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Break the Silence: Ending the isolation of Chinese American families with autism
2015-11-20 20:44    
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简介:
Since 1992, when the CDC started to collect data, autism has been a hot topic all over the country. But in the Asian Community, things are different: autism has long been neglected. How is the day to day life of patients and their families?[查看详细内容]  分享到微信
详细:
什么是自闭症?
What is Autism?
 
(整天关在自己的房间里,搞自己的东西,不想对外是不是?)
(They lock themselves in the room all day, do their own things, do not want go outside, right?)
 
(如果她不喜欢就自己打自己。)
(They hit themselves when they don’t feel good.)
 
(不喜欢讲话,什么都不喜欢。)
(They don’t like to speak, they don’t like to do anything.)
 
(自闭症也可以说是有点胆怯吧?是不是?)
(Autism is same as a little bit shy, isn’t it?)
 
 
 
杨明的妈妈Amy独自带着两个孩子居住在布鲁克林,从小杨明一岁多时,Amy首先发现了他在语言上发育迟缓。
 
Amy Yang lives with her two children in Brooklyn. When her older son, Yang Ming, was a little more than one, Amy realized that he was delayed in his language development.
 
(在中国的时候,他一岁多还不会说话,一个字都不会说,我问了许多老人,我父母,我老公的父母,还有我很多的亲戚,他们都说没事儿,小男孩说话都特别迟。然后等到两岁的时候,他还是没说话,一个字都说不出来。)
(While we were in China, he was unable to talk when he was more than one year old. I asked a lot of seniors, like my parents, parents in law, and many relatives, they all said that it’s all right, boys all start talking very late. Then, we decided to wait for a while. But when he was two years old, he still could not say a word.)
 
Amy带他求医问诊三年多,进行了无数测试,最终在2014年9月才确诊孩子为何不愿意说话。
Amy took Yang Ming to see doctors and experts, and went through numerous tests for over three years. Finally, in September 2014, Amy got confirmation about why Yang Ming didn’t want to speak.
 
(我认识的一个妈妈她给了我一个电话,那个机构叫CARES专门针对华人群体的,他们帮我们安排了一个评估,最后给了我一个诊断是Autism,自闭症。别人告诉你的孩子有自闭症,就好像天塌下来了,就好像快世界末日了,就是真的没办法接受。)
(A mother I knew gave me a number, telling me to contact an organization named CARES. It serves the Chinese families with kids in special need. They helped us arrange an evaluation, and finally Yang Ming was diagnosed with autism. When people tell you that your child has autism, it’s like the sky is falling, like it’s the end of the world. You really can’t accept the fact.)
 
Amy的家人并不理解为什么她要带着孩子去看医生。
Amy's family members do not understand why she always brings the kid to the doctor.
 
(我为这件事哭了很多次,和我丈夫吵了很多次,也和家里人有这样子的冲突,到现在为止我母亲和我父亲都不相信,他的父母也没办法接受。)
(I cried about this many times, and fought with my husband many times, also had conflicts with other family members. Even until now my mother and my father can’t believe this and my parents-in-law also can’t accept it.)
 
The child born in United States vs. the family when they recently came from China, the measure we use might be the same, our interpretation would be different. And we very much rely on parents and our cultural competency to factor into our opinion.
(在美国的家庭和刚从中国来的家庭,我们用的测试标准是同一种,但解释方法可能不一样,我们也非常依赖家长和我们的文化沟通能力进行确诊。)
 
然而耶鲁大学医学院儿童研究中心助理教授Pamela Ventola说,针对亚裔等少数族裔社区自闭症的研究非常缺乏,导致少数族裔的孩子更难获得准确的诊断,而因为经济、文化等原因,缺少案例配合研究,则更加剧了研究不足的现状。
However, Pamela Ventola, Assistant Professor in the Child Study Center of Yale Medical School, said that the lack of the study of autism in Asian and other minority communities leads to difficulty in accurately diagnosing autism in minority children. And because of financial and cultural reasons, fewer minority autism families reach out to the research center and ask for special treatment. This exacerbated the vacancy of the research even more.
 
