Having been an autistic volunteer for 14 years, Xue turned the story that happened in the autistic group into a movie "Ocean Paradise".
There is a shocking fact hidden behind the "Ocean Paradise": Chinese mainland1autistic patients aged 6 to 60 are completely out of the coverage of the existing laws and assistance system, and the public lacks understanding of their plight and cannot get timely assistance, and some families in trouble often walk into a dead end. "I hope that through this film, everyone will pay attention to the plight of this group of autism. If I just talk about the film itself, I would rather not do this interview. " At noon on June 27th, Xue said in an interview with Southern Weekend reporter.
It is impossible to communicate with them.
From 65438 to 0985, the first named autistic patients appeared in China. Thanks to the first batch of medical workers who returned from studying abroad after the reform and opening up, Chinese mainland has the diagnostic criteria for autism. Previously, such patients were mostly classified as mental illness and mental retardation. Because autism is a new category, China's official definition of disabled people does not include them, and there are no relevant laws and systems to help them.
From 65438 to 0993, Tian Huiping came to Beijing and founded the first non-profit organization serving autistic children in China-Beijing Xingxingyu Education Research Institute. Most autism institutions in China are founded by parents with autism according to the model of Xingyu.
I came into contact with autism on 1994. I was a graduate student at the Film Academy. One spring afternoon, I read a report about autism in a magazine. Later, I contacted the reporter who reported it and found Tian Huiping of Beijing Xingxingyu Education Research Institute.
At that time, Xingxingyu Institute of Education borrowed the house of Beijing School for the Deaf and worked in Sakura East Street. The house is actually half a corridor with a corner. They partitioned off the top of the corridor and used that area as an office.
The star rain I saw at that time, only three teachers, took in about 20 autistic children. The desks, chairs and benches in the school are all old, and the teaching and office are in that narrow area. Three teachers face more than twenty children, and besides taking care of them, they have to cook for them.
Seeing that they were too busy, I helped them. Since then, I have been a volunteer in Chineydy, going there for one or two days a week.
For those autistic children, it is basically impossible for us to communicate with them. Basically, we just take care of these children and have no way to communicate with them. What we did at that time was the simplest rehabilitation work, such as cooking lunch for them, washing dishes and dishes for them, and taking them out to play if we wanted to go to the toilet. At that time, their training method was relatively simple, and they also crossed the river by feeling the stones, because the research on autism was just beginning. All the classes for autistic children are taught by teachers. Because Xingyu is a non-governmental organization, part of the funds come from students' tuition fees and part from social donations. The tuition fees paid by those children are only symbolic, which is not enough to offset the operating costs of the school. The gap between office and teaching funds was completely made up by social donations, so the salary of teachers at that time was very low, maybe two or three hundred yuan.
There is not enough money to recruit good teachers. Xing Xingyu's three teachers at that time were laid-off from the city and girls who went to work in the city from the countryside. At that time, Tian Huiping also looked for teachers from kindergarten teachers and special education, but there was no result. First, because there is no professional work experience, second, psychological barriers, and third, too hard work and low wages.
At the beginning, the teachers of Xingyu flowed quickly, and most of the teachers found later were rural girls. Of the teachers I know, only two have stayed, and they are still stars. Until six or seven years ago, Starrain's financing ability was stronger. With the fixed support of some foreign institutions, their office teaching equipment has been improved and the first batch of college graduates have been recruited. Besides receiving professional training, they also go abroad to work and study. These people have become the backbone of their management.
The autistic children I first came into contact with had high functions and low functions. The high function is usually called Asperger, and the low function is called Kena. There is a big gap between the two children. Like a high-functioning child I met in Shandong, he has now graduated from a high school in Macao and has taken the college entrance examination. If you talk to him for a while, you won't think anything wrong with him.
Yang Tao, the child of Tian Huiping, the founder of Xingyu, is still slightly better in low function. Children with simple low function can hardly speak and have many emotional problems. For example, the girl I saw in the maintenance center has been running around the house, and the other child has basically not talked, and has been wrapping her head in clothes, which is very serious.
I saw a child in Shandong, a boy in his twenties, dressed normally. Later, after listening to their teacher's introduction, it seems that the child's parents are very famous heart and brain surgeons in Shandong, but the training of the child is not good enough. Children basically don't wear clothes at home, they just defecate casually, or sometimes they are naked in front of guests, and their parents ignore him, which is equivalent to giving up completely.
I also contacted an autistic parent around Shenyang. The child is about eight or nine years old. He can't go to primary school. He's not an IQ problem. When you talk to him, you will feel that he knows a lot and is not stupid, but some of his words are unreasonable. You'll know there's something wrong with him This is called a serious social disorder. His mother can't accept the fact that the child is sick at all, and she doesn't want to leave the child in this circle. She told me that the child just has some psychological problems. When he is at school, I will ask him to raise his hand, listen to the teacher, and don't disturb the classroom order in class, as if that means teaching him like this will be fine.
