"I have only one wish now, that is to let me live longer than my children, one year will do."
When saying this, Wen Rong and Zhao Ting, who were over fifty, wiped their eyes almost at the same time.
His mother was crying, but Xiaoyu couldn't speak. In a hurry, he could only slap his thighs with both hands vigorously.
The voice of "pop--pop--" echoed in the empty corridor, and Xiaoyu's palm quickly became red.
This is a family of older autistic patients.
23-year-old Xiaoyu was diagnosed with autism when he was two years old. After years of toss and turns in schools, institutions, and hospitals, he was eventually taken with him by his father Zhao Ting, who runs a small foreign trade company. In the pantry outside the office, a green chair and a transparent round table are his place.
Children with autism will not always be children, and their parents will not be young forever.
When the former children with autism grow into adulthood in the midst of stumbling and stumbling, even if there are no other diseases, it is difficult for them to connect with society smoothly by their own strength. At the same time, their parents are gradually getting old... these The problem is like a huge boulder in the void on the chest of the parents, which brings the suffocation that these special families can hardly escape.
"My child has nowhere to go"
At the age of 20, Zhang Hao started a brand-new life in an "Adulan Workshop" in Hedong District, Tianjin, which was renovated from a factory building.
When there is no class, he sits in the office and writes some numbers that no one can understand on the printing paper, occasionally making a few vague murmurs in his throat. His mother is Wu Guixiang, the founder of this workshop, sitting The opposite of him, looked at him tenderly.
When there are classes, he studies in other classrooms.
Sing, bake, and learn daily etiquette with other children with autism.
He is 1.8 meters tall, his complexion is pale, and his eyes are bright.
If it weren't for the delay in hearing when talking to him, it would be hard to believe that this handsome boy has been suffering from autism for many years.
Autism, also known as autism, is more likely to be called "professional development disorder" in the professional field. It is a kind of developmental disorder, and most patients are accompanied by intellectual and social disorders.
According to data released by the Wucailu Autism Research Institute, as of 2019, there are currently more than 10 million people with autism spectrum disorders in China.
Zhang Hao is the first student of Adulan Academy.
In 2016, for the first time enrolling students here, 8 patients who were over 18 years old and mentally disabled like Zhang Hao were admitted.
Public education schools and private health care institutions believe that they are beyond the age of education, and their own level of ability is unable to integrate into society normally.
Going around, finally settled down here.
For Wu Guixiang, the reason for establishing this workshop is simple-"My child has nowhere to go." If the health care institution does not accept it, Zhang Hao can only be kept at home.
For autistic patients, long-term isolation will gradually degrade the living habits and self-care ability once trained, and in severe cases, it may lead to bipolar disorder.
"Speaking of which, many people don't believe it, just the action of hanging a used towel back to the hook. I taught it for more than 10 years and finally learned it. After staying at home for two months, he forgot it again." Wu Guixiang said.
Zhang Hao's experience is not alone.
Three years after Wu Guixiang founded Adulan, 51-year-old Liu Shuo, the father of Liu Ming, a young man with autism, joined the parents of 10 older autistic patients who he met at Peizhi School. He is located in Beichen District, Tianjin City. In Mi’s home, a family-style mutual aid classroom has also been built. Two or three parents take turns on duty to help those autistic patients who have reached the age of employment but who are insufficient or have no unit to receive ability training. The expenses are shared equally by the parents.
A row of blurry photos were pasted on the pale blue wall, recording the appearance of these distant stars.
Accidental and dazed
Liu Ming's sudden aphasia made Liu Shuo unexpected.
Before the age of two and a half, Liu Ming had always been a smart and lively child, and his growth trajectory was no different from that of a normal child.
Later, Liu Ming's symptoms gradually emerged and he was diagnosed with debilitating autism.
Many children with autism have delayed language development and resisted communication when they were born. Compared with their parents, Liu Shuo's destiny hit Liu Shuo later, but he was caught off guard.
The child who could talk and laugh before was speechless overnight.
"It's like a network failure while playing a game. The villain in the computer loses contact with the outside world. He is stuck there and can't move or get out."
From the time his son was diagnosed with autism, Liu Shuo's emotions were like a roller coaster ride.
After a long period of no time, he accepted the reality and began to take his son for ability training.
At that time, he was young, and in order to take care of his son, he threw aside his business with endless passion.
The son was afraid of childbirth and did not want to see the teacher, so he recorded videos by himself. From trivial matters in life to communication etiquette, more than 100 episodes were stored in the computer for his son to watch.
I accompany my son to listen to music, teach him to draw and read to him... Liu Shuo hopes that his son "can perceive some spiritual things."
Liu Shuo's education for his son was successful.
In the group of autistic patients, Liu Ming is definitely a "top student".
He is emotionally stable, can do crafts, paint, and play the piano.
When a stranger communicates with him, it can also be expressed in simple words.
Even so, Liu Shuo still felt that it was not enough.
He hopes that he can beat time and Liu Ming can survive when his life comes to an end.
For this reason, he initiated a mutual aid classroom. Even if he can't win the time, 11 parents who have the same illness can share and take care of each other in the long future.
"After the parents are gone, live." What sounds simple, for parents of autistic patients, may be an unsolvable problem in this life.
In the more than 20 years of his son's illness, worries about physical illness and aging have grown crazily in Wu Guixiang's heart with Zhang Hao's heading and jointing height.