Minority groups are generally vastly underserved in autism research. People from certain cultural backgrounds are more hesitant to label their child and seek out this kind of specialized help. And that limits our research even further,
(针对少数族裔自闭症的研究严重缺乏,一些文化背景之下,人们不愿意标记他们的孩子为自闭症,不愿意寻求特殊的帮助,这让我们的研究变得更有限。)
 
虽然非常努力的寻求帮助,杨明的妈妈Amy仍然感受到许多来自华人社区的压力,她选择居住在华人较少的区域,不希望杨明在带着有色眼镜的目光下生活。
 
Though Amy doesn’t hesitate to seek help, she still complains about the pressure from the Chinese community. She chose to live in a region with fewer Chinese, and tries to protect Yang Ming from bias and discrimination.
 
(中国人都是说同样的话,你看你儿子活蹦乱跳的,能说能跳的,肯定不是,你放心吧,肯定不是,他们没有办法去很好地面对,也不能很好的接受。)
(Chinese people are saying the same thing to me, look, your son is active, playing and speaking without any problem. Don’t worry too much. I am sure he isn’t autistic. They have problems accepting the situation, let alone working with it.)

对于许多华裔自闭症儿童家长来说,确诊了孩子获患自闭症之后,他们将面对的是一场经济、社会、家庭上的持久战。

To many Chinese families, even after children get diagnosed and parents accept the reality, they still need to face a long-term battle with financial burdens and social pressure.

Jackie和她的女儿居住在布鲁克林的一栋政府楼,除了经年未修的墙体剥落,在曾经是母女俩卧室的墙面上,有一个巨大的洞,这是女儿小洁在自闭症病发时一点一点撞出来的。

Jackie and her daughter live in public housing in Brooklyn. The walls are peeling, not just because of the lack of repairs, but also because Jackie’s autistic daughter, Xiaojie, hit the wall with her head and made the hole bit by bit.

13年前,Jackie和家人通过亲属移民来到美国,一大动力是女儿小洁。小洁在3岁时被诊断为自闭症,医生建议之下,Jackie带着女儿来美国。

13 years ago, Jackie and her family immigrated to the US through the help of their relatives, mainly because of Xiaojie’s autism. Xiaojie was diagnosed at age 3. Doctors back in China recommended that Jackie bring her daughter to the United States for better treatment.

(当时给我的感觉就是,来了这边就不用操心了,把这个女儿交出去,他们就会变出一个好的还给我,来了之后才发现不是那么回事。)

(I thought I wouldn’t need to worry about my daughter anymore after I came here. I just need to hand over my daughter and they would treat her and give a cured one back to me. But when I came here, I soon found out that was not the case.)

当时,梦想着成为服装设计师的Jackie,完全没有想到摆在她面前的路会是怎样的艰辛。

At the time, Jackie was dreaming of becoming a fashion designer. She had no idea about how different her future would be.

(我走在34街看到梅西橱窗里的东西,哇这些这么漂亮是我们那边可以做的,我又在这边发展不知道有多好。)

(I walked on 34th Street and saw the clothes in the window of Macy’s. Wow, so beautiful! We would able to make them back in China. How wonderful if I can develop my career here.)

不久,Jackie就发现根本无法兼顾工作和女儿。

But soon, Jackie found it was impossible to work while taking good care of her daughter.

(很多服务需要你去申请,就像海滩上的贝壳一样,你自己要去捡起来,你要穿成一条链子你自己可以戴,才是最适合我的,所以那时候我就决定放下。)

(There are many services out there, but you need to apply for the proper ones. It was like shells on the beach; you need to thread them by yourself so you could have a necklace suitable to you. That was when I decided to give up my career.)

 没有了经济来源,丈夫的工作也不顺利,Jackie和女儿遭遇到了家庭暴力。

Jackie lost her source of income, and her husband couldn’t find a good job. He started to blame Jackie and Xiaojie and then became violent with them. 

 (来这里半年之后,我就在社工的建议下去了庇护所了。)

(Six months after we immigrated here, social workers suggested that I take my daughter to the emergency shelter.)

