The Struggle Against Autism in China

中文 English

Editor’s Note:

This article was originally written in Chinese by CDB editor Zhang Huan, who is herself the mother of a child diagnosed with an autism spectrum disorder. The article focuses on the ALSOlife website, a platform for the families of children with autism in China.

 

According to a 2016 report by the United States’ National Center for Health Statistics, one out of forty five American children aged three to seventeen (or 2.2%) have autism. In China ten million people, or roughly 1% of the country’s total population, suffer from autism. Out of these two million are children, a number which continues to grow at a rate of two hundred thousand people per year.

When compared with a total population of 1.3 billion, ten million may not seem significant. But if we consider this figure in the context of our daily lives, a 1% prevalence suggests that in every mid-sized kindergarten there is at least one child with autism. And for every child who is diagnosed with autism, a family confronts the immense psychological and financial burden that accompanies adjusting to and treating their child’s condition. For these families, the trajectory of their lives has been irrevocably altered.

 

Evaluation and Individualized Training are the Keys to Rehabilitation

Recognizing and diagnosing autism and rehabilitating and integrating the individual are the four essential steps in the rehabilitation of all children with autism. The only difference is that some children linger in one of these stages for longer or shorter periods than others. Some parents discover their child’s condition and implement timely interventions when their child is only a few years old; other children have their condition identified by a kindergarten teacher who notices differences in how a child expresses themselves compared with their peers; others are misdiagnosed by local doctors who don’t understand autism and confuse it with epilepsy or cerebral palsy, thus forcing the child and their parents to spend even more time searching for a proper diagnosis.

Yet even when a child is properly diagnosed, parents can still find themselves tripped up during their child’s period of recovery. A hodgepodge of autism recovery organizations, countless recovery methods and various self-help online chat groups: parents are bombarded with information, leaving them utterly baffled. Terms like “cure” or “recovery” are clutched at like straws. Parents try everything, comforting themselves by saying “it might just work”, “why not give it a shot, there was that family’s child who improved after taking that medicine” and “if I don’t try it now, I’ll regret it later”. In the face of an as-yet-incurable condition like autism, parents are willing to do anything they can.

America’s National Autism Center’s 2015 National Standards Project presents the updated treatment literature directed at individuals on the autism-spectrum aged up to twenty-two. There are fourteen well-established and recognized intervention methods aimed at children and youths: behavioral intervention; cognitive behavioral intervention; comprehensive behavioral treatment for young children; language training; modelling; naturalistic training methods; parent training; peer training; pivotal response training; scheduling; scripting; self-management; social skills training; and story-based intervention.

According to Jie Hui, a PhD candidate at the University of Oregon’s Department of Special Education, all of the most effective interventions have one characteristic in common: they are individualized. One-size-fits-all interventions directed at children with autism won’t achieve any meaningful results if they aren’t tailored to the particular needs of the individual child. If one wants to engage in day-to-day intervention, the first step is to correctly understand a child’s abilities. This is the importance of evaluation. Working out a child’s education plan and the content of their training requires an individual education program (IEP). This is the importance of an IEP. Evaluation and an IEP go hand-in-hand; both are indispensable.

Under present conditions, only children who are able to access good rehabilitation institutions can be properly evaluated and receive an IEP training plan. But even after parents have sent their children to these schools far from home and spent significant amounts of money on monthly school fees, only a small fraction of these children will be fortunate enough to gain admittance to an exceptional institution and commence their intervention training. Most children will end lining up outside these institutions without ever receiving an evaluation report or an IEP, leaving their parents unsure of what to do and worried that their child’s time has been wasted.

A survey by ALSOlife shows the average monthly expenditure on private tuition and intervention for families with autism: nearly 23% of families spend 6,000-10,000RMB, 18% of families spend between 10,000 and 20,000RMB and 2% of the survey participants spend even more than 20,000RMB, meaning that nearly 43% of the families have yearly expenditures in this area that exceed 72,000RMB. To draw a comparison, if we look at the national disposable income for families in 2016, Shanghai had the highest at 115,000 RMB, and the second highest was Beijing with 113,000 RMB; even with regard to families in these two cities, yearly expenses for autism intervention exceed 50% of average disposable income. For other cities, the percentage is even higher.

