Chapter 13 Childhood Autism

Childhood Autism (1) They can't speak, their movements are rigid, and they only live in their own world.Seeking medical treatment, studying, training, and foster care, their parents hit walls everywhere.According to statistics, there are more than 800,000 autistic children under the age of 14 in China, and there may be even more undiscovered children with autistic tendencies.Autistic children, distressed parents, where is their way out? 5-year-old Zhang Siyu and her mother are from Datong, Shanxi. On August 20, 2007, they came to the Xingxingyu Education and Training Center located in Dongxu Apartment in Beijing to attend classes.The training class is mainly aimed at more than 40 children aged 3 to 6 and their parents, with the purpose of maximal intervention and correction before the child's brain development is fully finalized.These children are all autistic.

Children's autism, also known as autism in children, is a universal developmental disorder. The main symptoms are not interacting with others, unable to establish normal social relationships, lack of emotional response, language development disorders, stereotyped repetitive actions, etc.Although scientists have done a lot of research on genetic factors, neurobiological factors, and social and psychological factors, they still cannot explain the pathogenesis of such diseases so far.Siyu's mother: Every parent is in pain, but there is no way.I am a teacher, and I educate other people's children every day. Sometimes I wonder, aren't my children the flowers of the motherland?Is no one in charge?On the day I saw Zhang Siyu, she was wearing a small red top and pink bloomers, running around in a large venue, seeming to be interested in everyone in the venue, but also seemed indifferent to everyone.At first glance, she looks no different from other children, except that her hands keep moving.Siyu Xiaxia eats two popsicles every day. When she followed her mother to the supermarket this day, she didn't leave and pointed in the direction of the supermarket—she wanted popsicles.Mom refuses to buy it for her, and Si-yu starts crying, running around, and screaming loudly.She can't express it in words.Siyu's mother: She calls "Dad" and "Mom" very early, and she will call after 8 months. It is quite normal and she calls clearly.But it seems that only the two pronunciations of "father" and "mother" have been pronounced, and no other sounds have been uttered in the future. After more than 1 year old, there is no pronunciation, and "father" and "mother" are gone.She has no language.Language impairment is a typical symptom in 50% of children with autism.Their vocal cord structure is normal, and they understand what they want to express, but they just have no language.Zhang Siyu is very sensitive to music, and often hears certain songs, and starts to cry for no reason.This is also one of the symptoms of her autism.Reporter: Which music makes her cry when she hears it?

Siyu's mother: Usually it is a song with a relatively slow rhythm, like "Story of a Small Town". When she heard this song, she cried, as if she was very sad.Looking back, she seemed to be different from other children when she was four or five months old.At that time, she was very obedient and didn't make trouble every day.At that time, my mother said that there was something wrong with this child, but she couldn't tell where it was wrong, because she didn't have the feeling of dementia in terms of face and body.We thought at the time that girls might be better behaved, but now that we think about it, something was wrong with her at that time.

This is the earliest manifestation of her daughter's autism symptoms that Siyu's mother can recall. Later, she discovered other problems, such as her daughter did not learn to walk until she was two years old, her language function deteriorated, and she would only cry when things went wrong. Indifference to the world around you.Siyu's mother: After she was two years old, she had more stereotyped movements. She likes to find soft things such as cloth strips, ropes or plastic bags. When she gets them, she starts to play around.Later, I gradually became fixed. I like to play with ropes. When playing, I still gesture and sometimes hum in my mouth. It is obviously different from ordinary children.Stereotypes are another classic symptom of autism.Every child with autism has different stereotyped movements. Some like to keep turning in circles, some like to keep turning the pages of books, and some like to categorize things.Stereotyped movements are the main life content of children with autism. If they don't interfere, they can play all day long.Reporter: Will she play with other children?

Siyu's mother: each play their own way, run around.She has a social interaction disorder, can't communicate with others, and can't play with children.There is only herself in her world, and she doesn't care about others at all.For example, for ordinary children, when someone close to her leaves, she will cry and want to follow.But Zhang Siyu couldn't, she never cried and clamored who she wanted to go with.At that time, we didn't understand this disease, and said that Zhang Siyu didn't care about the world, as if it didn't matter to me who came and went.In fact, these are not normal.

Reporter: Does your family understand? Siyu's mother: The family members generally feel that the more problems the child has, the more sorry they feel, and the more they should treat her well and like her, the family will have no problems.Being a parent is stressful for sure, mainly her schooling issues.The more such children stay at home, the more serious the situation will be.Without words, Zhang Siyu often cried and yelled.Compared with ordinary children, this crying is more hysterical.Zhang Siyu used to go to kindergarten, but was persuaded to leave by the teacher after two months of school.Unable to seek medical treatment, study, and live independently without her parents, her mother had to let her stay at home every day and guard her with the utmost patience.Siyu's mother: She ran around.Others were sitting quietly in class there, but she would slap the table, yell, and run around.Which school would want her, no one wanted her.

Reporter: Why don't you try again?Maybe this kindergarten will not work, but another kindergarten will do. Siyu's mother: Probably not.Who wants to have a child with problems.She also hits other children, and can beat people.Children like them are getting more and more... how to put it, maybe with the passage of time and the development of society, someone will take care of them after all.Generally speaking, I always feel that they are the abandoned group, belonging to the part that is abandoned by society. Reporter: What does she do at home every day? Siyu's mother: Play by yourself.Others have to go to work.This kind of child is actually quite pitiful. Others don't understand her, because she looks normal on the surface. If she is that kind of dementia, people will think this child is quite pitiful.No pity for a child like her.What worries her most now is what she will do in the future.Now that we are in the prime of life, there will be no major problems, and we can take her with us all the time, but we will definitely be born, old, sick and die. Can you guarantee that you will always be healthy?Haven't been surprised?She has grown up slowly, and her self-care ability is not good. What if we have an accident, what will she do?This is the most worrying question.Children will eventually grow up, which is a relief for many parents, but for parents of children with autism, it is the beginning of disaster.Huang Zhen is a grown up autistic child.He is 14 years old this year. Like other autistic children, Huang Zhen has abnormal language, communication barriers, and rigid behaviors. But at the same time, he has the mania and violence that most autistic children do not have. He constantly hurts himself and others, and is full of violence. with his life. In August 2007, Huang Zhen was taken to Beijing by his father for surgery.Tian Hong (Doctor of the Second Affiliated Hospital of Tsinghua University): The purpose of the operation is to eliminate his aggressive behavior and self-harm behavior, let him manage his life with the help of others, and provide some training and education later.

