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At present， the number of autistics has exceeded 67 million， with an average of one in 150 newborns. And in China， more than 1.6 million people are diagnosed with autism. Children with autism have ears or mouths， but they cannot hear and speak. They seem to live on a faraway planet， only glitter in their own world and bear the loneliness that others are unable to ascertain. Therefore， they are also called “children of the stars”. Beijing Stars Rain Education Institute for Autism is the very institution dedicated to helping these children to glitter on the earth.
目前，全球孤独症患者已超过6700万人，平均每150个新生儿中就会有一个孤独症患者。而在中国，确诊的孤独症患者人数超过160万。患有孤独症的孩子，有耳不能闻，有口不能言，他们仿佛住在遥远的星球上，只在自己的世界里闪烁，承受着旁人无法探知的内心孤独，因此也被称为“星星的孩子”。北京星星雨教育研究所正是致力于帮助这些孩子在地球上闪闪发光的机构。
The plight of families
with autistics
孤独症家庭的困境
Although “children of the stars” sounds like a romantic and poetic name， the stories behind these children are not poetic at all. They are not deaf， but they turn a deaf ear to sounds， not blind， but turn a blind eye to the surroundings， not dumb， but don’t know how to use language to express. Autism is also called infantile autism， autistic disorder and so on. It is a representative disease of pervasive developmental disorder. The primary symptoms of autism are varying degrees of speech development disorder， social communication disorder， narrow interests and rigid behavior. Childhood autism is a subtype of pervasive developmental disorder. It occurs mainly in men and begins in infancy. About three quarters of the patients are accompanied by obvious mental retardation， but some children have better ability in some way. At present the medical profession still cannot conquer the problems of autism treatment.
Until the 1990s， autism is rarely known by people and also very few people can be diagnosed. It is faced up to by people only in recent years， thus the statistics of incidence is increasingly higher. In fact， the increasing incidence is more because of the improvement of the diagnostic methods and the popularization of the public’s relevant awareness. According to the statistics of the United States， the curve of incidence of mental retardation goes just in the opposite direction to that of autism. As can be seen， the abnormal increasing incidence of autism is better explained by the deficiency of related research and diagnostic tools before， so that many autistic children were diagnosed with mental retardation.
“星星的孩子”听上去是一个充满诗意的浪漫名字，然而这些孩子背后的故事却毫无诗意：不聋，却对声音充耳不闻；不盲，却对四周视而不见；不哑，却不知如何用语言表达——孤独症（autism），又称自闭症或孤独性障碍（autistic disorder）等，是广泛性发育障碍（pervasive developmental disorder，PDD）的代表性疾病。主要表现为不同程度的言语发育障碍、人际交往障碍、兴趣狭窄和行为方式刻板。儿童孤独症是广泛性发育障碍的一种亚型，以男性多见，起病于婴幼儿期，约有3/4的患者伴有明显的精神发育迟滞，部分患儿在一般性智力落后的背景下某方面具有较好的能力。目前医学界仍无法攻克孤独症的治疗难题。 孤独症在90年代之前鲜为人知，也很少有人得到诊断，近几年才被人们正视，统计的发病率越来越高。实际上，发病率的增高更多是因为诊断方法的完善和大众相关意识普及。根据美国的数据统计，智力迟缓的发病率曲线与孤独症正好成相反的方向。由此可以看出，孤独症的发病率的异常增多更多是由于以前缺乏相关研究和诊断工具，而使得很多孤独症儿童被诊断为智力迟缓。
According to the data released by the United States Centers for Disease Control and Prevention， in 2014， one in 68 American children has autism， and the proportion of children with autism is about 1.5%. In China， one out of every 166 children has autism. It is conservatively estimated that there are more than one million autistic children in China now， and many potential patients have still not been identified.
In recent years， there is no doubt that the number of autistics in China has surged. In 2012， Sun Yat-Sen University together with Guangzhou Disabled Persons’ Federation took samples from 7500 children， ranging from two to six years old， in 21 public kindergartens in five districts and one county in the city of Guangzhou， and carried out an epidemiological investigation. After scientific and systematic screening and diagnosis， it turns out that the prevalence rate of autism in the average kindergartens in Guangzhou is 1/133， that is to say， there is nearly one autistic in one hundred kindergarten children. By far， it is the highest morbidity domestic investigation ever reported， which is consistent with the related results of developed countries.
For children with autism， some of them may be far more capable in some aspects than average person， such as painting， music， mechanical memory and so on， but most of them are of lower intelligence than average person. As a result， they are confronted with great difficulties in life， learning and employment. Only very few of them turn to the rehabilitation institutions for autism， but most children can only stay at home， accompanied by their parents. However， parents’ protection cannot be eternal， and the autistic children will one day face the problem of the shortage of the custody. When asked about the development of the children in the future， almost every parent reveals helplessness and anxiousness， as the children's future is the parents’ worries that cannot be relieved forever. Under the huge economic and mental pressure， some parents even embark on the extreme road.
