Environment Research paper.
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YANGZIZHANG--sampleresearchpaperFEB14.docxZhang 4
Yangzi Zhang
English 102 – Wyman
Research Paper Final Draft
Dec. 6th, 2013
Guardians on the lonely planet: an investigation
Into the socialization and care of autistic children in China
With the ringing of the bell, I stood in the classroom, one of the students who were competing to be a teacher’s assistant, and greeted the students in the classroom. Nobody responded. Some children stayed alone in the corner, some whispered to themselves, and some shouted, cried and even ran. Facing the children, standing still, even though there might be only one step between us, I could not come up with an appropriate way to “build the connection,” as the instructor taught us. It was the first day of my three-month volunteer life at Stars And Rain, the first non-profit specialized education institution for children with autism in China, established in 1993 (“Stars and Rain”).
That class is called “Casual Cognition,” part of the rehabilitation courses, and it teaches the children how to focus by studying pictures of objects—a butterfly, an eraser, a red water cup—and finding the objects on a table. Taotao was one of the children studying in that class, and he was also my test. I thought he didn’t like me at first, because he refused to drink the water I gave him. Later on I knew that he only drinks Sprite, which is one of his routines: he only walks in right angles, never chooses a direct route, and he only wears clothes that are laid out on his bed, whether or not they are clean.
The American Psychiatric Association’s official definition of autism is “a disorder of neural development characterized by impaired social interaction and verbal and non-verbal communication, and by restricted, repetitive or stereotyped behavior.” It is generally involved with the following characteristics. First is Social Development, because “people with autism have social impairments and often lack the intuition about others that many people take for granted.” For example they smile and look at other less, have less eye contact, and respond less even to their own names. Second is about Communication, and about half of autistic children do not have natural speech ability to meet their daily communication needs. Third is Repetitive Behavior, such as hand flapping, head rolling, or body rocking, and “intention to follow rules,” such as putting all the things in a raw. It also has other symptoms, which are independent of diagnosis and affected by individual and families. For example, about 0.5% to 10% of the children have unusual abilities and extraordinarily talents. I watched a video on You Tube, and it introduced a British named Stephen Wiltshire. He can draw anything as long as he has seen it just based on his amazing memory (the Human Camera). However, all the symptoms should become apparent before the child is three years old to count as autism (American Psychiatric Association).
Autism was first used in by Leo Kanner from Johns Hopkins Hospital in 1943. He reported that there were 11 children with “striking behavioral similarities”, which was described as "autistic aloneness" and "insistence on sameness" (Kanner, 2:217–50). However, the concept of Autism was first imported to China in 1982 by physician Guotai Tao, who worked in Children's of Mental Health Center in Nanjing (Yu, Zhang CNews.com). As the country with the biggest population in the world, China has been estimated that has about 7.8 million individuals with Autism, with more affected boys than girls. The number of newly diagnosed cases of ASD seeking medical services has increased substantially. In some regional studies conducted in China, the prevalence of autism was 1.10 per 1000 children in the city of Tianjin (2004), 1.25 per 1000 children in Jiangsu province (2001), 1.34 per 1000 children in Beijing (2007) and 2.27 per 1000 in Harbin city (2010) (McCabe 510-526). Although the number of autistic children in China is quite huge, there is a general lack of professional knowledge and diagnostic criteria.
In 1993, when “Stars and Rain” was founded, there were only 3 authoritative physicians nationwide who had diagnosed autism (Wu 3). In terms of social care and education, no matter of school or medical institution, there was nowhere that could provide services and related information. Because of the lack of special education resources at the early period, plenty of parents queued for two or three years to strive an opportunity of rehabilitation education to their child.
I heard and witnessed lots of moving stories the time when I was working there. A mom went to the market to pick up deserted vegetable leaves to cook for years to save money. In order to get their child the treatment, some parents spent out all their savings, and their families were falling apart and their marriages were facing disintegration. The journey for seeking the treatment was filled with desperate eyes, secret sigh and countless tears.
