The history of the discovery of autism on the mainland is not long. In 1982, Professor Tao Guotai of Nanjing discovered and confirmed four cases of autism in children, and opened Chinese mainland research on autism, which has been exactly forty years.
Judging from the length of an ordinary person's life, the first generation of children with autism diagnosed forty years ago have entered middle age, and the parents behind them have passed the age of flower nails.
If middle-aged people are facing the "35-year-old crisis", then what hangs in the hearts of autistic families is the "14-year-old crisis". For most autistic families, 14 is a watershed. After the age of 14, the social welfare benefits such as medical care, education, and childcare available to children with autism plummeted, a phenomenon that scholars called the "welfare cliff". This is not the plight of a few. The data shows that in 2016, there were 10 million people with autism spectrum disorder in the mainland, and nearly 8 million people were over 14 years old. We have to face the fact that parents will eventually grow old, and where do these "children trapped in the shell of adults" go?
On April 2, World Autism Day, Tencent News and Tencent Public Welfare launched the "Love Makes GrowIng Up Not Lonely" Little Red Flower Day theme activity, entering the world of older autistic groups.
38-year-old girl with autism: from 'adult crisis' to 'midlife crisis'
On April 2, Zhang Ge celebrated her 38th birthday. As one of the first girls diagnosed with autism in China, the experience of Zhang Ge and his parents over the years can be seen as a microcosm of this huge group.
On the birthday, Zhang Ge and his parents came to the park near their home for a walk.
35 years ago, when three-year-old Zhang Ge was diagnosed with autism, the first thing that surged into the hearts of Zhang Ge's parents was "despair". After all, this is a "gifted child" who once had high hopes: one and a half years old obsessed with reading the weather forecast and can recognize the names of all cities; more than two years old can skillfully read newspapers... But in kindergarten, Zhang Ge's difference has become more and more obvious, in school, there is no one else in her eyes, always immersed in her own world.
Reminded by the teacher and for the sake of prudence, his parents took Zhang Ge to Nanjing Brain Hospital for treatment, and was diagnosed by Professor Tao Guotai with children's autism. It was 1988, and the current situation of domestic autism research was still "a blank", there were no treatable drugs, no educational institutions, no professional teacher guidance, and even few people knew what "autism" was.
Dr. Helen, a doctor of special education, has volunteered to help Zhang Ge since 1992 and in recent years has trained Zhang Ge's communication skills through video every week
"I asked the doctor, can she take care of herself in the future?" He said no. Can I go to school? No. Can it work? No, this child needs to be cared for for for life. Zhang Ge's mother, Wu Suxing, said.
She remembered very clearly that after learning the diagnosis that winter, her only thought was to take Zhang Ge out of this world. "What we wanted was to find a tunnel farther away from Nanjing, walk in when it was dark, and when the train came, our family of three could be 'one hundred.'" Wu Suxing recalled. But in the end, the young parents still did not have the heart to bear it, and decided to start a life where the father earned money to support the family and the mother was accompanied full-time.
Zhang Ge practiced drumming under the leadership of her mother, and she also learned to blow pipe.
In 1999, 15-year-old Zhang Ge graduated from a special school, for ordinary families, "graduation" means that life has entered a new stage, but for autistic families, it means the arrival of "welfare cliffs".
More than 3,000 autism rehabilitation institutions across the country can receive less than 5% of the elderly autism. In addition to home, Zhang Ge has almost nowhere to go, which is also the common dilemma of the elderly autistic group. BabyTree data shows that 89% of people over the age of 30 who are autistic can only spend most of their activity time at home.
In order to keep Zhang Ge from losing contact with the outside world, Wu Suxing contacted the library in the community, so that Zhang Ge could become a volunteer, although his intelligence was insufficient, but his super memory allowed Zhang Ge to be competent for this job, and it has been almost 17 years. In his mother's video record, Zhang Ge seems to like the job, although due to the closure of the museum, Zhang Ge will still go and miss his workstation through the glass door.
Despite growing older, Zhang Ge has always lived in her own world, and she has no response to the "mid-life crisis" feared by her peers. Mother Wu Suxing could not help but worry: "The things that trained her, we did it ourselves, but we really couldn't do anything about it to integrate into society." [Click to participate in helping older autistic groups integrate into society]
Zhang Ge sorts and organizes books in the community library.
22-year-old autistic youth: temporary sanitation worker, part-time guitarist
Most people are still immersed in sleep, and tomorrow autumn has put on their overalls, picked up a broom, and started the day's cleaning work along the streets of the community.
Tomorrow autumn, you need to get up at six o'clock every morning to clean the road in the community.
Although this is a temporary job with a monthly salary of 1,000 yuan, it is a rare opportunity for an autistic youth, after all, before that, her mother Hua Jie did not hit a wall with Ming Qiu.