2014年，美国疾病控制和预防中心公布的数据显示，每68名美国儿童中有1名孤独症患者，孤独症儿童比例约为1.5%。在中国，每166名儿童中就有一位孤独症儿童。据保守估计，中国现有孤独症儿童超过百万，并且仍有很多潜在患者未被识别。
近年来中国孤独症患者人数激增已是不争的事实。2012年，中山大学联合广州市残联抽取广州市5区1市21所公立幼儿园2到6岁儿童7500人开展了一项流行病学调查，经过科学系统的筛查和诊断后，结果显示广州市普通幼儿园孤独症患病率为1/133，即一百个幼儿园小孩中有将近一个是孤独症患者。这是迄今为止国内调查患病率最高的报道，与发达国家的相关调查结果相一致。 对于孤独症儿童来说，他们中的一些人在某些方面的能力可能远超普通人，如绘画、音乐、机械记忆等，但大多数人智力较常人偏低，生活，学习、就业都面临巨大困难。他们之中只有极少数进入孤独症康复机构，大多数儿童只能在家，由父母陪伴。可家长的庇护不可能是永恒的，这些孤独症儿童终有一天会面临监护缺失的问题。当被问及孩子今后的发展时，几乎每一个家长都流露出了无奈与担忧，孩子的未来是父母们永远解不开的心结。在巨大的经济和精神压力下，甚至有家长走上极端的道路。
In June 2014， a tragedy that a father hacked his autistic son took place in Hong Kong. The 59-year-old man， surnamed Tsai， praised as a “good father” by the neighbors， had fostered his autistic and mentally disabled eldest son for 15 years. As a result of unemployment four months before the crime， Tsai thought himself will step into the sixty years of age and worried about that he and his son will both be a burden on his wife. Therefore， he wrote a suicide note， planning to commit suicide after hacking his eldest son， which claimed that “it is good for this family”. Late on June 27， Tsai murdered his eldest son while he was sleeping soundly， then cut his own throat to attempt suicide， and called the police by himself. However， the autistic son was finally confirmed dead for the severe injury and delayed treatment.
After such a thing happened， what many people do was censure. They accused the father righteously and seriously of his blunder as well as quoted and cited many articles of law to explain. Behind the noble， can anybody understand the sorrow behind the heavy burden， day after day and year after year？ Can anybody understand the great pain and helplessness in the father’s heart in the face of aging and gradually losing the ability to take care of the disordered child？ And how regretful and sad the passing of a young life is？
2014年6月，香港就发生了一起父亲砍死自闭症儿子的惨案。被街坊称赞是“好爸爸”的59岁蔡姓男子，抚育自闭兼智障的长子15载，由于案发前四个月蔡某失业，有感自己将踏入花甲之年，担心自己与儿子俱成妻子负累，遂写下遗书，计划砍死长子后自杀，称“对这个家会好的”。蔡某27日晚趁长子熟睡时行凶，继而刎颈寻死，但其后自行报警，自闭儿子最终伤重不治。
发生了这样的事情，很多人做的是指责，义正言辞地指责这个父亲的错误，翻出若干的法律条文来说明。然而，在这高尚的背后，又有谁能理解那日复一日、年复一年的重负后面的悲哀？又有谁能理解面对自己渐渐老去，逐渐失去照顾障碍孩子的能力，内心的巨大痛楚和无助呢？而一个年轻生命的消逝又是何其令人惋惜和伤心。
The stars and rain of an autistic child’s mother
一位孤独症儿童母亲的星星雨
Tsai in the news is not the only parent who has “extreme” thoughts. 25 years ago， a mother had considered suicide after killing her autistic child， but instead she opened an autism school. The school helps 3，000 children with autism every day despite no government aid. The mother’s name is Tian Huiping.
When after many visits to doctors and hospitals， Tian Huiping’s son was finally diagnosed with autism， the only advice she was given by the doctor was to have one more child in accordance with China’s “one-child” policy. She has considered suicide. “I made a poison for me and my son，” she said. But when she saw her boy smiling up at her happily， she says she couldn’t do it. “I thought， I have no right to end his life， and I cannot kill myself and leave him.”
新闻中的蔡某不是唯一一个萌生“极端”念头的家长。25年前，一位妈妈曾考虑杀掉孤独症孩子后自杀，后来她开办了孤独症学校，尽管没有任何政府资助，该校每天在帮助着3000名患有孤独症的孩子。这位母亲的名字叫做田惠萍。
在经过多次去医院、看大夫之后，田惠萍的儿子最终被诊断为孤独症，医生给他的唯一意见是可以按照中国“独生子女”政策再要一个孩子。
她想到了自杀。“我为自己和儿子弄好了毒药，”但是当她看见儿子抬头幸福地对着她笑时，却无论如何下不了手，“我想，我没有权力结束他的生命，我也不能自杀然后离开他。”
At one of the many hospitals she went to for help， Tian came across a small brochure printed by the Taiwan Autism Association， explaining a few basic concepts on how to teach kids with autism. She read it over and over again. After getting home， she tried to work with her son， and it really worked. “It’s only a little bit， but I saw hope.”
It is such a little faint light that made her generate incredible firm determination -- the unshakeable strength a mother possesses to protect and help her own child. She rented space in a kindergarten and opened her own school at first， with just six autistic children. She slept on the floor in a store room to save money. Two months later， the kindergarten closed down. But the children had shown progress， even though the teaching was based on a few simple concepts in a few pages of a brochure.
