"We don't expect him to be able to marry and have children like a normal person, and go through his life, the most worrying thing is that one day we can't take care of him, or even after leaving this world, what will he do?" Who wants to take care of him in our place? ”
For now, autism remains incurable. Because some elderly patients have exceeded the "golden age" of rehabilitation training, they cannot integrate into society by their own ability, their parents are aging, and the family economy can no longer invest, and the care of this group has become a problem
Exploring the construction of community care, auxiliary employment, public care institutions and other "support" will help autistic groups to complete the whole life with dignity
Xinhua Daily Telegraph reporters Li Xiaoya and Wu Si
Children with autism have a beautiful name – "children of the stars".
As the state continues to increase its efforts to help children with autism before the age of 6, the "children of the stars" are increasingly entering the public eye. Timely rehabilitation training has brought them closer to society, but older autistics, especially adult autistic groups, still lack social attention. Since some elderly patients have exceeded the "golden age" of rehabilitation training and cannot integrate into society by their own ability, how to place their parents in old age and disability has become an urgent topic of attention.
We're gone, dolls
Li Min (pseudonym), a 65-year-old retired teacher in Guiyang, still remembers a message sent to him by his son five years ago: "Dad, I am not schizophrenic, I searched online, I am autistic." ”
In 1989, Li Min's son was born. Looking back, my son has a lot of differences from ordinary people, but everyone didn't care, thinking that it would be good to grow up.
A photograph of Li Min's son when he was a child. Courtesy of respondents
What really caught Li Min's attention was that when his son was going to junior high school, he and his friends went out with their children to play, "That day he was particularly abnormal, saying that people ignored him and kept crying, and my friend quietly advised me to take the child to the hospital psychiatric department for examination."
Since then, Li Min and his son have begun to travel to guiyang, Beijing and other hospitals. At that time, many doctors in China had not heard of autism, and almost all suspected that the child was a mental problem, and prescribed drugs for the treatment of schizophrenia and depression. Later, his son's words and deeds became more and more abnormal, and he could not communicate with people, "We say that he talks about east and west, and normal people are not on the same channel."
After graduating from junior high school, my son stayed at home and stopped going to school. Once, he ran with a dollar on his body near Guiyang Airport and slept all night on a bench at a gas station; another time, he ran out alone and didn't come home all night. In 2010, he was beaten outside, and since then, he has been closed, never opened the curtains, and his daily life is computer, stereo, tv, so that at home is nine years. To Li Min's surprise, his son was very slippery when he used computers, mobile phones, and smart TVs, and he didn't seem to be out of touch with society, knowing what was happening in the outside world.
"One day in 2017, he sent me a QQ message saying ' Dad, I'm autistic.'" Li Min, who was very surprised, compared the online autism symptoms with his son's behavior, it was indeed very similar, "He has a language barrier, his behavior is very rigid, such as sleeping on the half side of the bed must be placed on his things, we move a position and he puts it back."
Experts have confirmed that Li Min's son belongs to high-functioning autism, although he has the ability to learn, but because of the delay in the golden recovery period of his childhood, his ability to integrate into society is very poor. The son who always thought he was schizophrenic, successfully self-diagnosed at the age of 28, which made Li Min not know whether to cry or laugh.
"His condition was mixed and bad, he went out with sunglasses when he was good, and he didn't even want to see me and his mother when he was sick." Li Min said, "He seems to live in his own world, he doesn't understand social rules at all, the neighbors decorate normally during the day, he calls the complainants, and at night he puts the stereo very loud, and the lawyer who lives downstairs wants to fight with me." ”
Li Min and his wife are getting worse and worse, and in recent years, they have had many surgeries and hospitalizations, and they feel unable to take care of their son, who is 1 meter 84 meters tall and weighs more than 200 pounds. Li Min sighed and said: "We don't expect him to be able to marry and have children like a normal person, and go through his life, what is most worrying about is that one day we can't take care of him, or even after he leaves this world, what will he do?" Who wants to take care of him in our place? ”
One day counts as one day
Li Min's concerns are not unique.
For now, autism remains incurable. Because some elderly patients have exceeded the "golden age" of rehabilitation training, they cannot integrate into society by their own ability, their parents are aging, and the family economy can no longer invest, and the care of this group has become a problem.
According to Xu Chunlai, deputy director of the Rehabilitation Department of the Guizhou Provincial Disabled Persons' Federation, in Guizhou, elderly autistic patients are mainly cared for by families; those who have no ability to work and guardians must rely on relatives and friends to take care of them. In recent years, some places have explored the development of day care services for adult autistic patients, also based on the presence of guardians.
Guiyang Huiling students are learning hand-tie dyeing. Courtesy of respondents
On the eve of this year's "World Autism Day", some media reported the story of a father and son with autism in Beijing, which attracted widespread attention: after the death of the father, the 23-year-old son was placed in a private nursing home, living for ten years. This nursing home is not specifically for autistic patients, and it is accepted for the elderly, physically disabled, intellectually disabled and other objects. Many people are reluctant to stay unless they have to.
