Speaking of the original intention of setting up "Stars Home", Cao Fang's reason is simple: "Let my son have a place to go".
Cao Fang is from Fuzhou City, Fujian Province, and is the mother of a child with autism.
In 2000, she gave birth to her son Xiong Da (note: nickname), after which he was diagnosed with severe autism.
Autism, also known as autism spectrum disorder, usually starts before the age of 3 and is a series of complex neurodevelopmental disorders. The way the patient’s brain processes information is different from that of ordinary people. There are certain social and language communication barriers and repetitive stereotypes. .
The process of taking care of Xiong Da's growth is undoubtedly difficult. Cao Fang didn't know anything at first, and later learned the content of autism education intervention step by step.
During his childhood, Xiong Da spent many years in schools, intervention agencies and hospitals.
Cao Fang discovered that there is no institution that can fully recover her child, and no institution can be a lifelong trust for children with autism.
The more realistic problem is that the teenage Xiongda has nowhere to go.
Data from a number of authoritative research institutions on autism show that there are more than 10 million autistic patients in China.
At present, early intervention agencies for children with autism have become more and more mature, but intervention does not mean cure.
When these children grow up, especially the care and care of adult autistic patients, it is placed in front of the parents of patients such as Cao Fang.
Cao Fang said that most of the older autistic patients she visited were "housed in captivity."
How should these older autistic patients over the age of 16 survive and live with dignity in society?
"Others don't need to do it. As a parent, I can't hide." Cao Fang said.
In 2017, Cao Fang, who has experience in rehabilitation institutions for children with autism, founded the "Fangxingjiayuan" in Fuzhou to accept older autistic patients over 16 years old and specialize in their rehabilitation and employment support services.
The 17-year-old Xiong Da became the first batch of students of the institution.
After more than three years of attempts, Cao Fang has found some experience, and the children have greater freedom in the countryside.
But Cao Fang said that without the help of more social and government resources, and relying only on the group of parents, the "Star Home" is still struggling.
She called for more people to understand and help this group.
After the child grows up, he faces the predicament of no institution to accept
When many children of the same age have begun to learn to speak, Xiong Da is still unable to express clearly.
Neighbors in the community once said to Xiong Da's grandmother: "Your child has a problem."
The family was very angry when he heard it for the first time: "My child's father is a graduate student, and he didn't speak until late, so how come my child has problems!"
Cao Fang said that Xiong Da is indeed different from other children and has very unique hobbies.
When he saw the wheel of a car, he would immediately stare at the wheel, his small body also rotated in the direction of the wheel, and finally the whole person "boomed" and hit the ground.
He likes to watch the opening of "News Network".
Whenever seven o'clock in the evening, he always quietly and obediently guards in front of the TV, carefully observing the fixed opening picture, and listening to the fixed opening background music.
Except for observing the wheels of cars and watching the opening of "News Network", at other times, Xiong has difficulty calming down, "like a spinning top all day", and he will move around even when he has a bowel movement.
Cao Fang said that they felt that their son was indeed different from other children.
She took her son to visit many local doctors in Fuzhou.
When his son was nearly two years old, he was diagnosed with severe autism.
According to the "Guidelines for the Diagnosis, Treatment and Rehabilitation of Childhood Autism" (hereinafter referred to as "Guidelines"), children with autism have three core symptoms, including narrow interests and stereotyped repetitive behaviors.
The performance of Cao Fang's son is consistent with the "repetition of behavior."
The "Guide" pointed out that "Children are usually not interested in things that normal children are interested in, such as toys and cartoons, but are obsessed with watching TV commercials, weather forecasts, rotating objects, arranging objects, or listening to a certain piece of music, some kind of monotonous repetition. The voices of others".
After the diagnosis of autism, Xiong Da's peculiar behavior found an explanation.
In 2003, Cao Fang began to find a suitable rehabilitation facility for his son.
At that time, there were very few rehabilitation institutions in Fuzhou. Cao Fang finally found the Fujian Rehabilitation Center for the Disabled. After many setbacks, he obtained the qualification to enter the rehabilitation center for intervention treatment for his son.