Soon， the word was out. And more parents with autistic children came to Tian looking for help， all of them with the same fears. “If my son cannot go to school， what will happen with him？ As a mother this is such a big worry.”
田惠萍去了很多医院寻求帮助，在其中一家她偶然接触到了台湾自闭症基金会印制的小册子，介绍了一些如何教育患有孤独症儿童的基本概念。她把这本小册子读了一遍又一遍。回家后用在自己儿子身上，结果确实奏效了。“只有一点点，但是我看到了希望。”
就是这一点点微弱的光，让她心中产生了令人难以置信的坚定决心——一个母亲要保护和帮助自己孩子的不可动摇的坚强。她从一家幼儿园租了地方，开办了自己的学校，最开始只有6个孤独症儿童。为了节约钱，她就睡在储藏间的地板上。但两个月后，却因为没有盈利而被迫关门。但是孩子们已经表现出了进步，尽管她的教学依据的只是那本只有几页的小册子上的一些简单概念。
很快，这事儿就传了出去。更多的孤独症孩子家长来找田惠平帮助，所有的家长都带着同样的恐惧——“如果我的儿子不能上学，今后他怎么办？作为母亲，这个担心太大了。”
In 1993， Tian Huiping founded the Stars and Rain Education Institute for Autism. It is the first private education institution in China providing services for children with autism and their families. At that time， the field of autistics’ special education was blank in China， and there were just three authoritative doctors nationwide who have diagnosed autism. In the field of education， either school or medical institution， no one institution can provide services and related information to children with autism. Under such circumstances， Tian Huiping and her staff embarked on the difficult journey of exploration. They worked hard to develop an active and effective service mode for children with autism and their families. By constantly seeking relevant information and education methods about autism， Stars and Rain developed a training mode that is in use now -- an educational method theoretically based on applied behavior analysis （ABA） to modify behaviors.
1993年，田惠萍创办了北京星星雨教育研究所。这是中国第一家为孤独症儿童及其家庭提供服务的民办教育机构，当时在中国针对孤独症的特殊教育领域是一片空白，全国仅仅有3名权威医生诊断过孤独症。在教育领域，无论是学校还是医疗机构，都没有一家机构能够给孤独症儿童提供服务以及相关信息。
在这样的情境下，田惠萍和她的员工们开始了艰难的探索之旅。他们努力于开发出一套针对孤独症儿童及其家庭的积极有效的服务模式。通过不断的寻求孤独症的相关信息及其教育方法，“星星雨”开发出了目前正在使用的训练模式，即以应用行为分析法（ABA）为理论基础，通过行为矫正的教育方式。
Because resources are scarce， the focus at Stars and Rain is on teaching the parents how to educate their children. They first help parents to accept their child’s disability and teach basic information about autism awareness. Programs are individualized for each child， with teachers working on verbal communication， managing tantrums and other early intervention methods.
Since 1993， the first group of ABA teachers trained by Stars and Rain has provided services for nearly 6000 children with autism and their families. Stars and Rain has also developed a training mode for parents. Autistics’ parents from all over the country are given courses for two and a half months here， so that they can educate their own child with ABA. Only this mode is feasible in China， because when they turn back to their hometowns， similar services are not available for such families. Therefore， the parents have to take the responsibility to train or educate their children.
因为资源很有限，“星星雨”把重点放在教育家长如何教育自己的孩子。他们首先帮助家长接受自己孩子的这项残疾，并教给他们正确认识孤独症的基本知识。对每个孩子都进行个人化的训练，教师主要进行语言交流、情绪管理以及其他早期干预。
“星星雨”培养出的第一批ABA（行为训练）教师，从1993年以来，已为近6000个孤独症儿童及其家庭提供过服务。“星星雨”还开发出了一套家长训练模式，在这里，来自全国各地的孤独症患儿的家长们要接受2个半月的课程，以便他们能够用ABA教育自己孩子。在中国，只有这种模式是可行的，因为回到自己的家乡后，这样的家庭得不到类似的服务，因此这些家长必须自己承担起训练和教育孩子的责任。
Let the stars flash
the light of hope
让星星雨闪动希望之光
“In China， the antidote of autism is multifarious. Many methods that have been eliminated by foreign countries are abused and even hyped in China. There are little programs to help autistic children and their parents. So far， China doesn’t even have a latest statistics for autism and a lot of efforts are only made by parents with autistic children.” A parent says so on an online forum for Chinese autism. Currently， there are still many shortcomings in social assistance for autistic children in China. The first is insufficient early intervention that would affect the rehabilitation. The public lack adequate awareness of autism and most parts of China have not yet establish the work system for autistic children’s early screening， diagnosis and intervention. 0-to-6-year-old is the best time for autistic children to recover. However， since the parents are lack of relevant professional knowledge or some other reasons， some children have missed the best intervention period so as to affect the effect of later rehabilitation， which makes some high functioning autistic children that could have returned to mainstream society have to endure a lifetime of pain.
