讓來自星星的孩子閃閃發(fā)光

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，全球孤獨癥患者已超過6700萬人，平均每150個新生兒中就會有一個孤獨癥患者。而在中國，確診的孤獨癥患者人數(shù)超過160萬?；加泄陋毎Y的孩子，有耳不能聞，有口不能言，他們仿佛住在遙遠的星球上，只在自己的世界里閃爍，承受著旁人無法探知的內(nèi)心孤獨，因此也被稱為“星星的孩子”。北京星星雨教育研究所正是致力于幫助這些孩子在地球上閃閃發(fā)光的機構。

The plight of families

with autistics

孤獨癥家庭的困境

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”聽上去是一個充滿詩意的浪漫名字，然而這些孩子背后的故事卻毫無詩意：不聾，卻對聲音充耳不聞；不盲，卻對四周視而不見；不啞，卻不知如何用語言表達——孤獨癥（autism），又稱自閉癥或孤獨性障礙（autistic disorder）等，是廣泛性發(fā)育障礙（pervasive developmental disorder，PDD）的代表性疾病。主要表現(xiàn)為不同程度的言語發(fā)育障礙、人際交往障礙、興趣狹窄和行為方式刻板。兒童孤獨癥是廣泛性發(fā)育障礙的一種亞型，以男性多見，起病于嬰幼兒期，約有3/4的患者伴有明顯的精神發(fā)育遲滯，部分患兒在一般性智力落后的背景下某方面具有較好的能力。目前醫(yī)學界仍無法攻克孤獨癥的治療難題。

孤獨癥在90年代之前鮮為人知，也很少有人得到診斷，近幾年才被人們正視，統(tǒng)計的發(fā)病率越來越高。實際上，發(fā)病率的增高更多是因為診斷方法的完善和大眾相關意識普及。根據(jù)美國的數(shù)據(jù)統(tǒng)計，智力遲緩的發(fā)病率曲線與孤獨癥正好成相反的方向。由此可以看出，孤獨癥的發(fā)病率的異常增多更多是由于以前缺乏相關研究和診斷工具，而使得很多孤獨癥兒童被診斷為智力遲緩。

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，美國疾病控制和預防中心公布的數(shù)據(jù)顯示，每68名美國兒童中有1名孤獨癥患者，孤獨癥兒童比例約為1.5%。在中國，每166名兒童中就有一位孤獨癥兒童。據(jù)保守估計，中國現(xiàn)有孤獨癥兒童超過百萬，并且仍有很多潛在患者未被識別。

近年來中國孤獨癥患者人數(shù)激增已是不爭的事實。2012年，中山大學聯(lián)合廣州市殘聯(lián)抽取廣州市5區(qū)1市21所公立幼兒園2到6歲兒童7500人開展了一項流行病學調查，經(jīng)過科學系統(tǒng)的篩查和診斷后，結果顯示廣州市普通幼兒園孤獨癥患病率為1/133，即一百個幼兒園小孩中有將近一個是孤獨癥患者。這是迄今為止國內(nèi)調查患病率最高的報道，與發(fā)達國家的相關調查結果相一致。

對于孤獨癥兒童來說，他們中的一些人在某些方面的能力可能遠超普通人，如繪畫、音樂、機械記憶等，但大多數(shù)人智力較常人偏低，生活，學習、就業(yè)都面臨巨大困難。他們之中只有極少數(shù)進入孤獨癥康復機構，大多數(shù)兒童只能在家，由父母陪伴。可家長的庇護不可能是永恒的，這些孤獨癥兒童終有一天會面臨監(jiān)護缺失的問題。當被問及孩子今后的發(fā)展時，幾乎每一個家長都流露出了無奈與擔憂，孩子的未來是父母們永遠解不開的心結。在巨大的經(jīng)濟和精神壓力下，甚至有家長走上極端的道路。

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，香港就發(fā)生了一起父親砍死自閉癥兒子的慘案。被街坊稱贊是“好爸爸”的59歲蔡姓男子，撫育自閉兼智障的長子15載，由于案發(fā)前四個月蔡某失業(yè)，有感自己將踏入花甲之年，擔心自己與兒子俱成妻子負累，遂寫下遺書，計劃砍死長子后自殺，稱“對這個家會好的”。蔡某27日晚趁長子熟睡時行兇，繼而刎頸尋死，但其后自行報警，自閉兒子最終傷重不治。