Later, I told his mother that the method she is using now is useless to this child, but it may delay his best treatment and training period. Many parents hope to cure autism. As far as I know, autism is incurable at present. The United States and Europe, which first began to study this disease, have not found the root cause and cure for decades.
At present, the pathogenesis of autism is still unknown in the medical field and has not been studied; The disease is basically regardless of race and country; Judging from the current statistics, the proportion of Kochi families with highly educated parents will be high; Judging from the ratio of male to female, the incidence rate of boys is higher than that of girls, but once girls are autistic, their condition will be more serious.
Faced with this reality, all our efforts are aimed at cultivating these children, getting along with them in a way, or accommodating them, creating an inclusive and tolerant atmosphere and environment in our society and giving them a more reasonable living space.
This movie is not very cruel.
In some developed countries in the west, the government will provide free venues for such public service organizations, and will also directly allocate funds, and some large foundations will also provide long-term funding for them. According to China's laws, Tian Huiping's "Family Assistance Fund for Autistic Children" cannot be Public Offering of Fund, nor can it directly solicit donations from society and enterprises, but can only accept individual directional donations sporadically.
Lack of funds is all the difficulties faced by private autism institutions.
From 65438 to 0998, he graduated from the Film Academy and worked in the Science and Education Center of CCTV. At this time, I began to help Xing Xingyu convert some video materials, or find a place for them to have a meeting, provide some stereos and do some publicity work.
Because of lack of funds, Chineydy can't even pay the rent. I have moved several times in the past ten years. After leaving the deaf-mute school in Sakura East Street, they moved to the office of China Family Planning Commission in Sakura West Street, rented an office building there, lived there for a while, and then moved to the present Xu Dong Garden in Tongzhou.
A family with autistic children can be very difficult. A child may not be able to speak the first time, but will not listen to instructions the second time. For example, let him sit or stand, don't scratch with your hands when eating, don't touch the fire when it is too hot, and don't take off your pants and shit on him when you go to the toilet. These instructions are difficult for him to follow, and he can't enter normal kindergartens, primary schools and junior high schools.
Besides, the child has to watch at home and can't be left to fend for itself. Some parents will give him to grandparents, aunts, aunts and so on. If you have deeper feelings for children, you want to quit your job, find a training school for this kind of autism, and then receive this training.
At this time, Xingyu has changed from trusteeship to educating children and then training parents. This adjustment is based on the fact that many children have improved after systematic education in school. They will respond to the teacher's training, even respond to the teacher, or communicate with the teacher with their eyes and simple language. But when I got home, the original progress was not only gone, but also some bad habits were added.
Tian Huiping realized that it is not enough to train children with autism. They need long-term and stable education methods to be effective. Since then, Xing Xingyu has adjusted his education direction and turned his focus to parents of autistic patients. Let them accompany their children to class. Teachers in Chineydy will give on-site guidance and learn the teaching methods of taking care of children, so that they can take good care of their children at home.
I remember Xing Xingyu moved for the second time and took in an autistic child, Yang Yang. That is the oldest child I have ever met, about sixteen or seventeen years old. At that time, Yang Yang worked as a school cleaner, and the school paid him a little salary. At that time, the child's job was to mop the floor. Normal people will bypass this person and drag it again, but when he gets there, he will stop. Be sure to wait until you get out of the way.
Yang Yang doesn't know the social rules. No matter which office, he will knock on the door with a mop, and then mop the floor when he enters, no matter whether the people inside are at work or in a meeting. Later, I used the detail of mopping the floor in the movie, because mopping the floor is the simplest labor we think, and autistic people can't do it well, so it is really difficult for them to adapt to society.
I also know that there are examples of parents giving up. Xing Xingyu has a mixed-race child. His father is French. He works in the French Embassy in China. He has a high position. After he came to China, he married a wife, China. As a result, he gave birth to an autistic child. Then he hired a nanny to take the children to train in the rain. I saw that the nanny came most of the time, and sometimes his father came and his mother gave up the child and left.
After Xing Xingyu moved to Tongzhou District, one family went to do training. Then one day, she suddenly said that the child was lost. His mother said it was at a crossroads in the country. As soon as she turned around, the child disappeared. Later, a security guard at the guard said that he had seen the 3-year-old child at that time. I feel now that my parents have completely given up, because the place is desolate and there are no buildings around, only vegetable fields. To tell the truth, I didn't write this film very cruelly. In fact, there are many autistic children who are really locked at home.
Ultimately, it depends on the government.
At present, the statistics of autism in China are limited to preschool children in cities, excluding autistic patients over 16 years old. Hospitals in rural areas don't even have the diagnosis of autism, and they don't have the opportunity to enter the urban education system. Xue said that we don't understand such a huge group and their living conditions, and we can't see them.
Because of an interview, I made Ocean Paradise. At noon in 2000, a group of foreign journalists came to Chineydy to interview parents of autistic patients who were resting at noon. A reporter asked a parent, "You take special care of your children now. What will your children do in case you get sick or die? " I saw the parents who were ready to answer and cried in public. All the parents present at that time began to cry.