Stars and Rain just provides autistic children aged 3 to 6 with individualized education program and preschool training guidance on the basis of applied behavior analysis （ABA）. In the first two weeks of training， the school will observe every autistic student， assess their competency and preliminary set an individualized training program. In the following nine weeks， the parents will learn the techniques of ABA step by step under the guidance of teachers. The techniques of ABA consist of ten units， which will be introduced in stages by the director of Stars and Rain every Friday. At this stage， the parents will have a test at the end of each week. They will train the children in practice in different ways， mainly including： language， cognition， elaboration， exercise， etc. In the last week， every students will be conducted a competency assessment and worked out a family training program. The parents who need continuing help can enter for the feedback classes.
“在中国，孤独症的矫正方法五花八门，很多被国外已经淘汰的方法在中国被滥用甚至大肆宣传。对于孤独症儿童及其家人的帮助还太少了。到目前为止中国连个最新的统计数据都没有。很多努力都是孤独症儿童的家长在做。”在一个中国孤独症网络论坛上，有家长如此发言。
在当前中国，对于孤独症儿童的社会救助仍有许多不足。首当其冲的就是早期干预不足，影响康复效果。公众对孤独症的认识不够，中国大多数地区也尚未建立孤独症儿童早期筛查、诊断、干预的工作体系。0到6岁是孤独症儿童康复的最佳时间，但由于家长缺乏相关的专业知识等原因，导致一些儿童丧失了最佳干预期，影响后期康复效果，让一些原本可以回归到社会主流的高功能孩子，不得不痛苦终生。
“星星雨”正是为3到6岁的孤独症儿童提供以“行为训练”（ABA）个别化教育方案和学前训练指导。培训之初的2个星期，学校对每个孤独症学生进行观察与能力评估，并初步制定一份个别化训练方案。其后的9个星期则是家长在老师们的引导下，有步骤学习ABA技巧的阶段。ABA技巧由10个单元组成，每星期五“星星雨”所长把它分阶段介绍给大家。在这一阶段，每星期结束时会有一次家长考试。在实践中他们会从不同方面训练孩子，主要包括：语言、认知、精细、运动等。最后的1个星期，我们对每个学生进行一次能力测评并帮助制定一份家庭训练计划。对于那些认为需要继续帮助的家长们，他们可以报名参加反馈班。
There are 27 employees in Stars and Rain now， including ten ABA teachers， three maintenance trainers， all of whom have 3 to 19 years of working experience in Stars and Rain educating the autistic children， some majoring in preschool education， some majoring in child psychology and social work. They are given professional training in Stars and Rain by the volunteers from Taiwan， Japan， and the United States， so with the help their knowledge of special education and professional techniques of ABA constantly get mature. As a Non-Governmental Organization （NGO）， Stars and Rain has been in line with the responsibility of providing services with minimum charge standard， instead of taking the tuition fee for working capital. Support of individuals and organizations from China and other countries provides a great help for the services of Stars and Rain. In the 16 years from 1993 to 2008， Stars and Rain received about 7，091，472.52 Yuan funds， took use of the donations to help more than 5，000 families with autistic children from different parts of China and provided them with the service of individualized theory. Since 1998， the school has started to send teachers to outside Beijing to provide long-distance training services for families with autistic children. According to the statistics， there are about 100 institutions for autistic children in China now， most of which are NGOs， and they will send their teachers to Stars and Rain to study its treatment models.
“星星雨”目前有27名员工，其中有10名ABA教师，3名养护训练部老师，他们均有3—19年的在星星雨教育孤独症孩子的经验，他们有的来自幼教专业，也有来自儿童心理和社工专业。在“星星雨”他们受到了来自台湾、日本、美国等志愿者的专业培训，他们的特殊教育知识和ABA专业技巧在这些帮助中不断的成熟起来。
作为一个NGO，学校一直本着以最低收费标准提供服务，而不把学费当作运营资金的责任。来自中国和其他国家的个人和组织的支持为“星星雨”的服务提供了很大的帮助。在1993至2008这16年间，“星星雨”获得了大约7，091，472.52元的资金援助，并利用这笔善款帮助了来自中国不同地区的500多个孤独症儿童的家庭，给他们提供个别化理论服务。从1998年起学校就开始派教师到北京以外地区，为孤独症家庭提供异地培训服务。据统计，现在中国约有100所孤独症儿童学校，其中多数为非政府组织，他们会派老师前往“星星雨”学习其治疗模式。
Stars and Rain is now confronted with two great new challenges： families with autistic children are facing the difficulty of waiting in line for one year， and more and more parents hope that help and services will be provided unceasingly as the children grow up. Therefore， the school begins trying to provide services for children at the age of 7 to 12， at the same time also plans to provide services for teenagers （12-18 years old） on the basis of existing services. What is more， it will establish a nationwide industry network for autistic social services and give professional support to new agencies.
In order to make these autistic children integrate into the society equally and enjoy a normal life， Stars and Rain is striving toward the higher and further goal to make more and more “children of the stars” glitter in our world.
