涨以及人们对自闭症认识的越发广泛,有关自闭症的成因也开始出现各样版本,其中包括父母的年龄,沉积的化学物质,超生波,重金属中毒等等。对成因的纠缠不休分散了人们的注意力,使得一些对自闭症人士和他们的家庭来说更为重要的问题没有得到足够的关注,这些问题包括住房,就业,和对患者提供长期的支持服务等。
  即便科学家们认同自闭症的病因并非单一,但是,越来越多的研究证据仍是将自闭症的病因指向了遗传因素。这同时意味着,大部分自闭症患者是与生俱来,基本无法治愈。然而,现实媒体却报导了诸多关于自闭症儿童被“治愈”从而摘掉了自闭症帽子的事例,从而使得人们将注意力全部集中在了患者的康复上而完全忽视了患者的真正需求。父母们也可能因此而倾其所有去“治愈”孩子,而不是把精力放在孩子的需求和他的教育上。
  Kristina and Dora appealed to the public in terms of the above conditions that the treatment for autism should be conducted in forms of communication, acceptation, and assistance. We should exploit every cause that may encourage people with autism to blend in the community, and provide the patients with education of self-improvement. Moreover, the awareness of treating autistic people equally is supposed to be publicized, in order to build a favorable atmosphere in society for them. All these are more helpful than seeking methods of “cure”.
  Megan is at the low-functioning end of the spectrum. Her father, Kevin Leitch, writes a blog about his experience of bringing her up. "When she was diagnosed, it was shocking beyond belief," he says. "We felt like our world had been taken away. But in a reasonably short space of time, we realized Megan wasn't dying, she wasn't ill. I don't want to paint a rose-colored view of our lives, but it's far from doom and gloom. Megan still has meltdowns, or tantrums, because she finds it very difficult to communicate. She can self-injure and at other times go for us. But there are things that Megan brings to our lives that more than compensate for the difficulties."
  If a cure were found tomorrow, he wouldn't give it to his daughter. "I want to put her in a position where she can advocate for herself what she wants," he says. Kevin believes that the big problem for parents whose children have just been diagnosed as autistic is that they are told to do everything they can to "rescue" their child from autism. "Whether that's going to America to have them chelated [a therapy that removes metal toxins after it was suggested that autism could be linked to mercury poisoning] or changing their diet or any number of other things……Autism is seen as this devastating condition but accepting the child and working on the child's strengths will help them to develop positive self-esteem," he says.   针对上述情况,Kristina和Dora在博文中呼吁对自闭症患者的治疗应当采取沟通、接纳、和协助的方式,积极开发各种渠道以促进自闭症患者融入社区、向自闭症人士提供自我改善的教育和疗法以及教育公众对自闭症人士采取更大限度的接纳,而非力争将自闭症患者“治愈”。
  凯文·里奇(Kevin Leitch)的女儿梅根(Megan)处于孤独症谱系的低端。凯文在自己的博客里写了抚养孩子的经历。“梅根刚得到诊断时,我们精神上受到了极大打击。我觉得我们的世界垮掉了。但是过了一段时间后,我明白了,这并不是说Megan要死了或是生病了。虽然我不能把生活描绘成玫瑰色,但是它也不是一片灰暗。梅根还是会发脾气,因为交流对她来说太困难。她也会自伤或攻击我们,但是梅根给我们的生活带来的东西大大补偿了这些问题。”
  凯文同时表示假如突然有一天有一个治愈的方法出现,他也不会在女儿身上使用。“我希望能帮助她学会表达她自己的想法。”凯文认为,那些孩子刚刚获得诊断的父母面临的问题是,人们告诉他们要尽一切力量把他们的孩子从孤独症中“拯救”出来。“或者是去美国做排毒(一种排除身体里的有害金属的疗法,因为据说孤独症与汞中毒有关),或是改变饮食,或是做其他的什么事情……人们总是把孤独症看得很可怕,其实如果能接受孩子,发挥他们的长处,就能帮助他们建立起自尊心。”
  His view is shared by those who are involved in researching autism. "I do think there is a benefit in trying to help people with autism-spectrum conditions with areas of difficulty such as emotion recognition," says Professor Simon Baron-Cohen, the director of the Autism Research Centre in Cambridge. Autism is both a disability and a difference. We need to find ways of alleviating the disability while respecting and valuing the difference."
  一些研究自闭症的学者也持同样的观点。“我认为,在某些方面给在孤独症谱系里的人们以适当的协助,比如教他们辨认表情,是大有裨益的,”剑桥的孤独症研究所所长西蒙·巴伦-科恩(Simon Baron-Cohen)教授如此说道。“自闭症既是一种残疾,也是一种差异。我们需要找到适当的途径救治残疾,同时尊重和珍视差异。”
  Prejudice in Society vs. Equal Treatment
  社会偏见vs平等化对待
  Although Kristina and Dora are not in favor of wasting time and money for seeking a “cure”, they stress that it does not means giving up looking for proper help.
  虽然,Kristina和Dora以及众多研究自闭症的学者均呼吁不要试图在“治愈”自闭症患者上浪费时间和金钱,但是他们也同时强调,这并非就意味着放弃寻找对自闭症人士合适的帮助。
  Margret Ericsdottir is an Icelandic filmmaker and her son was diagnosed with non-verbal Autism. After years of trying to make sense of Keli’s autism and exhausting every accessible treatment option that she could find, Margret, along with her husband and their two healthy, typically developing sons, were despondent about Keli’s prospects. Margret decided to make a documentary about Autism in an attempt to heal her own personal pain, but what she discovered would permanently shift her family’s destiny.
