On December 9, 2021, a public welfare photo exhibition in Beijing, paintings of children with autism. Photo/ Reporter Zhang Xu
Reporter/Gong Yijie
Daystar is also called Hyosung, which means "Enlightenment" because it appears before dawn.
Tao Siliang, president of Beijing Aier Charity Foundation, borrowed the name of this star to launch the project set up by the foundation for autistic groups in 2019, "Daystar Project". Her explanation is that "the cause of autism in China still has a long way to go, the majority of children and parents are still groping in the long night, and the improvement of professional knowledge and theoretical training are also the first steps in the beginning of the Long March." In her vision, the project may be a test of the star before dawn.
Autism, also known as autism, is a mental illness that occurs more often in children. Many children are reluctant to make eye contact with others, lack emotional responses, and often have language communication disorders and stereotyped repetitive behaviors. It seems that these children are trapped in their own world, as if they were "alien visitors", so they are also called "children of the stars" or "children of the stars".
According to the World Health Organization, about 1 in 160 people worldwide are autistic. There is still a lack of large-scale epidemiological research in the mainland, and the generally accepted data is that the prevalence of autism in the mainland is 0.7%-1%, and it is estimated that there are more than 3 million children with autism.
Roll out a public welfare project for autism, in Tao Siliang's words, to gnaw on the "iron mallet" that is more difficult than "hard bones". On the one hand, diagnosis and rehabilitation of scientific specialties are still rare resources; on the other hand, the problem of children's education, employment and survival security in the second half of their lives still need to be solved urgently.
Even if it is difficult to promote the solution of a single link, the guarantee plan covering the entire life cycle of the star is even more difficult than "picking the star".
But there must always be the first person to reach out and touch the stars.
In November 2019, Tianjin Yitong Autism Research Service Center became the "Daystar Project" autistic children's rehabilitation base, and Tao Siliang, president of Aier Public Welfare Foundation, and Zhang Yuanping, chairman of Yitong, unveiled the plaque at the scene. Photo/Courtesy of respondents
"Someone makes the tree, we do the sowers"
If you look at the life of an autistic child, they have too many obstacles to face.
After the appearance of the disease when they were young, the first hurdle they faced was whether they could be diagnosed in a timely and accurate manner, followed by whether they could get scientific and long-term rehabilitation treatment intervention. When it's time to go to school, can a child with autism go to school as normally as other children? Or do they have to choose special education schools, and from the very beginning they cannot enjoy quality resources and have to start separating themselves from society?
During this time, whether families can support their treatment costs is still a question, even if they do reach the teenage age, can they get a job and earn a salary like other children? When their parents are getting older, can they really participate in social life normally and ordinaryly, and can they smoothly ensure their own survival?
In 2019, the three-and-a-half-year-old twins of Mr. Bai's family in Qingdao were simultaneously diagnosed with autism spectrum disorder with developmental delay. "I never thought such a thing would happen to me. To be honest, it feels like life is out of meaning. Mr. Bai told The Chinese Philanthropist.
After getting the diagnosis results, Mr. Bai began to realize that it was no accident that he had previously perceived the "specialness" of the child. When they were young, the two children did not like to interact with people, and they learned to walk and talk two or three months behind their peers. When they take their children back to their rural hometowns for the New Year, they also do not have any curiosity about the cows, sheep and other animals they see for the first time.
When a child is thirsty, he doesn't say "I want to drink water", but just keeps pulling the adult's hand and wants to touch the cup - this is already the maximum amount of expression they can make.
Families like Mr. Bai, where twin children are diagnosed with autism, are called "double-star families," and they usually pay a greater price of time and money than the average autistic family. For a moment, Mr. Bai's psychological defense line collapsed.
Caring for and treating children with autism is a boring, arduous, and almost endless path – no matter how patiently parents try to talk or interact, they may not get any response from the child. Every child with autism has different conditions and needs, and things change as they age.
In addition to the uncertainty of the disease, how children should take care of their own lives, how to receive education, and enter society is a bigger problem. Mrs. Bai quit her job and stayed at home with the child's grandmother. The original ordinary working family, under the pressure of a medical certificate, had to be endlessly consumed around two children.
The difficult diagnosis and long recovery are only the first hurdles faced by children and families with autism, but they are already quite difficult to cross.
Twenty years ago, there were only about 10 doctors on the mainland who could diagnose autism. 10 years ago, this figure grew to 200-300 people, until 2020, the big quota was 500 people. But compared to the group of about 3 million children with autism, there are still too few doctors.