两年之内,Jackie和女儿辗转了三个庇护所,直到最后申请到了政府楼居住,而动荡的生活对小洁的病情有巨大的影响。

Within two years, Jackie and her daughter moved among three shelters until they finally got into the government housing they are living in now. The turbulence had a huge impact on Xiaojie.

 (那时候很严重的,就是一放手她就跑到没有的,一放手她就跑到不知到哪里去了,去到人家办公室里面她就马上把所有的花都推倒,她很喜欢做这种很刺激的,自我刺激的举动。)

 (It was really bad at that time. She would run away in a minute if you were not paying attention. When she entered an office, the first thing she would do is to push all the plants down. She liked very exciting, self-stimulating behaviors.)

 (We call them maladapted behaviors. We need to address those behaviors using a variety of strategies. Mostly understanding the environment, understanding that child, and understanding how we can change that environment, change behavior responses to try to encourage that child to increase more positive adapted behavior, and decrease the difficult maladapted behaviors that are really interfering with their education and socialization. )

(我们称此为“不适应行为”,我们需要用多种方式来解决这个问题,主要是理解环境、理解这个孩子,然后用改变环境、改变回应方式等方法,鼓励孩子增加积极的适应的行为,减少不利学习和交流的“不适应行为”。)

 由于不能确定病因,自闭症也没有所谓的“治疗方法”,现有的都是“介入”手段,改善自闭症儿童的状况。

The cause of autism is not determined, thus there is no “cure.” Existing treatment is called “intervention,” which is an effort to improve the situation of autistic children.

全美有许多医疗中心在寻找自闭症的病因和治愈方法。不过,因为语言文化的阻碍,许多华裔患儿家庭无法第一时间从医学杂志上了解研究进展,许多人还是依赖于口口相传。

A number of medical centers and research institutes in the United States are seeking the cause and cure for autism. However, because of the language and cultural barriers, many Chinese families cannot get first-hand or updated information about new research. Many of them still rely on word of mouth.

(They heard from somebody or somebody told them that they took this and then after taking this, things got totally different. What we advise people is, you know, they really should consult their doctors.)

(他们会说,我听说谁说,或者谁告诉我,吃了这个药之后,一切都好了,但我们还是建议,要咨询医生。)

从上世纪70年代,每2000个孩子中一例,到如今每45个孩子中一例,全美自闭症患者数量飞涨,用于自闭症研究和治疗的经费也已经达到了数十亿。然而,华裔自闭症家庭却很难获得这些服务,甚至是帮助华裔自闭症家庭的社区组织也遭遇不少经费问题。

In the 1970s, 1 in 2,000 children had autism. Today, that number has skyrocketed to 1 in 45. The federal government has invested billions of dollars in research and treatment.  However, Chinese families affected by autism find it difficult to obtain these services. And the community organizations that help them have suffered a decline in funding.

10多年前,医生Lean Lax和她华裔的朋友Lisa Louie发现下东城华埠严重缺乏针对特殊儿童的服务,两人一起创办了CARES,服务从出生到三岁有特殊需要的婴幼儿。

About 10 years ago, Doctor Lean Lax and her friend Lisa Louie found a severe lack of services for children with special needs in Chinatown and the Lower East Side. Together they founded CARES to provide services for special-needs infants and babies from birth to three years old.
 

(当孩子三岁以后,家长还是一直带他们来,问我们现在怎么办?我们说,对不起,我们的项目只服务三岁以下,但家长说,可是我们没别的地方去。)

(After the child turned three years old, the parents kept coming back. And they asked, OK, now what? And we said, oh I am so sorry, our program stops at age three. And they said, but there is nowhere for us to go.)
 
两位创始人决定申请执照提供学前班服务,然而他们照看的孩子不停长大,同时,口口相传之下,越来越多的特殊需要儿童家庭来求助。

The two founders decided to apply for a license to provide preschool services. But that was just the beginning. The children they took care of were growing older. At the same time, by word of mouth, more and more families came to their organization seeking help.
 
(And they said, I can't cope, I can't manage the behavior, my child is beating me up, or they are hitting everybody, or they run away. I can't keep them safe. So Lisa and I went to OPWDD many many times. And we went to public hearings, and we testified across the state, in Albany, Buffalo, Rochester, hoping to raise awareness that this is an underserved community, that we need your help to help them.)