The exorbitant costs mean that many families have no choice but to leave the centres after three or six months. An even more serious issue is that more than 90% of centres do not accept children over the age of six; these children will eventually return to home schooling.

 

A platform to carry out online assessments with customised daily rehabilitation plans, free for parents to use 

As early as 1993, China’s first specialised autism rehabilitation centre, Star Rain, was established by Tian HuiPing, the parent of an autistic child. Star Rain’s guiding principle is “just train the parents, and let the parents train the children”. At present, the waiting time to take part in the 11-week professional ABA study course is two years.

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Star Rain is China’s first autism rehabilitation centre

 

Due to the fact that autism requires lifelong intervention, parents have become experts at combining rehabilitation methods with their daily lives. Tian Huiping is very much in favour of parents teaching in their daily life: “Our rehabilitation goal is to improve the quality of life for children and for parents.”

In Beijing’s circles of parents of autistic children, the “legend of the Three Musketeers” has acquired a certain renown. The “Three Musketeers” in question are three respected parents of children with autism – Papa Qiu, Papa Li and Daddy Bubble. One thing they have in common is that their children all have moderate to severe autism; Papa Qiu and Papa Li each have a set of twins, one son and one daughter. Another common factor is that because of their children’s condition, they are all systematically studying autism rehabilitation methods and using all their new knowledge and understanding to help new parents.

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Papa Qiu and Mama Qiu on the CCTV programme “Readers”

 

On the 15th of February 2017, through the great efforts of the “Three Musketeers”, a site called ‘ALSOlife’ took to the skies. Calling itself an “Assessment and Intervention Platform for China’s Autistic Families”, the website is based on the ALSO theory of autism specialist Doctor Guo Yanqing. It provides six dimensions of assessment and intervention plans and offers free support and help to all families with autism.

Daddy Bubble (Zhang Zhiguang) spoke to China Development Brief about the original intention behind building the website: “In June 2015, after my son was diagnosed, I was the same as all new parents, I started studying autism like crazy, and after reading 50 or 60 books I had a firm understanding of the condition. Looking around me, I saw that everyone was trying hard to worm their way into the centres, but afterwards, after getting in, what then? At present in China those who have been diagnosed with autism are only around 30 years old at most. When they are old, when our children are grown up, we need to think seriously about who will take ownership later on.”

By a stroke of luck, Daddy Bubble met Doctor Guo Yanqing. He realized that the ALSO theory that Professor Guo was putting forward best corresponded with their objectives: to be based in the present (at two/three years of age), to take a broad view into the future (considering the needs of the children when they grow to be 20 or 30 years of age, or even into later stages of life) and to build a bridge between the present and the future. Through this method, the transformation and improvement of the key abilities of autistic children might be realized, from self-care, to self-reliance, to independence.

Concretely, if the ALSO intervention theory is put into practice in daily life, especially in the fields referred to as A (cognition and study), L (survival and life) and S (society and social intercourse), then O (career) generally has a good chance of being realized too.

On the afternoon of February 15, the ALSOlife website launched a capabilities survey of autistic children under the age of four. All participants required an invitation code to complete the online survey. Within a single day, three parent groups had been created on Wechat by word of mouth, with 500 members each. Dr. Guo Yanqing, Papa Qiu, Papa Liu and Daddy Bubble were all quickly inspired by discovering fellow parents through these groups. With continual development over the course of eight months, ALSOlife created 18 WeChat groups, each with 500 members, along with three outside learning groups, for a total of more than ten thousand users.

“We give parents simple assessment tools to get started with. Previously, they had to use an overseas assessment system that required authorization each time with pricey fees, and was operated by specialized trainers that further increased costs. Our current tools and algorithms can quickly assess children and, once assessed, our system can create a daily training program customized to the needs of each child. Parents only have to follow this customized schedule to complete the necessary daily interventions. Furthermore, this program can help autistic children prepare for their future work life,” said Daddy Bubble.

In order to fulfill these goals, the ALSOlife team carried out three months of intensive organizing, screening and analysis of various industries, professions and occupations within China to create a systematized and comprehensive database of occupations.

Below is a chart of the health and social work industry (in Chinese):

微信图片_20171019151440

 

In the next chart the information is further divided, individually analyzing the required abilities for each job. Also, looking at the data for currently obtainable employment, a list of the most compatible positions for autistic children was compiled:

Screen Shot 2017-12-07 at 4.13.25 PM

Through one further division, all the levels of ability requirements for each job are differentiated and given individual rankings to create training points that can be viewed online. Finally, each of the children on the platform were automatically sent their corresponding occupational skills scores.