A mother of Xing'er once mentioned in an interview that in order to get a diagnosis, the couple ran away with their sons in Hangzhou, Shanghai, nanjing, pediatrics, neurology, brain, Chinese medicine acupuncture, as long as they can think of a way to seek medical treatment, they have tried.
"At that time, many doctors and experts would be called every month for consultation, and the telephone bill alone would cost hundreds every month. It wasn't a small amount back then. She said that once in order to hang up the expert number, she first ran to Shanghai to register, and then returned to her home in Zhejiang to wait. On the day of the appointment, she took the child to get up at three o'clock in the morning and ran to the shanghai hospital to queue, and the doctor read it in five minutes and failed to give any diagnosis.
In the rehabilitation process, the survey data on the official website of the China Disabled Persons' Federation shows that in 2017, there were 21,043 autism rehabilitation teachers on the job, and the ratio with the children was 143:1; as of December 2018, there were only 1,811 autism rehabilitation institutions registered with the China Disabled Persons' Federation.
Rehabilitation is essential for children with autism – behavioural modification, psychological intervention and companionship throughout the patient's life cycle can stabilize their health, enhance their ability to communicate and interact, and improve their quality of life. However, at the same time, the rehabilitation treatment needs of autistic patients are very complex, and at present, the criteria for judging "scientific rehabilitation" are not uniform.
In order to understand the ecology of the current national diagnosis and treatment and disability protection network, the Daystar team has been doing field research from 2018 to 2019 before the project landed.
Project commissioner Liu Meng ran a lot of places with the team at that time. She told China Philanthropist that when she goes to a province, the team will first go to the local disabled persons' federation rehabilitation center to understand the number of children currently accepted by the rehabilitation center and learn their rehabilitation model design.
This is followed by visits to rehabilitation hospitals to find out what diagnostic criteria they are using, the level of expertise at all levels of hospitals, the model of referral between cities and counties, and whether professional support is required.
They also visit local autism private organizations to learn about their experience in public welfare work in the field of autism and to find pain points that are still not covered.
In the diagnosis and rehabilitation process, what is the biggest problem at present? Liu Meng said that from the beginning of her contact with this project, she has always felt a profound problem, that is, the huge gap in medical level between regions and between urban and rural areas.
"I remember when I was in Guangdong, a professor said something like, 'A county-level hospital in Guangdong can diagnose autism.'" Liu Meng recalled, "But many places can't reach this level. The distribution of talents is uneven, and developed regions have the top talents in the industry, while many regions in China are still blank. ”
Daystar has set one of its key support targets in Ningxia. Ma Zhanxiu, director of the Ningxia Rehabilitation Center for the Disabled, told China Philanthropists that after the Ningxia Disabled Persons' Federation issued the Implementation Opinions on the Establishment of a Rehabilitation and Assistance System for Disabled Children in January 2019, there were 35 designated institutions in the autonomous region to carry out autism rehabilitation work.
And this number is about the size of a city in Guangdong – China Philanthropist understands that there are currently 32 autism rehabilitation institutions in Foshan alone in Guangdong.
There is a serious shortage of local medical and rehabilitation talents. "When we went to Ningxia, they said they were 'not a single seeded player.'" Zhang Bibo, secretary general of the Aier Public Welfare Foundation, recalled. Society for autism group lack of understanding, more prejudice, the salary income and social status of practitioners is low, many students of special education majors are not willing to engage in related work after graduation; in addition, the professional requirements of the rehabilitation division itself are very high, but the qualification criteria for practitioners have not yet been determined, and the lack of talents has forced this team to lower the threshold of entry.
Therefore, the first thing the team does in cooperation with the local health commission and the Disabled Persons' Federation is to cultivate talents.
On April 9, 2021, the online training of rehabilitation teachers (Ningxia Station) co-sponsored by Aier and Ningxia Rehabilitation Center for the Disabled and undertaken by ALSOLIFE was launched. Photo/Courtesy of respondents
The local government first set Ningxia Ning'an Hospital as the designated hospital of the project, trained the hospital through the expert resources that Aier can connect, and then let these "seed players" spread out, driving the improvement of the diagnostic level of the entire province.
Then, starting from April 9, 2021, Aier, together with the Ningxia Hui Autonomous Region Disabled Persons' Federation and the China Mayors Association, launched a three-month online training for rehabilitators in Ningxia.
The instructors of the training are industry experts invited by Aier, and the trainees are the front-line staff of rehabilitation institutions called for by the local disabled persons' federation. The pathology and causes of autism, the scientific intervention methods for different autism situations, and the discussion of ethics and physician literacy are the focus of the course. In three months, Aier and the Disabled Persons' Federation trained 364 rehabilitation engineers for Ningxia.