“星星雨”现在面临着两大新挑战：一是孤独症孩子的家庭报名面临着排队等1年的困境；同时越来越多的家长希望随着孩子的长大继续提供帮助与服务。因此学校开始为7至12岁的孩子提供服务，同时也计划在现有服务的基础上为青少年提供服务，将在全国范围内建立孤独症社会服务领域的行业网络，对新成立的机构做专业方面的支持。
为了让这些孤独症孩子机器家庭平等融入社会，为了让孤独症人群享有正常化的生活，“星星雨”正在向着更高更远的目标努力，让越来越多“星星的孩子”在我们的世界中闪闪发光。
目前，全球孤独症患者已超过6700万人，平均每150个新生儿中就会有一个孤独症患者。而在中国，确诊的孤独症患者人数超过160万。患有孤独症的孩子，有耳不能闻，有口不能言，他们仿佛住在遥远的星球上，只在自己的世界里闪烁，承受着旁人无法探知的内心孤独，因此也被称为“星星的孩子”。北京星星雨教育研究所正是致力于帮助这些孩子在地球上闪闪发光的机构。
The plight of families
with autistics
孤独症家庭的困境
Although “children of the stars” sounds like a romantic and poetic name， the stories behind these children are not poetic at all. They are not deaf， but they turn a deaf ear to sounds， not blind， but turn a blind eye to the surroundings， not dumb， but don’t know how to use language to express. Autism is also called infantile autism， autistic disorder and so on. It is a representative disease of pervasive developmental disorder. The primary symptoms of autism are varying degrees of speech development disorder， social communication disorder， narrow interests and rigid behavior. Childhood autism is a subtype of pervasive developmental disorder. It occurs mainly in men and begins in infancy. About three quarters of the patients are accompanied by obvious mental retardation， but some children have better ability in some way. At present the medical profession still cannot conquer the problems of autism treatment.
Until the 1990s， autism is rarely known by people and also very few people can be diagnosed. It is faced up to by people only in recent years， thus the statistics of incidence is increasingly higher. In fact， the increasing incidence is more because of the improvement of the diagnostic methods and the popularization of the public’s relevant awareness. According to the statistics of the United States， the curve of incidence of mental retardation goes just in the opposite direction to that of autism. As can be seen， the abnormal increasing incidence of autism is better explained by the deficiency of related research and diagnostic tools before， so that many autistic children were diagnosed with mental retardation.
“星星的孩子”听上去是一个充满诗意的浪漫名字，然而这些孩子背后的故事却毫无诗意：不聋，却对声音充耳不闻；不盲，却对四周视而不见；不哑，却不知如何用语言表达——孤独症（autism），又称自闭症或孤独性障碍（autistic disorder）等，是广泛性发育障碍（pervasive developmental disorder，PDD）的代表性疾病。主要表现为不同程度的言语发育障碍、人际交往障碍、兴趣狭窄和行为方式刻板。儿童孤独症是广泛性发育障碍的一种亚型，以男性多见，起病于婴幼儿期，约有3/4的患者伴有明显的精神发育迟滞，部分患儿在一般性智力落后的背景下某方面具有较好的能力。目前医学界仍无法攻克孤独症的治疗难题。 孤独症在90年代之前鲜为人知，也很少有人得到诊断，近几年才被人们正视，统计的发病率越来越高。实际上，发病率的增高更多是因为诊断方法的完善和大众相关意识普及。根据美国的数据统计，智力迟缓的发病率曲线与孤独症正好成相反的方向。由此可以看出，孤独症的发病率的异常增多更多是由于以前缺乏相关研究和诊断工具，而使得很多孤独症儿童被诊断为智力迟缓。
According to the data released by the United States Centers for Disease Control and Prevention， in 2014， one in 68 American children has autism， and the proportion of children with autism is about 1.5%. In China， one out of every 166 children has autism. It is conservatively estimated that there are more than one million autistic children in China now， and many potential patients have still not been identified.
In recent years， there is no doubt that the number of autistics in China has surged. In 2012， Sun Yat-Sen University together with Guangzhou Disabled Persons’ Federation took samples from 7500 children， ranging from two to six years old， in 21 public kindergartens in five districts and one county in the city of Guangzhou， and carried out an epidemiological investigation. After scientific and systematic screening and diagnosis， it turns out that the prevalence rate of autism in the average kindergartens in Guangzhou is 1/133， that is to say， there is nearly one autistic in one hundred kindergarten children. By far， it is the highest morbidity domestic investigation ever reported， which is consistent with the related results of developed countries.
For children with autism， some of them may be far more capable in some aspects than average person， such as painting， music， mechanical memory and so on， but most of them are of lower intelligence than average person. As a result， they are confronted with great difficulties in life， learning and employment. Only very few of them turn to the rehabilitation institutions for autism， but most children can only stay at home， accompanied by their parents. However， parents’ protection cannot be eternal， and the autistic children will one day face the problem of the shortage of the custody. When asked about the development of the children in the future， almost every parent reveals helplessness and anxiousness， as the children's future is the parents’ worries that cannot be relieved forever. Under the huge economic and mental pressure， some parents even embark on the extreme road.