I was particularly shocked. This problem is also the most worrying problem for all parents of autistic patients. China's current legal system only covers the nine-year compulsory education, which provides some protection for autistic children. These children are 65,438+06 years old. After graduating from junior high school, they have no security until they are old. The state does not assume any responsibilities and obligations, which is a very serious problem of institutional deficiency.
Many parents of autistic people are born after 80s. They are all only children and have no brothers or sisters. For their autistic children, only grandparents, grandparents and parents can rely on them. No uncles and aunts, nothing. What will these children do after their grandparents and parents die? Who should I give it to?
The Yang Yang I know should be over forty years old now. The first batch of people diagnosed with autism in China are all of this age. Their parents are old and in poor health, and they are also facing this problem. Not only autism, but also people with disabilities such as cerebral palsy, mental retardation and mental retardation have such problems, and there is no special law or institution to take care of them.
I have seen in some children's welfare homes that some children with severe cerebral palsy are in their twenties and have been lying down since birth. Their heads are as big as wax gourd. Without any treatment, they can only wait for death.
In recent years, I met foreigners from China and their adopted children at the airport. I know that there are many foreigners who adopt disabled children in China, both mentally and physically. Every time I see such a scene or news on TV, on the one hand, I feel that they are very caring, on the other hand, I envy their country's security system and welfare system.
To put it simply, in these countries, raising such a child will not cause great trouble to the family, or make his life unsustainable subversively, so they will come to China to adopt a disabled child and make such behaviors and choices. When he brings our disabled children back to his own country, this system will play a role, and all medical security and community services, including insurance payment for surgery, will be provided to him.
At this time, I think what those countries have can make people live with dignity, and that is the most awesome place. Parents of autistic people in China are all on their own.
In the face of reality, families in China have made different choices: parents with good economic conditions and high academic qualifications in big cities choose to immigrate to Europe, the United States and Canada with their children, where there is a government public welfare service system covering autistic patients from small to large; Urban families with relatively good economic conditions choose to have another child according to government laws, and let the second child take care of the boss after his death; For those families who have financial difficulties and don't want a second child, this is an unanswered question.
What happened to Wang Xincheng, the hero I wrote in the movie Ocean Paradise, is actually a realistic problem for autistic people in China: schools with mental retardation only care about nine-year compulsory education; Orphanages, welfare homes and nursing homes have no professional caregivers and do not accept autistic patients; In the part of commercial insurance, the insurance company thinks that the risk is too high and excludes autistic patients from the insured; The medical insurance system enjoyed by ordinary people does not cover autistic patients; Autistic people have few employment opportunities in social security.
In the movie, Dafu was taken to a private school by the old headmaster who had taken care of him for many years, and it had a happy ending. I admit that I am an idealist. Dafu's father thinks that children can go to school by themselves, pack their clothes by themselves, or do some particularly simple things by themselves. This has been repeatedly educated, but this tail part still has idealism.
In fact, I think, even if there is such an institution, how can we ensure that this institution can exist for a long time? Who will supervise your money? Because autistic people are incompetent, how can you guarantee that their interests will be guaranteed for life? It is unrealistic to entrust other relatives to take care of you. Can you trust him to take care of your children all his life? This idea is very common among parents of autistic people.
Therefore, I think this problem ultimately depends on the central government, setting up specialized institutions, improving laws and systems, and earmarking funds, so that this problem can be completely and properly solved. There is no alternative but institutionalized guarantee. China's GDP is so high, and its annual fiscal revenue is so high. We should consider fulfilling our national obligations more deeply, and the lack of this system should not exist. This is my original intention and vision of shooting ocean paradise.
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In recent years, the incidence of autism is on the rise worldwide. It is estimated that there are 35 million people with autism in the world, including more than 7 million in China. Although the number of people with autism in China has not been counted, the conservative estimate has exceeded 1 10,000. From June, 5438 to February, 2007, the United Nations General Assembly passed a resolution, and since 2008, April 2 every year will be designated as World Autism Day, in order to raise people's awareness and concern about autism.
At present, many countries have promulgated education, training and maintenance programs for autism. The Obama administration of the United States listed autism as the top ten medical tasks of the government. Canada, Japan and Hong Kong are also constantly improving the welfare of autistic people and creating a better living environment for autistic people. In 2006, autism was listed as a mental disability for the first time in China, and it was included in the relevant security system. However, due to the overall low level of social welfare and security for the disabled in China, many autistic patients and their families are still in a very difficult situation.
In view of the unknown cause of autism, education and training are still the main treatment methods for autistic children. At present, there is only one public autism school in China-Connor School. Since the beginning of school in 2009, the school has only enrolled 24 students every year. In addition, there are about 20 private autism training institutions, mostly for parents of autistic children. Although the training fee is high and the entrance threshold is not standardized, it has become a helpless choice for most parents.