Liu Meng told China Philanthropist that what Aier is doing at present is to build a hub platform to become a bridge between high-quality medical resources and remote areas with needs.
The reason is very simple: there are not no good medical resources in China, but these are too concentrated in large cities such as Beijing, Shanghai and Guangzhou. If you can create a point-to-point or even radial network to ignite a spark in a relatively empty area, perhaps the autism treatment needs of many underdeveloped areas can get a certain degree of response.
"After our research, we found that the social undertaking mechanism is not enough." Zhang Bibo said. In fact, in the field of autism, the work to fill the gap relies on civil forces - well-known domestic autism public welfare organizations, such as "Xingxing Rain" that does special education, Yilin who does rehabilitation training, and ALSOLIFE, which programs to build an online diagnosis and treatment plan development platform, the founders are all parents of children with autism without exception. Those who experienced this pain became the first seeds, slowly holding up a shade.
"The development of autism in China is not driven by policies to pay attention to, but by the spontaneous behavior of the people, which in turn promotes the attention of the government." These parents themselves are exploring the rehabilitation of their children, and they have found their own set of models. Zhang Bibo told Chinese Philanthropist.
If the institution is the tree, then Aier wants to be the sower. Professor Ke Xiaoyan of Nanjing Brain Hospital once said, "I am very pleased to see that there is such a platform in China that can combine the resources of the field of autism, in this field, many people are carrying out charity relief work, but few people think from the perspective of professional training." I am very much looking forward to how many doctors can be trained by the Daystar Project and how many parents can master the skills of home intervention. ”
At present, Aier has set up a well-known chief expert team in China, including the Sixth Hospital of Peking University, the Third Affiliated Hospital of Sun Yat-sen University, Nanjing Brain Hospital and other hospitals, and in the future, it will train doctors in Ningxia, Inner Mongolia, Shaanxi, Gansu and other places, and work with the local health commission to promote the construction of local autism disciplines and talent training.
On September 7, 2018, in Yichang, Hubei Province, Chen Chuanbin and his autistic student Chen Ye walked on a mountain path. Photo/Visual China
Let the stars land safely
"Suppose the twins grow up and you are old, will the family have enough income when the time comes?" Are you worried that your child won't be able to integrate into society? ”
"I thought about it, but I didn't dare to think about it." In the face of the question of "China Philanthropist", Mr. Bai frankly said, "Because there are some problems that I can't solve." Personal ability is limited, at present, it is not possible to earn too much, follow-up is to consider that you can earn a little more. For the time being, it is not our turn to worry about their job search, so I hope that their lives can take care of themselves, even if we simply start a small business, we can actually live. We don't have to spend too much money, they can't get married and have children, they don't have to buy a house or a car. Let's just have a meal as a family, right? It also doesn't cost much money. ”
Education to employment, to middle age, until twilight, for Xing'er, is a more complex and difficult stage.
In 2017, the Ministry of Education and the China Disabled Persons' Federation promulgated the "Notice on Doing a Good Job in the Enrollment and Enrollment of Disabled Children and Adolescents in Compulsory Education", which stipulates that the enrollment of disabled children should be fully covered and zero refusals; in June 2020, the Ministry of Education once again issued the "Guiding Opinions on Strengthening the Work of Attending Classes in the Compulsory Education Stage of Disabled Children and Adolescents", proposing that a scientific enrollment assessment and identification mechanism should be established, the support resources for classes should be improved, and the "Pute integration" should be adhered to.
The message of the regulations is clear that children with disabilities, including autism, must attend school. However, the problem is that the standard of integrated education in the mainland has not been established for a long time.
This also makes many parents of ordinary children inevitably worry: will the enrollment of star children disturb other children? Even the hyperactive and unconscious violence of some children may threaten the safety of other children?
When Xing'er goes to a regular school, there are two key points that need to be determined: First, what kind of rehabilitation standards does he need to meet to enroll? Second, after he entered the school, did the class have a "shadow teacher" to care for and supervise him, and did he have other resources and a sound environmental support system?
In this regard, Aier once visited an institution that has been doing integrated education for 18 years. During the visit, they were invited to guess which child in the class was a star. "I really can't guess it, he (Xing'er) has been integrated into the class." Liu Meng said. But even in such an environment, the class is also equipped with a shadow teacher to record the daily recovery of the child, and can also stop the child's violence and other abnormal situations in time to calm the child's emotions.