發(fā)生了這樣的事情，很多人做的是指責，義正言辭地指責這個父親的錯誤，翻出若干的法律條文來說明。然而，在這高尚的背后，又有誰能理解那日復一日、年復一年的重負后面的悲哀？又有誰能理解面對自己漸漸老去，逐漸失去照顧障礙孩子的能力，內(nèi)心的巨大痛楚和無助呢？而一個年輕生命的消逝又是何其令人惋惜和傷心。

The stars and rain of an autistic child’s mother

一位孤獨癥兒童母親的星星雨

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.”

新聞中的蔡某不是唯一一個萌生“極端”念頭的家長。25年前，一位媽媽曾考慮殺掉孤獨癥孩子后自殺，后來她開辦了孤獨癥學校，盡管沒有任何政府資助，該校每天在幫助著3000名患有孤獨癥的孩子。這位母親的名字叫做田惠萍。

在經(jīng)過多次去醫(yī)院、看大夫之后，田惠萍的兒子最終被診斷為孤獨癥，醫(yī)生給他的唯一意見是可以按照中國“獨生子女”政策再要一個孩子。

她想到了自殺?！拔覟樽约汉蛢鹤优昧硕舅?，”但是當她看見兒子抬頭幸福地對著她笑時，卻無論如何下不了手，“我想，我沒有權力結束他的生命，我也不能自殺然后離開他。”

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.”

田惠萍去了很多醫(yī)院尋求幫助，在其中一家她偶然接觸到了臺灣自閉癥基金會印制的小冊子，介紹了一些如何教育患有孤獨癥兒童的基本概念。她把這本小冊子讀了一遍又一遍?；丶液笥迷谧约簝鹤由砩?，結果確實奏效了?！爸挥幸稽c點，但是我看到了希望?！?/p>

就是這一點點微弱的光，讓她心中產(chǎn)生了令人難以置信的堅定決心——一個母親要保護和幫助自己孩子的不可動搖的堅強。她從一家幼兒園租了地方，開辦了自己的學校，最開始只有6個孤獨癥兒童。為了節(jié)約錢，她就睡在儲藏間的地板上。但兩個月后，卻因為沒有盈利而被迫關門。但是孩子們已經(jīng)表現(xiàn)出了進步，盡管她的教學依據(jù)的只是那本只有幾頁的小冊子上的一些簡單概念。

很快，這事兒就傳了出去。更多的孤獨癥孩子家長來找田惠平幫助，所有的家長都帶著同樣的恐懼——“如果我的兒子不能上學，今后他怎么辦？作為母親，這個擔心太大了?！?/p>

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，田惠萍創(chuàng)辦了北京星星雨教育研究所。這是中國第一家為孤獨癥兒童及其家庭提供服務的民辦教育機構，當時在中國針對孤獨癥的特殊教育領域是一片空白，全國僅僅有3名權威醫(yī)生診斷過孤獨癥。在教育領域，無論是學校還是醫(yī)療機構，都沒有一家機構能夠給孤獨癥兒童提供服務以及相關信息。

在這樣的情境下，田惠萍和她的員工們開始了艱難的探索之旅。他們努力于開發(fā)出一套針對孤獨癥兒童及其家庭的積極有效的服務模式。通過不斷的尋求孤獨癥的相關信息及其教育方法，“星星雨”開發(fā)出了目前正在使用的訓練模式，即以應用行為分析法（ABA）為理論基礎，通過行為矯正的教育方式。

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.

因為資源很有限，“星星雨”把重點放在教育家長如何教育自己的孩子。他們首先幫助家長接受自己孩子的這項殘疾，并教給他們正確認識孤獨癥的基本知識。對每個孩子都進行個人化的訓練，教師主要進行語言交流、情緒管理以及其他早期干預。

“星星雨”培養(yǎng)出的第一批ABA（行為訓練）教師，從1993年以來，已為近6000個孤獨癥兒童及其家庭提供過服務。“星星雨”還開發(fā)出了一套家長訓練模式，在這里，來自全國各地的孤獨癥患兒的家長們要接受2個半月的課程，以便他們能夠用ABA教育自己孩子。在中國，只有這種模式是可行的，因為回到自己的家鄉(xiāng)后，這樣的家庭得不到類似的服務，因此這些家長必須自己承擔起訓練和教育孩子的責任。

Let the stars flash

the light of hope

讓星星雨閃動希望之光

“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.