The establishment of “Stars and Rain”, the first non-profit institution to advocate education for children with autism, is a milestone during the development of a social care system for autistic children in China. During the past twenty years, about 400 facilitating agencies for autism were founded in China, about 50% are for 3-6 years old children, about 13% are for 7-12 years old children, around 17% are for 12-18 years old, and the rest 18% are for adults. However, the number of autistic children has also raised 20 times as many as before. (Yu, Zhang CNews.com). Part of the reason is the improvement of the diagnose methods and the increment of people’s awareness of autistic disorder. Although it has developed a lot during the past decades, there still remain lots of problems to be solved.
A study conducted by Social Communication and Child Rehabilitation Institution randomly selected 100 Chinese families as sample, showing that 74 children were diagnosed in hospitals while the remaining were diagnosed in rehabilitation centers (Zhang et al. 158-159). Another study did by China Disabled Persons’ Federation (CDPF) interviewed 60 parents of children with autism in Jiangxi province reported that 75.9% of children were correctly diagnosed with autism initially while 24.1% were first misdiagnosed as other mental conditions. And prior to receiving a diagnosis of autism, 75.6% of parents had no knowledge about autism (CDPF).
In the US, practice guidelines for service provision of ASC have been published regularly since 1999 by the American Academy of Child and Adolescent Psychiatry (Fiskan 32). The American Academy of Pediatrics (AAP) proposed a developmental surveillance and screening algorithm for pediatrics preventive care visits for ASC in 2006 (Chris et al. 1183). After diagnosis, the right thing to do is to attend an intervention programs right away, because the longer a child with autism goes without help. The harder they are to reach.
Several types of intervention programmes have been provided for children with ASC in the US, such as speech therapy, social skills teaching, behavior management, and service coordination/case management (Kriebel 13). I haven’t found any standard methods for childhood autism diagnosing in China. It seems that every hospital and institution is using their own ways for recognition of autism. According to the study conducted by Centers of Disease Central (CDC) in China, which investigated the awareness among physicians, pediatricians and parents in comprehensive hospitals and used a self-completion questionnaire that included 22 items related to the “concept, diagnostic features, etiology, assessment and treatment of autism.” Although it turns out that the hospital based pediatricians are more knowledgeable about autism than community physicians and parents, parents are the most knowledgeable about the existence of diagnosis and 44% of the parental knowledge about autism is from the internet and media coverage about autism, only 16% is from health or rehabilitation professionals (CDC). It indicated that there is a general lack of professional knowledge about autism even among doctors in China.
The intervention programs in the state-run rehabilitation centers in China such as the intervention in Nanjing Brain Branch hospital included one-on-one instruction, sensory integration therapy, group music therapy and game classes. The center was set up for children aged 3 to 10 with autism and required the presence of one caregiver as an observer during the classes. The one-on- one instruction was attended by all children in the center which was comprised three modules: fine-motor tasks, language exercises and pre-academic skills. This study suggested that one of the main intervention strategies in Nanjing Centre was parents’ involvement and learning from therapists by observation, which allowing parents to continue the intervention with their child at home (McCabe 510-526).
The intervention programs provided in private rehabilitation centers was identified by one study of 28 private institutions conducted by Yanqing Guo, who investigated methods using in private institutions including the following: “(1) Comprehension therapy: Applied Behavioral Analysis (ABA), Relationship Development Intervention (RDI), Floor time (DIR) communication development therapy, Treatment and Education of Autistic and related Communication handicapped Children (TEACCH), Mr. Liu ability development therapy, Mr. Liu scenario teaching method, PCI teaching method; (2) Singular therapy: sensory integration therapy, music therapy, picture exchange communication system (PECS), social story therapy, computer assistant therapy; (3) Other therapy: behavioral therapy, acupuncture and massage therapy” (Yuan et al., 2009). All 28 centers adopted the ABA therapy, sensory integration therapy, music therapy, and PECS therapy. 21 centers (75%) used the TEACCH as a therapeutic method (Guo 523-526).
(Sun et. al Table 2)
As shown in this table, in addition of state-run and private rehabilitation centers, attending main stream schools is also an option for parents of autistic children. However, there is no specialized methods and policy in those schools.