  While in production on The Sunshine Boy, Margret discovered a breakthrough for her son. “We saw a boy who was just as severely autistic as Keli, named Dov Shestack. He was communicating on a letter board. He was completely non-verbal with very limited body awareness, just like Keli. But he was communicating!” It was in that moment that Margret began to experience hope. “God, is this something I can do with my son, Keli?!” It was her first thought. Margret immediately took action. “I went to the same clinic that Dov Shestack had gone to, to learn to communicate. Soma Mukhopadhya, a remarkable teacher, taught Keli to communicate on a letter board.” Keli, who had been diagnosed as having the developmental and intellectual capacity of a two-year-old, began to express intelligent and emotionally aware thoughts and feelings as his fingers moved across the alphabet on the letter board to form words and sentences.   As Keli’s communication skills flourished with the use of a letter board, he began to compose poems and short stories about living with non-verbal autism. He wrote a poem called “The Golden Hat,” about a boy who had a magical hat that would talk for him, allowing him to break free of his inability to speak.
  冰岛电影人(Icelandic filmmaker)Margret Ericsdottir的小儿子Keli被诊断为患有低口语自闭症(non-verbal Autism),在花了好几年的时间试图理解Keli的自闭症并穷尽了所有能找到的治疗方法后,Margret和她的丈夫以及他们另外两个健康成长的儿子都对Keli的将来不再抱任何希望。对自己儿子的爱莫能助让Margret深感自责,她决定拍摄一部有关自闭症的纪录片以对儿子做一些补偿。惊喜地是,拍摄过程中的一些发现,却让Margret一家人重新燃起了希望。
  Margret在纪录片《阳光男孩》的拍摄过程中发现了治疗她儿子的突破口。“我们见到了一个自闭症和Keli一样严重的男孩,他叫Dov Shestack。他完全无法说话,身体感官也很迟钝,就像Keli一样。但他可以通过一个字母板来和外界交流!”就在那时Margret开始有了希望。“老天,这个方法我能不能也在我儿子身上试试?!”这是浮上她脑海的第一个想法。Margret立即开始了行动。“我去了Dov Shestack去的那家诊所,学习如何沟通(和Keli)。Soma Mukhopadhya,一位非凡的老师,教会了Keli如何用字母板来与人交流。”自此之后,Keli,这个被诊断为心智只有2岁小孩程度的孩子,开始用手指在字母板上滑动字母组成词组和句子,表达出具有智慧和情感意识的想法和感受。
  在Keli的沟通能力靠着使用字母板而大幅提高后,他开始创作关于对抗低口语自闭症的诗歌和短篇故事。他写了一首叫《金帽子》的诗,诗歌讲一个男孩用一顶金帽子代替自己说话,从而摆脱了自己不能说话的束缚。
  Keli’s experience also touched the Oscar winning actress, Kate Winslet, who decided to establish a fund. The fund will aim to bring awareness to the tens of millions of children and adults who are currently living with a severe form of non-verbal autism. The Golden Hat Foundation was born. “We are trying to use this foundation to enlighten. But first we have to make the people aware, especially the parents of autistic children that we shall never give up communicating with the children just because they cannot talk.”
  Keli’s future looks brighter now. Margret told us Keli has always wanted to be a writer. He wants to write some film scripts, and also has interests in music. Margret feels glad that she didn’t do the same thing with other parents of autistic children – require the children to blend in society as normal people do. She didn’t ask her son to do something beyond his capacity. Margret also thanks herself for making the decision to film this documentary instead of giving up hopes.
  Keli的经历同时打动了奥斯卡影后(Oscar winning actress)Kate Winslet,Kate决定同Keli的母亲Margret共同创办一个基金会,旨在唤起人们对数以百万计患有重度低口语自闭症的儿童以及成人的关注。“金帽子”基金会(The Golden Hat Foundation)由此诞生。“我们利用这个基金会来开启智慧。但首先我们需要教育大众,尤其是自闭症患儿的家长,不要因为自己的孩子无法开口说话,而放弃与他们的交流。”
  如今的Keli,未来看起来更加光明,据其母亲Margret所述,Keli想当个作家,想写电影剧本,而且还对音乐很感兴趣。Margret庆幸自己没有像部分自闭症患儿家长一样极力要求孩子以正常儿童的方式融入社会,让孩子去做一些力所不能及的事,同时也庆幸自己选择拍摄了这样一部纪录片,而不是对儿子直接放弃。
  Similarly, another mother of an autistic child wrote a book called Now I See the Moon about her experience to bring her son up. She wrote in the book: “We have to comply with their slow development. We have to be patient. And progresses will be made.” In addition, the book also tells people another story in which a butterfly died because it tried to break the cocoon right away, aiming to warn those parents who force their autistic children step into the world of normal people when they are not ready.
  “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” – Neal’s mother.
  正如Neal的妈妈在其著作《Now I See the Moon》所说“我们必须服从于自然发展的缓慢,有耐心,终将有收获”。《Now I See the Moon》一书中记录了Neal的妈妈培养自闭症患儿Neal的心得。书中通过讲述了一只被人“帮助”强行破茧的蝴蝶最后死掉的故事,来警告那些试图强迫未准备好的自闭症患儿进入正常人世界的家长和教育者们。
  “最知道毛虫何时准备好破茧而出、何时可以作为优雅蝴蝶振翅飞翔的那一个,是毛虫自己。耐心等待,他们终将破茧而出”——转自Neal母亲的心得与自述。
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