2014年，美国疾病控制和预防中心公布的数据显示，每68名美国儿童中有1名孤独症患者，孤独症儿童比例约为1.5%。在中国，每166名儿童中就有一位孤独症儿童。据保守估计，中国现有孤独症儿童超过百万，并且仍有很多潜在患者未被识别。
近年来中国孤独症患者人数激增已是不争的事实。2012年，中山大学联合广州市残联抽取广州市5区1市21所公立幼儿园2到6岁儿童7500人开展了一项流行病学调查，经过科学系统的筛查和诊断后，结果显示广州市普通幼儿园孤独症患病率为1/133，即一百个幼儿园小孩中有将近一个是孤独症患者。这是迄今为止国内调查患病率最高的报道，与发达国家的相关调查结果相一致。 对于孤独症儿童来说，他们中的一些人在某些方面的能力可能远超普通人，如绘画、音乐、机械记忆等，但大多数人智力较常人偏低，生活，学习、就业都面临巨大困难。他们之中只有极少数进入孤独症康复机构，大多数儿童只能在家，由父母陪伴。可家长的庇护不可能是永恒的，这些孤独症儿童终有一天会面临监护缺失的问题。当被问及孩子今后的发展时，几乎每一个家长都流露出了无奈与担忧，孩子的未来是父母们永远解不开的心结。在巨大的经济和精神压力下，甚至有家长走上极端的道路。
In June 2014， a tragedy that a father hacked his autistic son took place in Hong Kong. The 59-year-old man， surnamed Tsai， praised as a “good father” by the neighbors， had fostered his autistic and mentally disabled eldest son for 15 years. As a result of unemployment four months before the crime， Tsai thought himself will step into the sixty years of age and worried about that he and his son will both be a burden on his wife. Therefore， he wrote a suicide note， planning to commit suicide after hacking his eldest son， which claimed that “it is good for this family”. Late on June 27， Tsai murdered his eldest son while he was sleeping soundly， then cut his own throat to attempt suicide， and called the police by himself. However， the autistic son was finally confirmed dead for the severe injury and delayed treatment.
After such a thing happened， what many people do was censure. They accused the father righteously and seriously of his blunder as well as quoted and cited many articles of law to explain. Behind the noble， can anybody understand the sorrow behind the heavy burden， day after day and year after year？ Can anybody understand the great pain and helplessness in the father’s heart in the face of aging and gradually losing the ability to take care of the disordered child？ And how regretful and sad the passing of a young life is？
2014年6月，香港就发生了一起父亲砍死自闭症儿子的惨案。被街坊称赞是“好爸爸”的59岁蔡姓男子，抚育自闭兼智障的长子15载，由于案发前四个月蔡某失业，有感自己将踏入花甲之年，担心自己与儿子俱成妻子负累，遂写下遗书，计划砍死长子后自杀，称“对这个家会好的”。蔡某27日晚趁长子熟睡时行凶，继而刎颈寻死，但其后自行报警，自闭儿子最终伤重不治。
发生了这样的事情，很多人做的是指责，义正言辞地指责这个父亲的错误，翻出若干的法律条文来说明。然而，在这高尚的背后，又有谁能理解那日复一日、年复一年的重负后面的悲哀？又有谁能理解面对自己渐渐老去，逐渐失去照顾障碍孩子的能力，内心的巨大痛楚和无助呢？而一个年轻生命的消逝又是何其令人惋惜和伤心。
The stars and rain of an autistic child’s mother
一位孤独症儿童母亲的星星雨
Tsai in the news is not the only parent who has “extreme” thoughts. 25 years ago， a mother had considered suicide after killing her autistic child， but instead she opened an autism school. The school helps 3，000 children with autism every day despite no government aid. The mother’s name is Tian Huiping.
When after many visits to doctors and hospitals， Tian Huiping’s son was finally diagnosed with autism， the only advice she was given by the doctor was to have one more child in accordance with China’s “one-child” policy. She has considered suicide. “I made a poison for me and my son，” she said. But when she saw her boy smiling up at her happily， she says she couldn’t do it. “I thought， I have no right to end his life， and I cannot kill myself and leave him.”
新闻中的蔡某不是唯一一个萌生“极端”念头的家长。25年前，一位妈妈曾考虑杀掉孤独症孩子后自杀，后来她开办了孤独症学校，尽管没有任何政府资助，该校每天在帮助着3000名患有孤独症的孩子。这位母亲的名字叫做田惠萍。
在经过多次去医院、看大夫之后，田惠萍的儿子最终被诊断为孤独症，医生给他的唯一意见是可以按照中国“独生子女”政策再要一个孩子。
她想到了自杀。“我为自己和儿子弄好了毒药，”但是当她看见儿子抬头幸福地对着她笑时，却无论如何下不了手，“我想，我没有权力结束他的生命，我也不能自杀然后离开他。”
At one of the many hospitals she went to for help， Tian came across a small brochure printed by the Taiwan Autism Association， explaining a few basic concepts on how to teach kids with autism. She read it over and over again. After getting home， she tried to work with her son， and it really worked. “It’s only a little bit， but I saw hope.”
It is such a little faint light that made her generate incredible firm determination -- the unshakeable strength a mother possesses to protect and help her own child. She rented space in a kindergarten and opened her own school at first， with just six autistic children. She slept on the floor in a store room to save money. Two months later， the kindergarten closed down. But the children had shown progress， even though the teaching was based on a few simple concepts in a few pages of a brochure.
Soon， the word was out. And more parents with autistic children came to Tian looking for help， all of them with the same fears. “If my son cannot go to school， what will happen with him？ As a mother this is such a big worry.”
