When an autistic boy enters adulthood, "how to support the bottom" makes the parents who accompany them more look forward to it

Qilu Evening News Qilu One Point reporter Li Jing Li Yansong

Wei Xueying took her autistic son Xiaoice playing music and drums at the Science and Technology Museum.

The 21-year-old autistic patient Xiaoice and is still a "child". Time seemed to be moving very slowly on his body. Less than 10% of people with autism have unusual talents, and most people with autism have a variety of pathological features. Where did they go as adults? In the face of parental aging, in the face of the extreme mismatch between physiological and psychological functions, in the face of employment, family and destiny, where should adult autistic patients go? And how to "support" their future, so that the parents who accompany them are more worried and look forward to.

The troubles and embarrassments of adolescence

Xiaoice is 1.8 meters tall, weighs about 200 pounds, and has a strong physique, which looks no different from other boys. After entering puberty, Xiaoice, like other boys, will have a cute impression on girls. Walking on the road, whenever Xiaoice meets a girl, he will always look at the girl twice and look straight at it. He didn't know how to hide his inner love, and he didn't understand why the girl would run away from him.

Xiaoice more troubles of adolescence, and her mother Wei Xueying had more embarrassing moments.

"When the child was young, he didn't encounter any embarrassing things, and now that he is older, we have encountered more embarrassment." Wei Xueying could understand Xiaoice's physiological reactions, but it was difficult to control his behavior.

Once he found Xiaoice staring at the girl, Wei Xueying would remind him. "It's rude for you to behave like this, and it's not right to behave like this." The problem was that Wei Xueying repeatedly told Xiaoice, but Xiaoice could not fully understand it. The social communication and communication barriers brought about by autism make Xiaoice unable to understand that their behavior has exceeded the norms of social etiquette.

More often, Xiaoice life is in a state of calm. Wei Xueying sighed, "He used to be like an ordinary child, no worries, no worries. "In the morning, after Xiaoice have eaten breakfast, they will go out to the community to play by themselves." In the afternoon, he would stay at home playing with his phone and cleaning.

Most people in the community knew about Xiaoice, and Wei Xueying did not shy away from it. "The child always has to go out, he is not paralyzed, not unable to move. He is an adult, and it is not necessarily a bad thing that others know about his condition. In order to give her children more opportunities to communicate with the outside world, she sometimes has to let go of her self-esteem.

Outside the house, Xiaoice can play rollerblading, skateboarding, and many sports. He also likes to play with the computer and type very fast. Learning pinyin, Xiaoice like ordinary children, is also when they are seven or eight years old. The teacher repeats Xiaoice, Xiaoice repeatedly memorizes, "b"" "p", "m", "f". Later, Xiaoice were able to quickly learn to operate computers. Sometimes, Wei Xueying Xiaoice a book, and Xiaoice would knock out all the words of a book within a few days.

Every bit of progress Xiaoice made Wei Xueying proud.

A "special" child in the eyes of others

In the photo, Wei Xueying and Xiaoice standing side by side, making funny expressions. This is a mother and son in an ordinary family. In 2000, Xiaoice was born, but was chosen by fate.

"When children are young, they are very energetic and beautiful." This is Wei Xueying's description of Xiaoice. But what surprised Wei Xueying was that when Xiaoice was more than a year old, she still didn't open her mouth. After arriving at the hospital, Xiaoice was diagnosed with "autism".

Clinical observations and medical studies at home and abroad have shown that children with autism have different degrees of cognitive and other ability disorders. They may also be accompanied by complications such as epilepsy, self-injury, anxiety, and depression. Even the best children in all aspects will never be able to fully understand the emotional world of ordinary people.

"But he doesn't look like a problem kid at all!" When a child fell off the window sill when he was a child, he only had bruises on the bridge of his nose, so he couldn't cause this problem, right?" He'll run over and get something for you, why don't you just don't talk"... Wei Xueying and her husband constantly deliberated on the cause of Xiaoice illness and constantly overturned these ideas. A large number of studies have shown that the causes of autism spectrum disorder are comprehensive, not a single cause.