Cao Fang was very dissatisfied with the three characters "disabled" in the name of the center. "My son has good hands and feet, how can he be a "disabled"?"
At the same time, Cao Fang insisted on sending her son to kindergarten.
Since it is difficult for autistic children to meet the kindergarten enrollment standards, Cao Fang contributed money to help her son enter the kindergarten.
Cao Fang said, however, on the first day of kindergarten, Xiong Da jumped up and down, jumped on the piano for a while, and overturned other children's toy blocks.
Sometimes, he would bump into the teacher who was in class, and the teacher could only stop the lecture.
In the end, Xiong Da only stayed in the kindergarten for a day before he had to leave.
"At that time, the first idea was wrong. I always wanted to cure the child completely and become a normal person." Cao Fang said when recalling the initial experience of taking his son to see a doctor.
Since his son was about two years old, Cao Fang took his son to Beijing, Shanghai, Guangzhou and other rehabilitation institutions across the country.
But no institution can accept Xiongda for a long time.
Cao Fang said that before the age of 6, she can barely put her son in a rehabilitation center for children with autism; from 6 to 16 years old, he can go to Peizhi Special Education School or sent to other institutions; but after the age of 16, she can barely put him in a rehabilitation center for children with autism. There is basically nowhere to go, because few suitable institutions are willing to accept older autistic patients.
Self-run institutions to explore the way out for older autistic patients
According to survey data from the Wucailu Autism Research Institute, as of 2019, there are about 10 million people with autism spectrum disorders in China.
There are also countless families of older autistic patients who face the dilemma of nowhere to raise their children when they grow up.
In 2010, Cao Fang went to Hong Kong to study and train with the company due to work reasons.
It was this experience that made Cao Fang pay attention to an autism education foundation.
At first, she contacted the foundation through Sina Weibo and learned about a series of more professional models.
She hopes that her children "have a place to go", but also suffers from the lack of similar institutions nearby.
After studying for a period of time, in 2013, she herself opened a children's rehabilitation center in Fuzhou.
Cao Fang said that during the operation, he learned that even if the parents have the will, many similar institutions will not offer courses for older autistic patients because it is difficult to maintain and make profits.
In 2016, when Xiong Da was 16 years old, Cao Fang began to face the dilemma that his son had nowhere to go.
Later, she decided to set up the "Xingxingjiayuan", a rehabilitation and employment support service place for older autistic children based on the Children's Rehabilitation Center, located in Jingxia Village, Baisha Town, Minhou County, Fuzhou City.
"Fangxing Home" tried "farm therapy".
The teachers and nurses here will take the older autistic patients here to the surrounding farms, digging sweet bamboo shoots, digging potatoes, planting melon fields, picking grapefruits and so on.
The Paper has noticed that after the house in front of the "Flat Star Home", they reclaimed a few vegetable plots, all of which are the result of the work of the older children here.
Uncle Cao, the head of the site of "Flat Star Home", said that when he was in the city, the children were crowded in a room of less than 200 square meters in the rehabilitation center. Everyone was very depressed and there were few opportunities to take the children out.
Cao Fang believes that in cities, in addition to affecting others, autistic patients themselves will also be affected.
Urban reinforced concrete will make children with autism more likely to be anxious.
In Cao Fang's view, farm therapy is showing its unique healing power day by day.
When an older child from Fangxingjiayuan was still in downtown Fuzhou, according to the agency's request, he could only leave at 4pm.
There is little time for free activities, and in a closed space, he is prone to inner anxiety, and his behavior is to tear his clothes.
But after arriving in a village with fresh air and close to nature, "it's like a different person."
Cao Fang said that after coming to the "Flat Star Home", the child "never tore any clothes."
The same change also includes Xiongda. In the daily trekking activities in the mountains, the two hundred catties Xiongda is like a gentle bear, obediently following the team, changing the past "need to be locked in iron cages" everywhere. The state of madness.
Cao Fang said that some other older children who can't eat have also learned to eat, and those who can't go down the steps have also learned to go down the steps.
