Who do older autistic patients "entrust" to after their parents leave?
These "children of the stars" cannot integrate into society by virtue of their own abilities, and a full life cycle support system needs to be established urgently
Our reporters Li Jingya and Wu Si
Autistic children have a beautiful name - "Children of the Stars".
As the country continues to increase its assistance to children with autism before the age of 6, "children of the stars" are increasingly entering the public eye.
Timely rehabilitation training has shortened their distance from society, but older autism, especially the adult autism group, still lacks social attention.
Since some elderly patients have exceeded the "golden age" of receiving rehabilitation training and cannot integrate into society by their own abilities, when their parents are old and disabled, how to arrange them has become a topic that needs urgent attention.
we're gone, what about the doll
Li Min (pseudonym), a 65-year-old retired teacher in Guiyang, still remembers the message his son sent him five years ago: "Dad, I'm not schizophrenic, I searched online, I'm autistic."
In 1989, Li Min's son was born.
In retrospect, my son has many things that are different from ordinary people, but everyone doesn't care about it, thinking that it will be fine when he grows up.
What really caught Li Min's attention was that when his son was going to junior high school, he and his friend took the child out to play, "He was very abnormal that day, saying that people ignored him and kept crying. My friend quietly persuaded me to take the child to the psychiatry department of the hospital. check".
From then on, Li Min and his son began to travel to hospitals in Guiyang, Beijing and other places.
At that time, many doctors in China had never heard of autism, and almost all suspected that the child had a mental problem, and prescribed medicine for schizophrenia and depression.
Later, my son's words and deeds became more and more abnormal, and he couldn't communicate with people. "We talk about things and he talks about things, and he is not on the same channel as normal people."
After graduating from junior high school, my son stayed at home and stopped going to school.
Once, he ran to the vicinity of Guiyang Airport with a dollar on his body, and slept on the bench at the gas station all night; another time, he ran out alone and didn't come home all night.
In 2010, he was beaten outside. Since then, he started to stay behind closed doors and never opened the curtains. His daily life consisted of computers, stereos, and TVs, and he was closed at home for nine years.
To Li Min's surprise, his son is very slippery when using computers, mobile phones, and smart TVs. He doesn't seem to be out of touch with society, and he knows what's going on in the outside world.
"One day in 2017, he sent me a QQ message saying, 'Dad, I am autistic'." Li Min, who was very surprised, compared the symptoms of autism on the Internet with his son's behavior, and it was really similar, "He has language barriers. , the behavior is very stereotyped, for example, his things must be placed on the half of the bed, and he will put it back when we move to another position.
Experts have confirmed that Li Min's son has high-functioning autism. Although he has the ability to learn, his ability to integrate into society is poor because he has delayed the golden recovery period of his childhood.
I always thought it was a schizophrenic son. At the age of 28, the self-diagnosis was successful, which made Li Min not know whether to cry or laugh.
"His condition is good and bad. When it's good, he wears sunglasses to go out. When he's sick, he doesn't even want to see his mother and I." Li Min said, "He seems to be living in his own world and doesn't understand the rules of society at all. The neighbor was decorating normally during the day, he called to complain, and at night he turned on the stereo loudly, and the lawyer living downstairs wanted to sue me."
Li Min and his wife's health are getting worse and worse. In recent years, they have had multiple surgeries and hospitalizations. They feel powerless to take care of their son, who is 1.84 meters tall and weighs more than 200 kilograms.
Li Min said with emotion: "We don't expect him to marry a wife, have children, and spend his life like a normal person. What we are most worried about is that one day we can't take care of him, and even after he leaves this world, what will he do? Who is willing to take care of us? he?"
Can last a day
Li Min's concern is not an exception.
Currently, there is still no cure for autism.
Because some elderly patients have exceeded the "golden age" for rehabilitation training, they cannot integrate into society by their own abilities, their parents are aging, and their families are unable to invest any more. The care of this group has become a difficult problem.
According to Xu Chunlai, deputy director of the Rehabilitation Department of the Guizhou Disabled Persons' Federation, in Guizhou, older autistic patients are mainly cared for by their families; those without the 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 adults with autism, also based on the situation of guardians.
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 his father, his 23-year-old son was placed in a private nursing home for ten years.
This nursing home is not specially set up for autistic patients, and accepts all kinds of objects such as the lonely elderly, the physically handicapped, and the mentally handicapped.