"People with autism have sound limbs and a healthy appearance, and many of them can participate in social life, but they can't walk alone. Judging from the characteristics of their diseases, welfare homes, nursing homes and even psychiatric hospitals are not suitable for them to be placed. When their parents are old and incapacitated and die, who will take care of them on their final journey? Zhao Xinling, vice chairman of the China Association for the Mentally Disabled and Relatives and Friends (hereinafter referred to as the "China Fine Association") and head of the Guiyang Loving Home Children's Training Center, said. She is also the mother of an older autistic patient.
Many older families with autism are already considering and trying to solve the problem of "entrustment" of their children. In 2017, some parents of autistic patients in Beijing, Shanghai and other places launched the "Star Town" project in Jinzhai County, Anhui Province. With the support of local governments, invested by parents, it is built in accordance with the "double support" model of parental pension and adult autism care.
"For high-income families, they still have to live and work in various places, and 'Star Town' does not meet their actual needs, which can only be regarded as a way back." Wen Hong, chairman of the China Fine Arts Association, said.
In 2016, watching her children grow up day by day, Zhao Xinling consulted with Huang Xi, who was also anxious, and established the Elderly Department of The Loving Home - Guiyang Huiling Social Work Service Center. As the first community home care service institution in Guizhou Province (different from centralized closed care), it provides community home care, day care, art conditioning, and assisted employment services for people with mental disabilities aged 14 to 59. The reporter saw in the center that the 3rd to 7th floors of this resettlement house are equipped with auxiliary employment parks, day care, rehabilitation and sports rooms, etc., with a total of 56 trainees from all over Guizhou, the oldest of which is 45 years old.
An elderly child with autism who receives day care services in Huiling, Guiyang. Xinhua Daily Telegraph reporter Li Xiaoya took a photo
The vast majority of autistic families are financially difficult, and the tuition fee of one or two thousand yuan a month has reached the limit of affordability. Although the local government has also given some funding in recent years, it is far from being able to maintain the basic operation of the institution. "In the past six years, the center has lost money year after year, and has lost 580,000 yuan, and the teachers are tired and have low incomes." Huang Xi often came up with the idea of closing it, "Parents all hope to do it, but we are all ordinary people, if my child is not autistic, I can't stick to it at all, and now I can count a day." ”
Huang Xi's daughter is learning to stir-fry. Courtesy of respondents
Looking forward to the establishment of a full life cycle support system
Since 1982, when autism cases entered the field of vision of the Chinese people, the autism service industry has gone through 40 years. For 40 years, parents have been the caregivers of their children and the bearers of stress, and their spirits and psychology have undergone severe tests.
"Despair has caused some parents to fall, some families to disintegrate, and some parents to rise up. They embarked on the road of self-help and mutual assistance, hugged the group to warm up, advocated society, and set up private rehabilitation institutions. "Nearly half of the private institutions for autism in the mainland are founded by parents, especially the mothers of autistic patients, but the services are still in their infancy, especially the serious lack of adult service projects." Wen Hong believes that there are also successful experiences overseas that can be learned from, "establish a supportive environment, guide the whole society to move closer to autistic children, and establish a full-life cycle support system."
In the view of Li Min and others, the "hometown of beech" is a pension model that conforms to the elderly autistic families. "Beech Town" is a japanese autism patient lifelong care institution, enjoying government subsidies, older autistic patients can complete simple handmade works with the help of staff, self-support, with the money from the sale of works to pay for the elderly.
Guiyang Huiling, located in a resettlement house in Nanming District, Guiyang City. Xinhua Daily Telegraph reporter Li Xiaoya took a photo
Guiyang Huiling has made similar attempts. The reporter saw that many handmade works of elderly autistic patients were displayed in the exhibition room. "Volunteers from Guiyang Qiyu Workshop have come to Huiling for free classes every Tuesday afternoon since 2020, and they and their friends have used their respective strengths to sell and publicize the 'Heart Youth' handmade online and offline at the same time, so that more people can understand the group of 'Heart Youth'." Huang Xi said.
"Along the coast, some elderly autism services can provide 24-hour care and accompany autistic people through their final journeys. That's exactly what we're trying to do. Huang Xi said, "Private institutions are an important supplement to serving autistic groups, especially non-profit private institutions, and it is recommended that the government increase support by means of private office assistance." ”
In Zhao Xinling's view, the community support system for autistic patients needs to be established and improved. "My son is in his 20s, playing cards downstairs, fitness, he does not participate, just stand by and watch, walking around in the community is also very comfortable, he does not need to leave the original family living environment, as long as the community has a place to take care of the day, community workers, volunteers come to the door every day to care about it, he can completely live in the community."
"It is recommended to integrate resources and explore the construction of community care, auxiliary employment, public care institutions, etc. to 'support the bottom' to help autistic groups complete the whole life with dignity." Xu Chun said.