On how to educate these young people with autism so that they can continue their lives without the care of their parents.
So far, no one has been able to find the answer.
The "Blue Book of the Needs of Chinese Autistic Families" published in 2016 shows that the employment rate of Chinese adults with autism is less than 10%.
"What to do after graduating from school is very difficult. Few people are willing to recruit an autistic patient, even if his ability is okay." Wu Guixiang said.
This is not a matter of "As long as I am willing to spend money, I can save myself".
Wu Guixiang still remembers that he once met a parent of a student at Peizhi School. His family was well-off and his child suffered from autism for many years.
The children’s parents and relatives said, “As long as someone can help take care of the child after we die, we are willing to give all our property, but no one wants to.”
Self-help and mutual assistance
After 5 years of development, Adulan Academy has accommodated more than 20 children for rehabilitation training.
The thriving little classroom still cannot relieve Wu Guixiang's anxiety.
"Just like the word'Adulan' means, it is actually a refuge, but no one knows what the future will be."
Many parents have made their own explorations.
Parents who have worked as financial consultants have studied a Hong Kong trust product specifically for autistic patients; Wu Guixiang visited the prestigious "Zaki Town" a few years ago, which is a Japanese autistic patient for life Nursing institutions, welfare nature, enjoy government subsidies, older people with autism can complete simple hand-made works with the help of staff to support themselves and use the money saved from selling works to pay for the pension expenses.
There is also the "dual support model" that parents have placed their greatest hopes on-parents take their children into nursing homes after retirement, and after the parents die, the children will continue to be looked after by the nursing homes.
Every path is entrusted with the endless expectations of parents.
But the biggest difficulty at hand is that there is no specific approach with strong adaptability and high replication rate for the care of older autistic patients.
Dual-care institutions need subsidies, and Sunshine Workshop needs space... To solve these problems, parents alone can help themselves, which can be said to be a drop in the bucket.
Older autistic patients are unable to integrate into society, and parents have to shoulder the responsibilities of their families. They seem to disappear from people’s sight on the day they graduate from special education schools.
People with autism are in the spiritual world of extreme self. If they do not communicate with the outside world for a long time, their ability will deteriorate, their emotions will be affected, and violent behavior may even occur over time.
"I have been to a family before. The child is in his 30s and is tied at home with a rope. The child's parents told me that he has been unable to integrate into society for a long time and his emotions are very unstable, and many things in the family will be broken by him." Liu Shuo Say.
Future and hope
Self-reliance, leading these autistic youths to survive in society, the experience for parents is complicated.
They got a greater sense of accomplishment and more positive feedback from the children than before, but they also felt more direct resistance from reality.
Wu Guixiang decided to build his own "Zellow Township".
"I hope that the future Adulan Club will be an organization that combines assisted employment and health care for patients with mental disabilities. Our children can achieve all-round development and live with dignity in an environment suitable for them."
This road is not easy.
Although the public's acceptance of autistic patients is increasing, those subtle prejudices are still everywhere.
Wu Guixiang wants to build a bakery in the Adulan Academy and sell it online through an online store, so that children can achieve self-sufficiency and even get social insurance.
At first, she was optimistic, thinking that as long as the production environment is clean and hygienic, the children can operate the equipment proficiently and safely.
After more than two years of training, the children learned to bake and decorate flowers, and the cakes they made were beautiful and delicious.
They also took these cakes to participate in the charity sale, and all the money they received was donated to the poor mountainous areas for children who needed help just like them.
At that time she truly believed that her children could support themselves in this way.
But after a while, she discovered that at some point, she could see the looming threshold between the outside world and the autistic patient.
For example, when applying for a food hygiene permit, some staff members clearly questioned: "Are they qualified to make cakes?"
The same is true for Liu Shuo.
Every Tuesday and Thursday afternoon is their physical education class.
He will take the children to the park on the edge of the community for physical training, and more contact with the crowd will help them improve their communication skills.
The children lined up and walked properly. When they couldn't control the yelling, the parents would immediately stop them, and they would hide themselves out of people's sight as much as possible.
Even so, we will still encounter the dilemma of being watched, "People are surrounded and photographed with mobile phones, we can only take them back, like running away."
The invisible threshold and prejudice stumped them-because they have not yet obtained a food hygiene permit, the dozen or so adult autistic patients in the Adulan Academy can only make cakes for themselves on each other's birthdays.
In 2015, eight departments including the China Disabled Persons’ Federation, the National Development and Reform Commission, and the Ministry of Civil Affairs jointly issued the "Opinions on the Development of Assisted Employment for the Disabled". ) At least one assisted employment agency for the disabled should be established to basically meet the employment needs of intellectual, mental, and severely physically disabled persons with certain working capabilities.
Liu Shuo took the document and went to the newly-built party-mass center opposite the community, hoping to set aside a field for the children to build a sunny workshop for auxiliary employment.
A choir room for the elderly is slowly being built, but the workshop that can determine the rest of the children's lives has been delayed. "Tell us to wait, but no one knows when to wait."
From a realistic perspective, parents' exploration of older autistic patients for the rest of their lives is like this: only a very small number of children with strong ability and good luck can have a relatively stable job with the tolerance and acceptance of society.
The vast majority of the rest, tossed around in various institutions and homes, stumbling, waiting for a light to shine through the cracks in their lives.
(Liu Yuanxu, Sister Liang, Yin Siyuan) (Some interviewees in the article are pseudonyms)