“在中國，孤獨癥的矯正方法五花八門，很多被國外已經(jīng)淘汰的方法在中國被濫用甚至大肆宣傳。對于孤獨癥兒童及其家人的幫助還太少了。到目前為止中國連個最新的統(tǒng)計數(shù)據(jù)都沒有。很多努力都是孤獨癥兒童的家長在做?！痹谝粋€中國孤獨癥網(wǎng)絡論壇上，有家長如此發(fā)言。

在當前中國，對于孤獨癥兒童的社會救助仍有許多不足。首當其沖的就是早期干預不足，影響康復效果。公眾對孤獨癥的認識不夠，中國大多數(shù)地區(qū)也尚未建立孤獨癥兒童早期篩查、診斷、干預的工作體系。0到6歲是孤獨癥兒童康復的最佳時間，但由于家長缺乏相關的專業(yè)知識等原因，導致一些兒童喪失了最佳干預期，影響后期康復效果，讓一些原本可以回歸到社會主流的高功能孩子，不得不痛苦終生。

“星星雨”正是為3到6歲的孤獨癥兒童提供以“行為訓練”（ABA）個別化教育方案和學前訓練指導。培訓之初的2個星期，學校對每個孤獨癥學生進行觀察與能力評估，并初步制定一份個別化訓練方案。其后的9個星期則是家長在老師們的引導下，有步驟學習ABA技巧的階段。ABA技巧由10個單元組成，每星期五“星星雨”所長把它分階段介紹給大家。在這一階段，每星期結束時會有一次家長考試。在實踐中他們會從不同方面訓練孩子，主要包括：語言、認知、精細、運動等。最后的1個星期，我們對每個學生進行一次能力測評并幫助制定一份家庭訓練計劃。對于那些認為需要繼續(xù)幫助的家長們，他們可以報名參加反饋班。

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名員工，其中有10名ABA教師，3名養(yǎng)護訓練部老師，他們均有3—19年的在星星雨教育孤獨癥孩子的經(jīng)驗，他們有的來自幼教專業(yè)，也有來自兒童心理和社工專業(yè)。在“星星雨”他們受到了來自臺灣、日本、美國等志愿者的專業(yè)培訓，他們的特殊教育知識和ABA專業(yè)技巧在這些幫助中不斷的成熟起來。

作為一個NGO，學校一直本著以最低收費標準提供服務，而不把學費當作運營資金的責任。來自中國和其他國家的個人和組織的支持為“星星雨”的服務提供了很大的幫助。在1993至2008這16年間，“星星雨”獲得了大約7，091，472.52元的資金援助，并利用這筆善款幫助了來自中國不同地區(qū)的500多個孤獨癥兒童的家庭，給他們提供個別化理論服務。從1998年起學校就開始派教師到北京以外地區(qū)，為孤獨癥家庭提供異地培訓服務。據(jù)統(tǒng)計，現(xiàn)在中國約有100所孤獨癥兒童學校，其中多數(shù)為非政府組織，他們會派老師前往“星星雨”學習其治療模式。

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”現(xiàn)在面臨著兩大新挑戰(zhàn)：一是孤獨癥孩子的家庭報名面臨著排隊等1年的困境；同時越來越多的家長希望隨著孩子的長大繼續(xù)提供幫助與服務。因此學校開始為7至12歲的孩子提供服務，同時也計劃在現(xiàn)有服務的基礎上為青少年提供服務，將在全國范圍內(nèi)建立孤獨癥社會服務領域的行業(yè)網(wǎng)絡，對新成立的機構做專業(yè)方面的支持。

為了讓這些孤獨癥孩子機器家庭平等融入社會，為了讓孤獨癥人群享有正?；纳睿靶切怯辍闭谙蛑吒h的目標努力，讓越來越多“星星的孩子”在我們的世界中閃閃發(fā)光。