Taking the profession of florist as an example, abilities can be segmented from high-level skills (ex. identifying different kinds of flowers, bundling according to orders etc.) to low level cognitive, linguistic and self-care capabilities (ex. distinguishing frequently seen plants, understanding numbers, returning used objects).

This demonstrates that the training content of the ALSOlife platform is not pulled out of thin air but is organized according to a thorough dissection of the specific skills and job compatibilities of each child. The ALSOlife platform has two other databases similar to the Occupational Skills database; the Independent Living database and the Living Environment database. Taken together, they form the basis for the platform’s training content.

 

Training today for life tomorrow

Regarding autism rehabilitation, Daddy Bubble thinks that “there are many problems”: “Currently, autism has developed into a prevalent trend and everyone has been focusing on early age rehabilitation centers, believing it is easier to raise money for autism rehabilitation than early education. Few people pay attention to the job suitability and placement of adult autistic patients. Our idea is to let the money and services available for the rehabilitation of young autistic children serve the future. Our children are still young, with parents who can still afford rehabilitation expenses, but once we are old and lack financial resources who will support our children?”

 

When we are gone, what path will our children follow?

Many households with an autistic child choose a second pregnancy, hoping to create a home with very close siblings. However, there is a 20% chance that the second child will also have autism, so this can be seen as even more of a gamble with fate. Following the popularization of the concept of trust funds, more and more parents have focused their hopes for the future on financial trusts. More still have become “action groups”, uniting together to investigate mountainous regions in search of a sanctuary for autistic patients, modelled on the example of autism care at places like Elm Village in Japan. For example the Beijing Conna Autism Family Support Center is currently running a trial site on Dabie Mountain in Jinzhai, which has caught the attention of many families with autistic adults.

Parents are a continuously strong force in the campaign for autism rehabilitation. After seeing how the needs for evaluation and training of over ten thousand households with autism were met by ALSOlife, Daddy Bubble is also willing to use his company as a social enterprise in this fight. “I’m willing to use dynamite to break down the barriers for children with autism and push more and more parents to consider the question of what will happen to our children when we are gone.”

谁来打响自闭症康复这场战役?

 来源:中国发展简报  作者: 张欢
据美国国家卫生统计中心2016年报告,美国3至17岁儿童自闭症发生率达1/45(2.2%),而我国自闭症患病率约1%,自闭症人群超1000万,自闭症儿童超200万,并仍以每年近20万的速度增长。

 

    1000万相对于13亿人口来说不算大数字,但如果将这一比例回归到生活,1%的发病率意味着每一个中型规模幼儿园里至少有一名自闭症儿童。而每一个自闭症儿童的确诊,都意味着整个家庭将要面对极为艰难的情感调整和康复治疗带来的巨大心理与经济压力。他们的生活轨迹将完全改变。

 

评估与个别化训练是自闭症康复训练的关键

 

       发现、确诊、康复、融合,通常来说,自闭者儿童的康复轨迹逃不出这四个阶段。只是每个人在不同阶段停留的时间长短不一样。有的孩子由于家长意识比较警觉,2岁左右就能发现并及时干预;有的孩子上了幼儿园由于与同侪的表现差异甚远,由幼儿园老师发现;还有的因为当地医生对自闭症的不了解而误诊为癫痫、脑瘫等疾病,在很长一段时间里家长和孩子奔波在寻求确诊的路上。

 

       哪怕经过了确诊这道坎儿,家长们还会一不小心在康复阶段掉进陷阱。鱼龙混杂的自闭症康复机构、自圆其说五花八门的康复方法、各种民间抱团取暖的QQ群,无头苍蝇似的家长被各类信息轰炸炸昏了脑袋,每一个“治愈”、“康复”的字眼都如同一根救命稻草,家长们一次次在尝试,一次次自我安慰“万一有效呢”、“试试呗,谁谁家的宝贝吃这个有进步”、“现在不试,我怕将来后悔”。在自闭症这个全世界至今无解的难题面前,家长们使尽了浑身解数。

 