In 2019, Hua Jie took MingQiu to try an auxiliary employment, but the first time failed. After a few months of going back, it still failed. Later, Hua Jie tried to contact the courier point near the community to find a job for Ming Qiu, but it still couldn't work. "For a job like sweeping the floor now, it doesn't matter if the salary is lower, as long as there is one thing to do." Sister Hua said.
Why look for a job?
For Hua Jie, this is not only out of the need to "integrate into society", worried that tomorrow and autumn are out of touch with reality, and too dependent on parents, but also to reduce the family's economic burden to a certain extent.
After all, every stage of the growth of autistic children requires families to pay a lot of energy and money, and rehabilitation training is a long process, and many families of autistic children are difficult to maintain. In China, the monthly institutional rehabilitation costs are generally in the range of 3,000-8,000 yuan, and in the first-tier cities of Beijing, Shanghai, Guangzhou, and Shenzhen, institutions with high-quality rehabilitation resources usually have an average monthly cost of more than 10,000 yuan. Families with autistic children often need one parent to give up work and accompany the child for rehabilitation training full-time.
It may be difficult to perceive this invisible pressure in the autumn, but as a parent, you bear it all the time. In order to subsidize the family, during the day, Hua Jie needs to work in the community with Ming Qiu, and at night, she also has to do live broadcasting with goods, and sleep less than four hours a day. "For more than twenty years, we are still like this, more and more economically strapped, and everywhere is in tatters."
Flower sister and Ming Qiu's home.
"I really hope that he will be like a drop of water into the sea, never to be found again, to become an ordinary person, no longer so special kind." 」 Sister Hua said with some trepidation.
In the eyes of Hua Jie, Ming Qiu on the stage is the most charming, carrying a guitar Ming Qiu, always with a smile, looking at the mother waving to him on the stage, the body will also gently swing with the melody and lyrics, "just like an ordinary child."
Tomorrow Autumn rehearses with the band's friends.
Ming Qiu's "Heart Youth" is a band composed of four young people with mental disabilities. Ming Qiu is the guitarist, and the drummer, keyboardist and lead singer are all boys of his age. Their new song is called "A Shooting Star", and every time they sing this song, the young people on the stage seem to become calm, "Is my heart already asleep, has become numb, and has been lonely, should I be like this?" ”
The lyrics are about the "acceptance" dilemma faced by most older young people with autism, and Ming Qiu and his family are still struggling with it. 【Click to participate to help the elderly autistic group integrate into society】
Flower sister who is watching the performance of the next autumn.
Grandma 72 and grandson with autism at 19: holding up his future for the rest of his life
Compared with the stumbling when looking for a job in the autumn of tomorrow, 19-year-old Zheng Senyou seems much luckier. After all, across China, the employment rate of adults with autism is less than 10%.
Friends at work.
Senyou's job is a quality inspector of a clothing company, and his main job is to unbuckle the garments leaving the factory, quality inspection, and then paste product labels and code labels, and re-bag. The situation at work is ever-changing, for Senyou, Grandma's "assistance" is the driving force to support him to stick to this post, 72-year-old Grandma Xu Ping will accompany 19-year-old Senyou to work together, in the work encountered Problems that Senyou is difficult to understand, Grandma will come out to support.
In the eyes of colleagues, SenYou is more like a "pistachio", always smiling and hehe, like to make people happy, "he has no distractions in his heart, doing things is doing things." Colleague Aunt Lin said. As Xu Ping said: "He has met a company that can not be sought, and it is his own effort to stay, but to be able to meet such a good environment, this child himself is blessed." ”
Grandma accompanied Moritomo to work and gave him "assistance".
But even surrounded by so much kindness, Grandma Xu Ping could not be completely at ease, "After I die, what will happen to the child?" The ultimate anxiety of all older autistic families has always trapped her.
Some time ago, Xu Ping recorded a thrilling experience in the circle of friends: Grandpa suddenly had a heart attack, fortunately, Senyou was at home, under the guidance of Grandma, he held Grandpa on the toilet in time, and waited until the ambulance came to turn the crisis into safety. It was more like a warning, making Grandma more eager to teach Mori yu the life skills she needed to stand on her own feet.
Grandma instructed Moritomo to cook potato braised pork.
Grandma said that although her body is OK, but after all, the age is older, "I can't estimate how long I can still accompany Senyou, I can only race against time, and use the rest of my life to support Senyou to be able to stand on my own in society."
She hopes that Moritomo's fortunate life will become a model that can be copied, bringing a light to those who are similar to him. 【Click to participate to help the elderly autistic group integrate into society】
Grandma and Mori yo are on their way to work.
Source:
China Autism Institutional Service Association
BabyTree "White Paper on The Investigation of Autistic Families in China"
Blue Book on the Needs of Autistic Families in China
"Report on the Development of Autism Education and Rehabilitation Industry in China"
2020 Child Development Disorder Rehabilitation Industry Report
Written | Cheng Jiawei edited | Zhou Wei
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