田惠萍去了很多医院寻求帮助，在其中一家她偶然接触到了台湾自闭症基金会印制的小册子，介绍了一些如何教育患有孤独症儿童的基本概念。她把这本小册子读了一遍又一遍。回家后用在自己儿子身上，结果确实奏效了。“只有一点点，但是我看到了希望。”
就是这一点点微弱的光，让她心中产生了令人难以置信的坚定决心——一个母亲要保护和帮助自己孩子的不可动摇的坚强。她从一家幼儿园租了地方，开办了自己的学校，最开始只有6个孤独症儿童。为了节约钱，她就睡在储藏间的地板上。但两个月后，却因为没有盈利而被迫关门。但是孩子们已经表现出了进步，尽管她的教学依据的只是那本只有几页的小册子上的一些简单概念。
很快，这事儿就传了出去。更多的孤独症孩子家长来找田惠平帮助，所有的家长都带着同样的恐惧——“如果我的儿子不能上学，今后他怎么办？作为母亲，这个担心太大了。”
In 1993， Tian Huiping founded the Stars and Rain Education Institute for Autism. It is the first private education institution in China providing services for children with autism and their families. At that time， the field of autistics’ special education was blank in China， and there were just three authoritative doctors nationwide who have diagnosed autism. In the field of education， either school or medical institution， no one institution can provide services and related information to children with autism. Under such circumstances， Tian Huiping and her staff embarked on the difficult journey of exploration. They worked hard to develop an active and effective service mode for children with autism and their families. By constantly seeking relevant information and education methods about autism， Stars and Rain developed a training mode that is in use now -- an educational method theoretically based on applied behavior analysis （ABA） to modify behaviors.
1993年，田惠萍创办了北京星星雨教育研究所。这是中国第一家为孤独症儿童及其家庭提供服务的民办教育机构，当时在中国针对孤独症的特殊教育领域是一片空白，全国仅仅有3名权威医生诊断过孤独症。在教育领域，无论是学校还是医疗机构，都没有一家机构能够给孤独症儿童提供服务以及相关信息。
在这样的情境下，田惠萍和她的员工们开始了艰难的探索之旅。他们努力于开发出一套针对孤独症儿童及其家庭的积极有效的服务模式。通过不断的寻求孤独症的相关信息及其教育方法，“星星雨”开发出了目前正在使用的训练模式，即以应用行为分析法（ABA）为理论基础，通过行为矫正的教育方式。
Because resources are scarce， the focus at Stars and Rain is on teaching the parents how to educate their children. They first help parents to accept their child’s disability and teach basic information about autism awareness. Programs are individualized for each child， with teachers working on verbal communication， managing tantrums and other early intervention methods.
Since 1993， the first group of ABA teachers trained by Stars and Rain has provided services for nearly 6000 children with autism and their families. Stars and Rain has also developed a training mode for parents. Autistics’ parents from all over the country are given courses for two and a half months here， so that they can educate their own child with ABA. Only this mode is feasible in China， because when they turn back to their hometowns， similar services are not available for such families. Therefore， the parents have to take the responsibility to train or educate their children.
因为资源很有限，“星星雨”把重点放在教育家长如何教育自己的孩子。他们首先帮助家长接受自己孩子的这项残疾，并教给他们正确认识孤独症的基本知识。对每个孩子都进行个人化的训练，教师主要进行语言交流、情绪管理以及其他早期干预。
“星星雨”培养出的第一批ABA（行为训练）教师，从1993年以来，已为近6000个孤独症儿童及其家庭提供过服务。“星星雨”还开发出了一套家长训练模式，在这里，来自全国各地的孤独症患儿的家长们要接受2个半月的课程，以便他们能够用ABA教育自己孩子。在中国，只有这种模式是可行的，因为回到自己的家乡后，这样的家庭得不到类似的服务，因此这些家长必须自己承担起训练和教育孩子的责任。
Let the stars flash
the light of hope
让星星雨闪动希望之光
“In China， the antidote of autism is multifarious. Many methods that have been eliminated by foreign countries are abused and even hyped in China. There are little programs to help autistic children and their parents. So far， China doesn’t even have a latest statistics for autism and a lot of efforts are only made by parents with autistic children.” A parent says so on an online forum for Chinese autism. Currently， there are still many shortcomings in social assistance for autistic children in China. The first is insufficient early intervention that would affect the rehabilitation. The public lack adequate awareness of autism and most parts of China have not yet establish the work system for autistic children’s early screening， diagnosis and intervention. 0-to-6-year-old is the best time for autistic children to recover. However， since the parents are lack of relevant professional knowledge or some other reasons， some children have missed the best intervention period so as to affect the effect of later rehabilitation， which makes some high functioning autistic children that could have returned to mainstream society have to endure a lifetime of pain.
Stars and Rain just provides autistic children aged 3 to 6 with individualized education program and preschool training guidance on the basis of applied behavior analysis （ABA）. In the first two weeks of training， the school will observe every autistic student， assess their competency and preliminary set an individualized training program. In the following nine weeks， the parents will learn the techniques of ABA step by step under the guidance of teachers. The techniques of ABA consist of ten units， which will be introduced in stages by the director of Stars and Rain every Friday. At this stage， the parents will have a test at the end of each week. They will train the children in practice in different ways， mainly including： language， cognition， elaboration， exercise， etc. In the last week， every students will be conducted a competency assessment and worked out a family training program. The parents who need continuing help can enter for the feedback classes.