        美国国家自闭症中心发布的2015年“国家标准项目”中更新了年龄在22岁以下的自闭症谱系障碍儿童和青少年的治疗文献资料。在针对该年龄段儿童和青少年的干预中,被确认为成熟的方法有14种:行为干预、认知行为干预、儿童综合行为疗法、语言训练、示范法、自然情境教学法、家长培训、同伴训练法、关键反应训练、程序法、脚本法、自我管理法、社会技能训练、以故事为基础的干预。

 

      据美国俄勒冈大学特殊教育系在读博士解慧超介绍,有效的干预方法第一个特点就是:它是完全个别化的,凡是那种一刀切、一套方法对所有的孩子,而不去进行个别化的设计的教育,我们都认为它不会取得什么样的效果。想做好日常的干预训练,首先要精确的了解孩子的水平——这就是评估的必要性。要制订好教学计划和训练内容,就需要个别化干预计划(Individual Education Program,IEP)——这就是IEP的必要性。两者相生共存,缺一不可。

       目前的情况是,只有进入了比较好的康复机构,孩子才有机会得到测评和一份IEP训练计划。而家长在背井离乡和付出每月不菲的学费后,极少数幸运的孩子能快速地拼入优秀的机构进行干预训练。大部分孩子在机构外面排队,甚至拿不到一份评估报告和个别化训练计划,家长完全不知道该做什么、如何做,在煎熬和等待中浪费孩子的黄金干预期。

来源:ALSOLIFE

 

       有调查显示,自闭症家庭平均每月用于家教与干预的费用有近23%的在6000—1万元,18%的家庭月花费在1-2万元,甚至还有2%的群体月花费在2万元以上,意味着有接近43%的孤独症家庭年花费超过7.2万元。作为对比——2016年全国家庭可支配收入,最高的是上海,11.5万元;第二的是北京,11.3万元;即使对于这两个城市家庭,干预的年支出也超出了50%,对于其他城市更甚。

 

    高昂的花费让许多家庭在机构待了3个月或半年以后不得不撤离,而更严峻的现实是,90%以上的  机构不接受6周岁以上的儿童,这些孩子终究会回归家庭教育。

 

平台实现在线评估、定制每日康复计划,免费为家长开放

 

早在1993年,我国第一家专门的自闭症康复机构“星星雨”由自闭儿家长田惠萍创立。“只培训家长,让家长培训孩子”,这是“星星雨”的办学理念。目前,排队参加为期11周的专业ABA学习需要等待两年时间。

 

星星雨是我国最早的自闭症康复机构

 

       由于自闭症需要终身干预,家长们掌握康复方法并贯穿日常生活成为一种态势。田惠萍十分赞成家长在生活中教:“我们所谓的康复目标是让孩子和家长的生活质量得到提高。”

 

      在北京自闭症家长圈子里流传着“三个火枪手”的“传说”,这“三个火枪手”是三位令人尊敬的自闭症孩子的家长——秋爸爸、刘爸爸和泡爹。他们的一个共同点是孩子都是中重度孤独症患者,其中秋爸爸和刘爸爸各有一对双胞胎儿女。另一个共同点是他们三位都因孩子的病症而系统学习了孤独症的干预方法,并用自己的所学所思帮助新家长。

秋爸爸和秋妈妈在央视节目《朗读者》

2017年2月15日,在这“三个火枪手”的努力下,一个名为Alsolife的网站横空出世,这个自称“中国自闭症家庭评估干预平台”的网站以自闭症医生郭延庆提出的ALSO理论为基础,提供了六个维度的评估和干预计划,对所有自闭症家庭提供免费的支持和帮助。

       泡爹(张之光)向中国发展简报介绍了网站建设的初衷:“2015年6月,儿子确诊后,我像所有的新家长一样开始疯狂学习自闭症的知识,看了五、六十本书以后,对于这个病症有了一定的了解。抬头看看周围,发现所有人都削尖脑袋往机构里钻,而之后呢,机构上完以后呢。目前我国已确诊的自闭症患者才30多岁,当他们老去,我们的孩子长大,以后的归属才是我们需要思考的。”

 

       一个偶然的机会,泡爹认识了郭延庆医生。泡爹发现,最契合他们目标的正是郭延庆教授提出的ALSO理念:立足现在(两三岁),放眼未来(考虑到孩子二三十岁甚至更长生命历程的需求),在现在与未来之间架起一座桥梁。通过它,来实现孤独症儿童从自理到自力再到独立的关键能力的转变和提升。