Is it necessarily a more valuable path for Xing'er to enroll in ordinary public schools and eventually achieve "Pute Integration"? The answer given by the Daystar team is yes. "I think fusion is a double-edged sword." Liu Meng told China Philanthropist, "It challenges both sides, but it also offers possibilities for both sides." Especially for ordinary children, will they be able to understand these diseases more when they are exposed to the children? He may be more empathetic and more willing to help these children in need. I think that integration has a positive guiding effect on both special children and ordinary children. ”
At present, Aier is funding a group of star children to do rehabilitation with the Lanzhou Disabled Persons' Federation. Liu Meng said that when they recover to a certain condition, Daystar will consult with the local intentional fusion public kindergarten and send them there to go to school.
In 2018, Tao Siliang, president of Aier Charity Foundation, visited the Eighth Kindergarten in Hexi District, Yitong's integrated education base, for the first time and met the stars there. Photo/Courtesy of respondents
If integrated education can still find a grip, then the employment of Xing'er is really more difficult. Children with autism often have repetitive stereotypes, coupled with communication disorders and lack of interest, making it difficult to work effectively.
One attempt is to bring the children together and let them work in a relatively closed "small society." In Japan, there is a famous "beech town" (full name: social welfare corporation beech town), founded by Ms. Hatsue Suda, vice president of the Japan Autism Association, because it is located among a beech trees, so the organization is named "beech town". The town has multiple buildings, mostly four stories high, and each adult autistic person has his own single room.
Professor Jia Meixiang of the Sixth Academy of Peking University once visited there. She said that the autistic people there will start practicing life and labor skills from an early age, and the managers will assign different jobs according to their condition, such as some severe autistic people will do container assembly, in pairs, and cooperate with each other to use air guns to hit nails on wooden boxes.
"The most shocking thing about the visit was that I saw a patient who was about 50 years old, whose parents were no longer there, but he was able to survive there and live a very good quality life." Jia Meixiang said.
There is also such a "relict and independent" star town in China. It is located in Jinzhai County, Lu'an City, Anhui Province, and was spontaneously established by a group of star parents. According to reports, the town plans to accommodate up to 120 stars, where they can go to school, live, work and perhaps live a dignified life like ordinary people.
Is such a relatively closed community the best choice for them? Zhang Bibo told China Philanthropists, "As long as it can promote their employment, it is a very good attempt." ”
But she also mentioned that this pattern is often difficult to sustain. "There is an institution in China called 'Xi'er Car Wash', which gathers children with mental disorders and autism to train and let them wash cars in the store – which is also a positive use of stereotyped repetitive behavior. However, they can do it, but they are not efficient. So how to ensure the income of this car wash, after a long time, can the whole company still be maintained? ”
Zhang Bibo said that the most fundamental solution is still to rely on the state to provide policy support to such spontaneously established communities. "If such a community can be sustained with the support of the government, the children in it can live and work here all the time." Japan's beech country is supported by strong government support. ”
Among the children Aier came into contact with was a 25-year-old star child who was mildly ill. Caring people helped him contact a hospital, willing to accept him to do the work of file collation, with a monthly salary of 4,000 yuan, social security and medical insurance.
Liu Meng said that Daystar has been trying to contact institutions that are interested in providing jobs to help more stars. In addition, she also told The China Philanthropist that Aier has plans to provide elderly care and charitable trust services for autistic patients in the future, so that more stars can land safely.
"Exit" mechanism
In addition to the assistance and care around the stars, Aier is also keenly aware of the pain of the people around them.
Mr. Bai told China Philanthropist that he is engaged in the sales industry, and his annual income is unstable, up to about 100,000. The most basic rehabilitation cost per child per month is 4800 yuan. "Sometimes we have more money on hand, we let the institution give extra lessons, and on Saturdays and Sundays there will be individual teachers training one-on-one." Calculated, the annual rehabilitation cost of the two children is at least more than 100,000 yuan. Before the rent and basic living expenses are taken into account, the whole family is already unable to make ends meet, and can only rely on parents and relatives for help when they are nervous.
Mrs. Bai, who is responsible for caring for her children at home every day, had a tendency to depression before the epidemic began. When it develops to a serious extent, there is even the idea of taking a life.
"One day I came back from work and saw her on the balcony holding her child and crying so hard that she wanted to jump off the building." Mr. Bai recalled, "I quickly pulled her into the house. I said, you can't change this matter, the child is already in this situation, if we are gone, what will the child do? Some of the more miserable families, people are still insisting, since the stall, we can only grit our teeth to face. ”
In April 2021, Guo Yanqing, professor of peking university sixth hospital and special expert invited by the "Daystar Project", demonstrated and taught the special teachers of Ningxia Rehabilitation Center for the Disabled. Photo/Courtesy of respondents
The economic and mental pressure on a "double-star family" like Mr. Bai is unimaginable to others. Liu Meng also witnessed another sad moment of the "double-star family": at the venue of an autism event, two twin boys of 18 years old, taller than their father and stronger than their father, have been pinching their father's arm and crying because of anxiety.