Many people are reluctant to stay unless they have to.
"Autistic patients have sound limbs and healthy appearance. Many of them can participate in social life, but they cannot walk alone. Judging from the characteristics of their disease, welfare homes, nursing homes and even mental hospitals are not suitable for them. When their parents are young After they become disabled and pass away, who will take care of them after their final journey of life?" said Zhao Xinling, vice chairman of the China Association for the Mental Disabled and Relatives and Friends (hereinafter referred to as the "China Spiritual Association") and head of the Guiyang Love Home Children's Training Center.
She is also the mother of an elderly autistic patient.
Many older autistic families are already considering and trying to solve the "trust" problem 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 the local government, it is invested by parents and constructed in accordance with the "dual care" model of parental care and adult autism care.
"For high-income families, they still have to live and work in various places. The 'star town' does not meet their actual needs. This can only be regarded as a way back." said Wen Hong, chairman of the China Fine Arts Association.
In 2016, seeing the children grow up day by day, Zhao Xinling discussed with Huang Xi, who was also anxious, and established the Care Home for the Elderly - Guiyang Huiling Social Work Service Center.
As the first community home care service organization (different from centralized closed care) in Guizhou Province, it provides community home care, day care, art conditioning, assisted employment and other services for people with mental disabilities aged 14 to 59.
The reporter saw in the center that there are auxiliary employment parks, day care, rehabilitation exercise rooms, etc. on the 3rd to 7th floors of this resettlement house. There are 56 trainees from all over Guizhou, the oldest is 45 years old.
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.
Although the local government has also given certain funds in recent years, it is far from being able to maintain the basic operation of the institution.
"In the past 6 years, the center has been losing money year after year, with a loss of 580,000 yuan. The teachers are tired and have low income." Huang Xi often thinks of quitting, "Parents all hope to continue, but we are all ordinary people. , If my child is not autistic, I can't hold on at all, and now I can last a day."
Looking forward to establishing a full life cycle support system
Since autism cases entered the Chinese people's field of vision in 1982, the autism service business has gone through 40 years.
For 40 years, parents have been the caregivers of their children and the bearers of pressure, and have undergone severe mental and psychological tests.
"Despair made some parents fall, some families disintegrated, and some parents rose up. They embarked on the road of self-help and mutual assistance, formed a group to warm up, advocated the society, and established private rehabilitation institutions." Wen Hong said, "Our country Nearly half of the autism private institutions are founded by parents, especially the mothers of autistic patients, but the services are still in the initial stage, especially the adult service projects are seriously lacking." Wen Hong believes that there are also successful overseas experiences that can be used for reference, "establishing support Sexual environment, guide the whole society to move closer to autistic children, and establish a support system for the whole life cycle.”
In the view of Li Min and others, the "Hometown of Beech" is a pension model suitable for older autistic families.
"Keyaki Village" is a life-long nursing institution for autistic patients in Japan. It enjoys government subsidies. Older autistic patients can complete simple handicrafts with the help of staff, support themselves, and use the money from the sales of works to pay for their retirement expenses.
Guiyang Huiling also made a similar attempt.
The reporter saw that many handmade works of elderly autistic patients were displayed in the exhibition room.
"Volunteers from Qiyu Workshop in Guiyang City will come to Huiling for free classes every Tuesday afternoon since 2020. They and their friends use their respective strengths to carry out sales and promotion of 'Mind Youth' handmade online and offline at the same time. Let more people know about the 'heart youth' group." Huang Xi said.
"In coastal areas, some older autism service agencies can provide 24-hour care services and accompany autistic patients through the final journey of their lives. This is exactly what we are trying to do." Huang Xi said, "Private agencies are very helpful in serving loneliness. Symptom groups are important supplements, especially non-profit private institutions, and it is recommended that the government take measures such as private office assistance to increase support."
In Zhao Xinling's view, the community support system for autistic patients needs to be established and perfected.
"My son is in his 20s, playing cards and exercising downstairs. He doesn't participate, so he just stands and watches. It's very comfortable to walk around in the community. He doesn't need to leave the original family living environment, as long as there is a day in the community. In the place of care, community workers and volunteers come to take care of him every day, and he can live in the community completely.”
"It is recommended to integrate resources, explore the construction of community care, auxiliary employment, public care institutions, etc. to 'support the foundation' and help autistic people go through the whole process of life with dignity." Xu Chun said.