(家长们说,我做不了了,控制不了孩子行为,我的孩子会打我,或是打人,逃跑了,我没法保证他们安全。所以我和Lisa去纽约州好多好多次,我们在全州出席公听会,在Albany、Buffalo、Rochester,希望人们注意到这里是服务不足的社区,我们需要你们的帮忙来帮助他们。)
 
如今,CARES有150多名注册医师,服务群体从婴幼儿一直到成年人,范围也从下东城扩大至布鲁克林,但仍无法满足亚裔社区的巨大需求。他们致力推广的应用行为分析法(Applied Behavior Analysis),到自闭症患者家庭、社区等生活环境中,进行治疗和教学,然而这需要更多具有中英双语能力的治疗师。
 
Today, CARES has more than 150 registered physicians, serving groups from infants to adults, and the range has expanded from the Lower East Side to Brooklyn. But it is still unable to meet the huge demand in the Asian community. CARES is committed to promoting ABA (Applied Behavior Analysis) treatment, which treats and teaches autistic children in natural settings, like in their family or community. But this means it needs bilingual therapists.
 
 (I think one of the biggest problems the Asian Community has always faced is access. And that comes from language and cultural barriers.)

(我想亚裔社区长期面临的一大挑战就是渠道,由于文化和语言障碍,难以获得渠道。)
 
2013年,纽约州改变服务政策,要求在服务申请过程中加入“Front Door”讲座面试环节,一下子有数百华裔家庭无法获得服务。

In 2013, the New York State OPWDD changed their policies, introducing the "front door" process, which added screening interviews in the application process to make sure their eligibility. Immediately, hundreds of Chinese autistic families lost access to the services.
 
(我的中国家长就没有办法去参加,因为都是英文讲座。)
 (My Chinese parents have no way to participate, because the lectures are all in English.)
 
除了语言,还有经济压力。
 In addition to the language barrier, there are also financial burdens.

(他们很多都是新移民,都要去工作,工作了一天回来,都没有时间和小孩子一起,没有时间教他们讲话和练习平常的。)
(Many of them are new immigrants. They have to go to work. After a full day at work, they can’t really spend much time with their kids, coaching and practice with them.)
 
经济和时间的压力,缺乏语言文化沟通渠道,令华裔自闭症群体和他们的家庭成为孤岛,而希望能够帮助他们的社区医疗机构和组织,也会遭遇“孤岛效应”--“大部分人甚至不知道有这个岛屿、这个群体的存在”。
 
Financial burdens, in addition to the lack of language and cultural communication channels, isolated these Chinese autistic children and their families from mainstream autistic communities. And due to this “island effect,” community health agencies that are willing to help find it very difficult to secure resources and funding to deliver meaningful help.
 
 (We need the voices of the parents to fight for more services, but to do that, we must know the prevalence of autism in the Chinese community.)

(我们需要家长的声音,来争取更多的服务,但要做到这点,我们必须知道华人社区里的患病率。)
 
 (Early intervention projects have been cut across the state. The most affected areas in New York City were 15-18%. We taxpayers need to go to public officials and demand our rights. These services make such a difference in the life of my child and my family that it’s a worthwhile investment of our tax dollars.)

(纽约州早期干预项目正在削减,纽约市严重的区域削减了15-18%,我们纳税人应该向民选官员争取权益,这些服务对我的孩子和家庭至关重要,应该保留下来。)
 
(在数月的采访收集中,我深切的感受到,对于自闭症患儿家庭来说,医疗只是一部分,减轻经济压力、增加教育机会、开设多语言翻译服务、获得华裔社区的理解和支持,这些都需要众人的力量。)

In the past six months of collecting interviews and materials, I have realized that for Chinese families with autistic children, medical treatment is only one part of the puzzle. The other parts -- easing financial burdens, increasing educational opportunities, creating multi-language translation services, receiving understanding and support within the Chinese community -- require efforts from all of us.

 
Break the Silence: Ending the isolation of Chinese American families with autism
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