 

        具体而言,如果在每天的生活里贯穿了ALSO的干预理念,尤其是A(认知+学业)L(生存+生活)S(社会+社交)领域的内容,则O(职业)通常只是一个机缘就可以促成。

 

       2月15日上午,Alsolife网站开放4岁以下儿童使用功能的内测,需要内测邀请码才能使用网站。自闭症圈的家长口耳相传,一天时间里,3个500人的微信群满员,群里有郭延庆大夫、有秋爸爸、刘爸爸、泡爹等,家长们顿时振奋起来,犹如一帮散兵游勇找到组织。经过8个月的发展,目前Alsolife已经建立18个500人的微信群,另有3个外部学习群,共1万多实名用户。

 

   “我们给家长提供简单可上手的评估工具。原先需要使用海外评估系统,每次使用要获得授权,费用不菲,还需要专门的培训老师操作,这个也很昂贵。现在通过工具和算法可以快速给孩子进行评估定位,评估以后,系统会根据每个被测者所缺失的能力定制每天的训练项目,家长只须按照这个定制的日程表就能完成每日的干预,而且这些干预的项目都和将来自闭儿将来可能从事的职业有关。”泡爹说。

 

       为了实现这个目标,Alsolife团队经过了3个月大量的整理、筛选、分析,把国内目前可以见到的所有行业、职业、职位都做了一个梳理,整理出了一个完备的职业大数据库。

 

下图是卫生和社会工作行业的一个拆分例子:

接下来,通过类似这样的层层拆分,他们又把所有职位需要的能力做了逐一剖析,并且对照目前自闭症孩子的真实就业数据,汇总出了一批最适合自闭症孩子从事的职业:

 

    再下来,这些职业又被进一步拆分,细化到了从事这个职业所需要的所有层级的能力,并对每个能力点都进行了打分定阶,才形成了网站可见的一个个训练点。最后,再把这些技能点与每个使用平台的孩子的能力进行一一对应,并进行自动推送。

 

上图是从 “花艺师” 这个职位的能力拆解图中截取出来的一小部分,我们可以看到,从顶层的职业技能(如:识别花类、能按订单扎花等),一直拆分到最底层的认知、语言、自理等能力(如:识别常见的植物,认识数字、会归位物品等)。

 

       因此,ALSOLIFE平台上的每个训练内容,都不是凭空想出来的,而是由一个个孤独症孩子有可能做的职业所需要的技能倒推拆分出来的。类似于职业技能库这样的大数据库,ALSOLIFE平台上还有两个:生活自理库和生活场景库,它们加在一起,构成了现在平台上海量的训练内容。

 

今天的训练,为了明天的生活

 

       对于自闭症康复行业,泡爹认为“问题很多”:“自闭症目前已经发展成一个流行病的趋势,现实是大家全都瞄准了小龄的康复市场,觉得自闭症康复比早教更容易掘金,鲜有人关注到大龄自闭症患者的就业和中老龄的安置。我们的想法是让小龄的康复费用服务于大龄的将来。我们的孩子目前还小,家长还有经济实力为他们的康复买单,而一旦我们年纪大了,失去了经济能力,谁会支持我们的孩子呢?”

 

     百年之后,孩子何去何从?

 

     不少有自闭症孩子的家庭选择“二胎”,寄希望将来“手足相望”,同时,“二胎”也有20%的风险是自闭症患者,这更像是一场命运的赌注。随着信托概念的普及,越来越多的家长也开始将目光投向信托领域。更有一些“实干派”,大家联合起来去山区考察,希望找到一片适合自闭症患者的净土,打造成日本“榉之乡”类的自闭症家庭养护安置模式。比如北京康纳洲金寨星星小镇,选址大别山区,目前试运营一个多月,也引起大量大龄自闭症家庭的关注。

 

    在应对自闭症这场战役中,家长是永恒的生力军。泡爹也更愿意将目前的公司定位为社会企业,毕竟Alsolife解决了1万多个自闭症家庭对评估与训练的需求。“我愿意扛起这个炸药包,打破孩子只能进机构训练的局面,也让越来越来的家长意识到这个问题,思考百年之后我们的孩子应该怎么办。”

Translated by Emile Dirks, Jennifer Germann, Hannah Tan

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