After accepting the reality, the husband was responsible for the children's medical expenses and the living expenses of the family, and Wei Xueying decided to quit her job and concentrate on accompanying Xiaoice to do sensory training. In the families of people with autism, such a division of labor is common. According to the "China Autism Parent Demand Questionnaire", 52.4% of families have one person who gives up his job to take care of anarcissistic children, and most of them are given up by their mothers.

Since then, home, school, rehabilitation center, Xiaoice lived a "three-point and one-line" childhood.

"Dad-Dad, Mom-Mom" "jumped out of Xiaoice mouth word by word." That year, Xiaoice was 4 years old. "The first time I hear my 4-year-old call mom, it's hard to describe." On that day, Wei Xueying took Xiaoice to do sensory training as usual. The teacher repeatedly taught Xiaoice to speak, and suddenly he heard Xiaoice mouth open. During that time, Xiaoice's language skills improved by leaps and bounds, and the teacher was also very surprised. "It went by so fast, that stage was almost forgotten. Just happy. Wei Xueying sighed.

Xiaoice could speak, but his language was broken, and he could only speak word by word, and could not even speak two ordinary words coherently.

Fortunately, Xiaoice there was no violent tendency, and Wei Xueying sent her child to an ordinary kindergarten. Every time Xiaoice read out a children's song, Wei Xueying would not hesitate to praise the child. Although she knew in her heart that the other children had learned four or five nursery rhymes, Xiaoice could only learn one. "Some people say that autism has a particularly strong memory, and I think that's the case with him." Wei Xueying went on to add, "But his memories are all mechanical and stereotypical. He could recite nursery rhymes, but he couldn't understand them. "Seeing Xiaoice arithmetic book is wei Xueying's biggest headache." Arithmetic, not to mention. ”

The "particularity" of the Xiaoice makes people around pay special attention. "When people stopped him and frightened him, he didn't dare to move, so he hid aside." Seeing such a situation, Wei Xueying's heart tightened and decided to transfer her child to a special education school.

Mom is a "translator"

What made Wei Xueying feel relieved was that Xiaoice learned to dress and eat at a normal age. But fine movements are a big problem, like tying shoelaces. Wei Xueying could only use a stupid method - through repeated practice to become a mechanical memory.

Emotion is something that is difficult to avoid. Sometimes, Xiaoice encounter something he doesn't want to do, he will keep talking. Once he "ignites" Xiaoice emotion, he will "snort" a loud cry. In order to control the outburst of Xiaoice emotions, Wei Xueying will do everything she can, "I don't know how much patience has been paid."

The most patient thing is the question of "money". Xiaoice knew he could shop online, but he had no concept of money. "He doesn't know if these things are useful or not, whether they are necessary to buy them, or if the price is right." Out of concern, Wei Xueying did not dare to put money on his WeChat and Alipay. "He likes phone cases, and all ten out of ten are small things. He also wanted an excavator, and something particularly outrageous that you wouldn't even imagine. Wei Xueying was helpless.

"If we don't pay, who pays?" Wei Xueying sometimes blamed herself. "We can't give him too good conditions, but at least we can ensure his food and clothing, and ensure his positive energy." Luckily, children are kind by nature and like to help people. ”

After Xiaoice attended a special education school, Wei Xueying began to work in the community, on the one hand, she could subsidize the family, and on the other hand, she could take care of the children. When Wei Xueying went to work, Grandma would prepare breakfast for Xiaoice, and Grandpa would ride an electric car to pick up Xiaoice school and end school.

In order to let Xiaoice learn to travel alone, Wei Xueying will accompany him on the bus and train him to remember the way. Wei Xueying said, "After getting on the bus, he will report to the station himself, from which station to get on the bus, and at which station to get off, he remembers very clearly." After confirming that Xiaoice accurately remembered the route, Wei Xueying decided to let him try to take the bus to school by himself. A few times ago, Wei Xueying would be very worried and always quietly follow behind. After discovering that Xiaoice was capable of this task, Wei Xueying taught him how to deal with the wrong station or transfer.

Xiaoice met friends at a special education school. Sometimes, Xiaoice will talk to friends by voice. Wei Xueying said: "The language they chatted with was relatively simple content, such as whether they ate or drank, and some content was difficult for people to understand."