It is recommended by the American National Academy of Science that intervention for autism should begin no later than 6 weeks following the diagnosis and the educational interventions are those most likely to make a significant difference to the “prognosis and well-being” of a child with autistic spectrum disorder (GL, 17). According to the study reported by the Chinese Autism Society, in China, one in five children with autism received intervention immediately after diagnosis while 65% received within one year post-diagnosis. And 51.4% of parents accepted the initial diagnosis straight away and began to seek an intervention for their child. In contrast, 48.6% of parents delayed seeking help, and 23% of parents did not believe the diagnosis and took their child elsewhere for further assessments and diagnosis. The rest 12% of parents did not seek an intervention due to financial limitations in their personal circumstances, and the rest decided to take care of their children by themselves because of the lack of trust of the rehabilitation institutions (The Chinese Autism Society).
There is a Chinese idiom says that wind comes from hollow cave. It reveals that all the phenomena form from reasons, so do the delayed interventions. I conclude several reasons based on my research:
First is the defect of statistics, which shows that because of the limitation to the understanding and cognition and the backwards of diagnosis and screening methods, we cannot conclude a reliable number of Chinese autistic children since even the data of official documents exist disparities from facts. McLennan in his report about service receipt by young children with autistic spectrum disorders suggested that “Children with autistic spectrum disorders and their families require a range of assessments and support services” (McLennan 1192). However, due to insufficient support provided by the uncompleted statistics, government cannot make relevant policy based on the reality. Therefore, autism is lack of protection among disabled people in China.
Second is the service provision problem. The lack of related policy, professional diagnosis and limited resources caused that many children miss the best intervention period. And most of the existed educational institutions and rehabilitation centers are private, and the support and financial aid given by the government are limited, thus few of them can operate smoothly with independent financial affairs. It can be proved by the interview with all the 28 rehabilitation centers, 36 teachers in mainstream schools and 216 parents of children with autism in Jiangsu province. Within the 28 centers, only five were operating smoothly and total of 5100 children received special intervention programs in Jiangsu province, which accounts for less than one quarter of the provincial estimated number of children with autism (Xie 37-39). Few opportunities are available for children who are seeking for treatment, how could this happen.
Third is the quality of the teachers and conditions in the educational institutions and rehabilitations, because not all the so-called education and rehabilitation methods are qualified due to the lack of know and resources. What is more, there are no ongoing learning programs available for therapists and teachers, making it difficult for institutions to improve and update their intervention methods and human resources. In terms of mainstream schools, there are lots of difficulties for autistic children integrate in mainstream educations. In mainstream schools in China, there is no special intervention or special assistant programs, but “Suiban Jiudu” policy which allows children with disability to attend regular class. However, most of the teachers in mainstream schools do not want to accept a child with autism in their class because they believe the behavior of the child will disturb their classes. And only 14% parents of typically developing children being interviewed agreed to accept autistic children studying with their own child. Because they thought the negative language ability and behaviors will influence their children (Xiao).
In additions, we should also take the labor employment and adult protection into consideration. Because even the “GongLiaoZhan” and Shelter Factories, which are specialized to provide jobs to mentally disabled people in each province, reject to accept autistic workers, leading that the autistic children have nowhere to go and cannot self-reliance after they leave rehabilitation centers, but have to stay at home and even suffer from functional retrogression, symptoms worsen, and cause the economic burden of the families. It is what expressed in the movie Ocean Heaven (O.H. Xue), in which Jet Li makes a great change by playing a father who is suffering terminal cancer and desperately looking for a shelter for his 21-year-old son, Da Fu. The same as the reality in China, Da Fu is too overage to go back to school, however, it is also difficult to find a suitable job for him as a grown up. Even the cynical among you will be touched by Jet Li’s attempts to bond with his autistic son and educate him about the harsh world he has yet to fully experience and in which he will soon be left alone. This is one of the concerns shared by all the parents of autistic children, and shows the defects of China’s social care system, which is also the problem we should solve.
Actually, there are a few hospitals and institutions that equipped with advanced technology and professional pediatricians, such as Children's Mental Health Center in Nanjing, where the first autism children was diagnosed, intervention in Beijing Brain Hospital and several state-run rehabilitation centers. However, the current situation about the social care in China is similar as using a glass of water to try to put out the big fire in a building, there still remain lots of problems to be solved and there still remain a long way to go.