For ordinary people, this is a simple matter, but being able to do well in basic life skills is a great improvement for autistic patients.
Self-run organization has many problems, seek government social help and support
For Cao Fang, looking at her son's changes, she felt relieved in her heart.
However, the operation of "Zhongxingjiayuan" is also a problem for her alone.
"Fangxing Home" only targets mentally handicapped patients near the village, and its target objects are mostly from poor families, single-parent families or families with multiple disabilities.
Cao Fang charges each patient a monthly fee of 3,500 to 5,000 yuan, and tries every means to obtain relevant subsidies for the patients.
However, the funds of the institution itself are not sufficient. The operation of "Fangxing Home", "Fangxing Station" and "Fangxing Farm" has basically exhausted the funds, and even needs to be posted inward.
Currently, there are 21 patients under the care of the "Flat Star Home", and only 7 team members who have worked with Cao Fang for many years are on the job.
The problems that Cao Fang faced across the country were not alone.
The Shanghai Angel Soul Salon is a public welfare organization that cares for people with autism. Its founder, Cao Xiaoxia, said in an interview with The Paper that the current organization is also facing funding, venue and policy issues.
The institution currently offers courses for people with autism, such as music, language, painting, and dance. Since the venue is borrowed, it can only be opened for half a day at a time, and the number of people that can be accepted is limited.
In addition, on the funding level, teachers’ salaries and musical instruments used in classes need to be guaranteed. This is not a problem that can be solved by raising funds for a long time.
During the two sessions last year, Liu Xiaobing, representative of the National People’s Congress and dean of the School of Public Economics and Management of Shanghai University of Finance and Economics, said that adult autistic groups aged 16 and above face more difficulties as they grow older: “If it’s harder to get the public’s understanding , The family’s economic pressure is greater and the policy is more inapplicable. Among them, the most prominent problem is that adult autistic patients can no longer receive compulsory education, and there are currently no targeted nursing institutions, resulting in adult autistic patients The pressure of family care is huge. The establishment of nursing institutions for adults with autism is an effective means to solve the above-mentioned dilemma, and it is also an important task for the development of the cause of the disabled."
The situation of institutions that can accept older autistic patients is not optimistic.
Some institutions adopt the community model, which has high requirements for patients, and patients with more severe autism generally cannot be accepted in the community; some institutions adopt the real estate model, which requires them to pay several hundred thousand yuan for each patient. , The high cost discourages many people, and it is relatively difficult to operate.
Li Jingjie, communications director of Beijing Xiaogeng Disability Foundation, has nearly 11 years of work experience in autism intervention.
In an interview with The Paper, she said that because there is no corresponding policy support, private institutions are unwilling to carry out corresponding courses. At present, there are very few institutions in China that can accept older autistic patients. The number is clear".
"Some cities have limited economic capacity, and many places do not have day care centers for older autistic patients." Li Jingjie said that the nationwide assistance work for autistic groups is gradually being explored. For example, some places are trying to promote community development. The mentally handicapped service center expands its scope to enable it to support higher-intensity mentally handicapped patients for community integration; some places are also exploring cooperation between social organizations and the government and the Disabled Persons’ Federation to increase the openness of existing day care centers to accept them More people with autism.
Cao Fang mentioned that there was a 14-year-old child with autism. The family took him thousands of miles from Henan to Fujian and came to the "Home of the Stars" for help.
It can be seen that there are not many institutions and bases nationwide that have suitable conditions to accommodate older children with autism and suitable for ordinary families.
Cao Fang also noticed that, especially among older women with autism, they are facing more difficult dilemmas.
The problems faced by female patients during pregnancy and the inheritance of diseases and child rearing after pregnancy are issues that have received little attention at present.
Cao Fang said that next she intends to raise funds to start the second phase of the "Flat Star Home" near Xiajing Village, to receive more autistic patients nearby, and to provide more care for the more difficult female groups among the patients.
The Paper, senior reporter Wang Xuanhui and intern Huang Dongqing