In the eyes of outsiders, Wei Xueying is the "translation officer" of the Xiaoice. "It's not that I don't have any obstacles in communicating with him, it's that I know him well and I know what he wants to say." Wei Xueying said.

"I don't dare to think about the object of finding things"

To say Xiaoice grew up, it's because he did make a lot of progress. As an adult, Xiaoice learned to wash clothes, sweep floors, wipe glass, and bake cakes. When Wei Xueying was tired from work or when she was unwell, she Xiaoice able to observe the color, and then approached her mother and accompanied her. "Although children grow up and mature and bring a lot of troubles, there are more joys than troubles." Wei Xueying felt content.

But many times, Xiaoice is still a "child". Once, Xiaoice went out to play by herself, and when she came back, she started talking dirty. Wei Xueying said, "A child is a mirror. Listen to what he said when he came back, and you can know what happened to him. Xiaoice unable to understand the meaning of the dirty words, at this time Wei Xueying could only tell him repeatedly that he could not speak like this.

In 2020, Xiaoice has not found a job since graduating from a special education school. Some of the students who graduated together went to the cake shop to work as pastry chefs, and some went to the company to work as security guards. Wei Xueying said: "The point is that he now has his own opinion, and he doesn't like to do these tasks." Xiaoice loves to play with computers, he wants to learn programming, and the idea is even stronger this year. But this made Wei Xueying feel troublesome.

According to incomplete statistics, there are currently more than 8 million elderly autistic patients (over 14 years old) in China, while the care of autistic patients is usually only up to 10 years old, and some cities can reach 16 years old. In the mainland, the professional training, career choice, employment problems and needs of older children with high-functioning autism have reached an imminent point. People with autism who have entered "older age" and even adulthood face difficult choices for employment. The reality is that many people can only choose to go home or take care of them.

Liu Lu, director of the Education and Rehabilitation Department of Shandong Rehabilitation Research Center, said: "At present, the employment of children with autism is divided into sheltered employment and supportive employment. Children like these, because of their own obstacles, if they start vocational education at the age of 18, it is a bit late, so they should move the time forward and intervene in some vocational education around the age of 14. Liu Lu also stressed the importance of the environment and occupation for autistic patients, "The change of children is largely supported by the surrounding environment." If an older child stays at home and can't work, his progress may be minimal and it will be difficult to find a sense of value. ”

Huang Qi, a member of the National Committee of the Chinese People's Political Consultative Conference ,D.C. who has been campaigning for the rights and interests of autistic patients over the years, suggested in this year's proposal the introduction of support policies to encourage the employment of autistic people, improve the family health insurance protection system, and set up a autism family health care center.

"Looking for an object, don't dare to think about it." If I had a daughter, how could I consider marrying him?" But Wei Xueying also had some expectations, "Except for a slight difference, my son is very good, and he looks quite handsome." Look at fate, maybe someone can look at him. Thinking of the stereotypical behavior of Xiaoice throwing hands, Wei Xueying's attitude swayed again, "But this probability is very small." ”

Wei Xueying, 46 years old, knows that autism will accompany Xiaoice for the rest of her life. Wei Xueying confessed: "I didn't want a second child, because I felt that it was unfair to let another child take care of him." The mother's solution is to let Xiaoice learn more skills, from being able to take care of themselves to being able to stand on their own. Talking about this topic, Wei Xueying's heart was a little heavy: "In the future, I hope he can find a job." We can take care of him while we're alive, but what should he do when we're gone?"

On sunny days, Xiaoice will get on the bus to climb the mountain. "In the adult world, 'children' can only take care of it slowly." Wei Xueying looked at her son's tall figure and said.

(At the request of the interviewee, Wei Xueying and Xiaoice are pseudonyms in the article)

What is autism?

This year, 2 April marks the 15th World Autism Day. Autism, also known as autism, is a disease of generalized developmental disorders. People with autism are called "children of the stars", and they often have social communication disorders, communication disorders, stereotypes in behavior, and indulge in their own world, like stars in the sky, distant and lonely twinkling. According to the "Report on the Development of Autism in China" released in 2019, the number of autism patients in the mainland may exceed 10 million. On the mainland, about 1 in 68 children suffer from autism. At present, autism cannot be completely cured.