The general development plan in China is called “Five-Year Plan”, which uses 5 years as an operating period to design and conduct development plans all around to be finished during that 5 years. And from 2011 to 2015 is the “twelfth – five” in China and it has drafted the following steps to protect and help children with autism (Liu 12).
The social protection and care for autistic children in developed countries is a social work, which include a set of treatment, rehabilitation, education, employment and pension perfection regulations. In Europe, Hong Kong and Taiwan, the rehabilitation expenses of all the children with autism is paid entirely by government, and the adult vocational skills training programs and employment opportunities are available. Therefore, to improve the current situation in mainland China, the first is to improve the relevant laws and regulations to protect the fundamental right of autistic children. Children with autism should have the equal rights as other children, not only being protected by the existed Compulsory Education Law which aimed at providing free education to children of right ages, but also should the specific specialized laws to protect all the rights of them.
It is also essential for the government to accelerate the improvement and completion of government agencies to implement various functions and governmental roles. Third suggestion is to increase the financial support to both institutions no matter of state-sun or private, and the families with autistic children. Especially for the latter, almost all the responsibilities and obligations are assumed by the parents, and they also face enormous psychological and economic pressures. According to the research conducted by Children’s Mental Disabilities Center in Beijing, the annual cost of an autistic child in New York is about $ 100,000 and it is about 120,000 Hong Kong dollars in Hong Kong region. However, the money in these areas is transferred directly to the rehabilitation center by the government (Weinberg 34). Among the current rehabilitation centers in China, 95% of then have the request of accompany of parents. And 70% of the families have to choose one parent to quit their job, causing the declines of household income and planted a curse of family conflict and contradictions (Zheng 35).
Although the small scale of autism rehabilitation centers across the country are now more than 400, the real qualified centers that can help children have a strong recovery experience and both technically and professionally equipped are few. Therefore, we should strengthen the management of rehabilitation institutions, increase the technical support and professional trainings. It is true that the attention and actions of autism are started behind in China, but we cannot slow down our development steps because of these defects. Instead, we are supposed to keep learning and improving all the time with full-hearted and love.
If the future situation remains the same as what it is now. Families would have to bear the extreme economic burden and sufferings. Most of the children would not have the chance to be educated and even cannot meet the basic requirements for living by themselves. If it improves along with the increase of social attention and care, it will provide hope and relief the heavy burden for families and give autistic children a promising future.
The backwards of the social care system is one of the many unavoidable problems during the developing of my country. I think it will get well-organized with standard functionality and broadened spread. Under the trendy of globalization and through the observing and learning from other advanced countries, it will find its own way out, which will match its own conditions better and easily-acceptable for people.
One of the great writers in China named Lin Yutang wrote a book-- My country and My People. There is a sentence perfectly expressed what I am trying to say:
I am able to confess because, unlike these patriots, I am not ashamed of my country. And I can lay bare her troubles because I have not lost hope. China is bigger than her little patriots, and does not require their whitewashing. She will, as she always did, right herself again. (我堪能坦白地直陈一切，因为我心目中的祖国，内省而不疚，无愧于人。我堪能暴呈她的一切困恼纷扰，因为我未尝放弃我的希望。中国乃伟大过于她的微渺国家，无需乎他们的粉饰。她将调整她自己，一如过去历史所昭示吾人者。) （Lin Preface）.
One of the important reasons for jet to play in the movie Ocean Heaven is that he is the founder of the “One Foundation”, and it is the first private charitable fundraising organization in China. They have activities every year, aiming at helping families with autistic children (One Foundation). These are the effort and changes that are happening in China.
At the end of the movie, Jet’s problems is solved that Da Fu takes over his job after he died. Da Fu even has understood how to cook eggs and how to take bus from work to home (O.H). These are the results of his father’s effort.
I feel lucky that I could get a chance to volunteer in that rehabilitation center, and I hope I can do more for them in the future. The same as what happened in the movie, I hope that with the actions and calling up of celebrities and the effort of the government, the problems of socialization and care for autistic children in China will also be solved someday.
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