“在中国，孤独症的矫正方法五花八门，很多被国外已经淘汰的方法在中国被滥用甚至大肆宣传。对于孤独症儿童及其家人的帮助还太少了。到目前为止中国连个最新的统计数据都没有。很多努力都是孤独症儿童的家长在做。”在一个中国孤独症网络论坛上，有家长如此发言。
在当前中国，对于孤独症儿童的社会救助仍有许多不足。首当其冲的就是早期干预不足，影响康复效果。公众对孤独症的认识不够，中国大多数地区也尚未建立孤独症儿童早期筛查、诊断、干预的工作体系。0到6岁是孤独症儿童康复的最佳时间，但由于家长缺乏相关的专业知识等原因，导致一些儿童丧失了最佳干预期，影响后期康复效果，让一些原本可以回归到社会主流的高功能孩子，不得不痛苦终生。
“星星雨”正是为3到6岁的孤独症儿童提供以“行为训练”（ABA）个别化教育方案和学前训练指导。培训之初的2个星期，学校对每个孤独症学生进行观察与能力评估，并初步制定一份个别化训练方案。其后的9个星期则是家长在老师们的引导下，有步骤学习ABA技巧的阶段。ABA技巧由10个单元组成，每星期五“星星雨”所长把它分阶段介绍给大家。在这一阶段，每星期结束时会有一次家长考试。在实践中他们会从不同方面训练孩子，主要包括：语言、认知、精细、运动等。最后的1个星期，我们对每个学生进行一次能力测评并帮助制定一份家庭训练计划。对于那些认为需要继续帮助的家长们，他们可以报名参加反馈班。
There are 27 employees in Stars and Rain now， including ten ABA teachers， three maintenance trainers， all of whom have 3 to 19 years of working experience in Stars and Rain educating the autistic children， some majoring in preschool education， some majoring in child psychology and social work. They are given professional training in Stars and Rain by the volunteers from Taiwan， Japan， and the United States， so with the help their knowledge of special education and professional techniques of ABA constantly get mature. As a Non-Governmental Organization （NGO）， Stars and Rain has been in line with the responsibility of providing services with minimum charge standard， instead of taking the tuition fee for working capital. Support of individuals and organizations from China and other countries provides a great help for the services of Stars and Rain. In the 16 years from 1993 to 2008， Stars and Rain received about 7，091，472.52 Yuan funds， took use of the donations to help more than 5，000 families with autistic children from different parts of China and provided them with the service of individualized theory. Since 1998， the school has started to send teachers to outside Beijing to provide long-distance training services for families with autistic children. According to the statistics， there are about 100 institutions for autistic children in China now， most of which are NGOs， and they will send their teachers to Stars and Rain to study its treatment models.
“星星雨”目前有27名员工，其中有10名ABA教师，3名养护训练部老师，他们均有3—19年的在星星雨教育孤独症孩子的经验，他们有的来自幼教专业，也有来自儿童心理和社工专业。在“星星雨”他们受到了来自台湾、日本、美国等志愿者的专业培训，他们的特殊教育知识和ABA专业技巧在这些帮助中不断的成熟起来。
作为一个NGO，学校一直本着以最低收费标准提供服务，而不把学费当作运营资金的责任。来自中国和其他国家的个人和组织的支持为“星星雨”的服务提供了很大的帮助。在1993至2008这16年间，“星星雨”获得了大约7，091，472.52元的资金援助，并利用这笔善款帮助了来自中国不同地区的500多个孤独症儿童的家庭，给他们提供个别化理论服务。从1998年起学校就开始派教师到北京以外地区，为孤独症家庭提供异地培训服务。据统计，现在中国约有100所孤独症儿童学校，其中多数为非政府组织，他们会派老师前往“星星雨”学习其治疗模式。
Stars and Rain is now confronted with two great new challenges： families with autistic children are facing the difficulty of waiting in line for one year， and more and more parents hope that help and services will be provided unceasingly as the children grow up. Therefore， the school begins trying to provide services for children at the age of 7 to 12， at the same time also plans to provide services for teenagers （12-18 years old） on the basis of existing services. What is more， it will establish a nationwide industry network for autistic social services and give professional support to new agencies.
In order to make these autistic children integrate into the society equally and enjoy a normal life， Stars and Rain is striving toward the higher and further goal to make more and more “children of the stars” glitter in our world.
“星星雨”现在面临着两大新挑战：一是孤独症孩子的家庭报名面临着排队等1年的困境；同时越来越多的家长希望随着孩子的长大继续提供帮助与服务。因此学校开始为7至12岁的孩子提供服务，同时也计划在现有服务的基础上为青少年提供服务，将在全国范围内建立孤独症社会服务领域的行业网络，对新成立的机构做专业方面的支持。
为了让这些孤独症孩子机器家庭平等融入社会，为了让孤独症人群享有正常化的生活，“星星雨”正在向着更高更远的目标努力，让越来越多“星星的孩子”在我们的世界中闪闪发光。