"They don't realize they're hurting their families." Liu Meng said. In such a long and irregular, unresponsive and illogical routine, the father and the mother of the child also broke down many times, and the mother who spent a long time at home with the child was also diagnosed with depression.
Liu Meng told China Philanthropist that in the families of children with autism, the proportion of depression among parents is quite high. At present, Daystar is working with Tsinghua University to provide parents with "respite services" - institutional volunteers help take care of their children for a day, and parents can have free time to go out of the room one day, go to the movies, go shopping, and breathe fresh air. At the same time, Daystar also plans to provide more psychological intervention support for parents of Star Children.
"I feel like there's still a lot to be done in the autism space. We discuss every day what else we can do, and our power is actually very limited. Liu Meng said. The scope of care of Daystar is not limited to the patients themselves, but extends to include the people around them, and even everyone who may have contact with Xing'er, into the scope of care.
Tao Siliang, president of the Aier Public Welfare Foundation, once said: "Aier's purpose is to explore social difficulties and hot issues, when the government has not yet touched some areas, our social organizations should try first, and explore a set of effective solutions for the government to solve such problems in the future." At the same time, we also expect that the foundation's public welfare projects can eventually be 'withdrawn', which proves that the government has covered such special groups in all aspects." ”
This could also explain the role that the Daystar Project plays in the field of autism. "We're still doing the work of picking up the slack." Zhang Bibo told Chinese Philanthropists, "Public welfare can be tried first, explored and piloted, and found a model to solve problems, thus forming a replicable path." If our efforts are effective in a certain area, government agencies can simply replicate it, so that charitable organizations can become a promoter of social problems. ”
Since 2017, Aier has launched the "Sunflower Project - Rescue Project for Children with Cerebral Palsy", jointly with experts from the China-Japan Friendship Hospital and the Dongzhimen Hospital of Beijing University of Traditional Chinese Medicine, to visit Tibet and Kashgar in Xinjiang to carry out free medical screening for local children with cerebral palsy and to fund children in underdeveloped counties and cities for cerebral palsy surgery.
Before Aier's arrival, the diagnosis and treatment of cerebral palsy in some hospitals in Tibet and Xinjiang was completely blank. Through the intervention of the Sunflower Program, the local disciplines were basically established, the charging system was improved, and finally the local government included the diagnosis and treatment of cerebral palsy into the scope of financial security, and Aier was able to "withdraw".
"This is also the goal of our Daystar project," Zhang Bibo said, "and I hope that after the government finds a model, we can withdraw." ”
It is precisely because the problems of the whole life cycle of children with autism from treatment to rehabilitation to education, employment and living security are complex and difficult, daystar projects are more urgent to mention the importance of the participation of the whole society.
"Any institution is pale in the face of such a vast society." Zhang Bibo said. The number of autistic people worldwide is rising year by year, but the interpretation of the "demonization", "genius" and "romanticization" of autism has not yet been dissolved. Let the public scientific cognition of autism, for this group of more understanding and awe, is also a big thing that Aier wants to do.
At present, Aier Public Welfare Foundation, together with one fund and ByteDance, has launched the "Love Star Partnership Program" on Douyin, opening up popular science topics for autistic groups, and inviting medical experts and autistic families to speak out. At present, the main popular science content of Douyin includes explanation of the causes of autism, key points of home intervention, self-care and social integration of children's lives, etc., and a total of 150 million people have participated in the topic before and after.
Chinese Philanthropists 2021 Annual Public Welfare Project
Daystar Project
Jointly initiated by Beijing Aier Charity Foundation, Peking University Sixth Hospital and The Female Mayors Branch of the China Mayors Association, the project was officially established in April 2019. The project assistance group is for children with autism and their families, with the trinity model of "screening diagnosis, rehabilitation treatment, and integrated education" to promote the discipline construction of the field of autism in China.
Reasons for selection
The domestic autism cause has not yet reached the dawn, and the name "Qiming" is a resolute determination. In a rational and gentle way, starting from industry construction and resource allocation, the Daystar Project has built a platform that gathers the strength of all parties, and tries to solve the structural problems that run through the life of "Xing'er" with the attitude of a pioneer. Although it is difficult to "pick stars", there are still people who dare to try and give the stars the protection of love.
Photo editor: Zhang Xu
Duty Editor: Wan Xiaojun