Huang Zhen's father: The first risk of this operation is that he may die unexpectedly, and the second is that he may become a vegetative state.Even such a result, I am willing to accept it, because I have no choice but to make the best choice for him.Huang Zhen has been showing obvious violent tendencies since he was 12 years old.The video data provided by Huang Zhen's father recorded the changes in his son's symptoms in 2005, 2006, and 2007: In 2005, Huang Zhen was 12 years old.When he is in good condition, he can walk outside accompanied by his father and go to the canteen to buy his favorite snacks.When there was a quarrel, his father tied his hands with cloth strips, but he could still take care of him alone. In 2006, Huang Zhen obviously grew taller, and his self-mutilation behavior became more serious. His arms were covered with scars from biting himself.Sometimes he would slap himself suddenly and violently with his hands.His father grabbed his hands, and he headbutted his father hard again.It was already difficult for the father to control his self-harm behavior by himself, so my uncle came to help.As a last resort, Huang Zhen's legs were also tied to the edge of the bed.Since 2006, in order to prevent Huang Zhen from self-harming and attacking others, his father locked him in a cage with iron chains when he was unattended.This situation continued until 2007.Huang Zhen's father: From the age of 3 to 14, he attended 17 schools in 3 counties and cities, including 5 kindergartens.I remember that in his first year of school, I apologized to others more than 30 times.He has more than 80 scars on his hands, all from biting.His back was hurt, his head was hurt, his hands and feet were hurt.I watched him in pain, hitting himself, biting himself, hitting himself every day.I don't expect my child to be like other children, as long as he can live happily, go to school happily, play with children, don't live in pain every day, don't beat himself, bite himself, I feel Parents do their best.I studied everywhere, sought medical treatment, and tried to find solutions, but to no avail.The child is like this for one day, two days, every day, one hour, two hours, and it is still like this.I can't help it, I'm afraid he won't be able to control it, so I can control it with just one tie, so I can only lock him every day, at least when there is no one within one meter of him or when I am very tired, I have to lock him.The development of Huang Zhen's condition is a common problem faced by many autistic children entering adolescence and adulthood.They have more psychological and physical needs, but these needs cannot be expressed at all, or cannot be realized. Self-harm and hurting others have become a way for them to vent their feelings, and parents must monitor them 24 hours a day.Huang Zhen's father decided to operate on his son after traveling to more than 30 provinces and cities, and tried any remedies and remedies he heard.

Childhood Autism (2) Huang Zhen's father: As a father, I made this (surgery) choice for him. I believe that whether he knows it or not, he should not hate me.First, I want to reduce his pain and harm to society.Second, many autistic children are accompanied by manic symptoms. When drugs cannot control them, surgery can provide them with a reference.I know that many parents of children with autism feel the same way as I do, but to different degrees.For so many years, I have tried every means for my children. I have gone through thousands of mountains and rivers, gone through untold hardships, experienced thousands of hardships, suffered thousands of beatings, received thousands of scolding, and consulted thousands of times. Thousands of people (finally making this choice), I hope the outcome will be good. (crying) But no matter what the result is, I don't think I regret it.My name is Huang Zhen and I want to see a doctor

i want to read want to play with children ... This is what Huang Zhen wrote when he was not ill.But his "children" can only be the 33 small alarm clocks placed on the side of the hospital bed, because the alarm clock has both sound and avatar.Besides, he didn't know anything about his father's expectations, worries, fears, and apprehensions. At 9 o'clock on August 22, 2007, Huang Zhen was pushed into the operating room.His father hadn't slept the night before.At 4 pm, Huang Zhen was pushed out of the operating room.No one knows whether he will be better when he wakes up.Huang Zhen's father: I don't know how to say it, I can't express it in words.Sometimes I have no choice but to wrap my child in a rag for fear of hurting him.Sometimes when my child loses his temper, I lose my temper myself.Sometimes, I look up at the sky and say, God, you are so unfair to me.But for the sake of my child, I have to persevere. I still believe that God is fair to me, and my child will get better one day... In the home of autistic patients, the pain of the child and the pain of the parents are intertwined.After experiencing the difficulties of seeking medical treatment and studying, they turned to the long process of seeking help. What they hope is that the society will give them more living space.The Xingxingyu Education and Training Center, which specializes in dealing with autistic children and their parents, has given them such an opportunity, and also given the society a brave attempt to learn to face autism correctly.Tian Huiping (Founder of Xingxingyu): Our "Xingxingyu" mainly does parent training, and children are just props.

Reporter: Why is this positioning? Tian Huiping: Because in China, if a family has a disabled child, who is their lifelong caregiver?It is the parents.So if you want to help a child, you can only help his parents.We hope that there will be no parent training, and we hope that there is a place for parents to send their children out, so that parents can live a normal life themselves.Because no parent should be deprived of the right to a normal life, but in fact they cannot live a normal life, they must always think about how to take care of their children, and take care of their children for life. Siyu's mother: I think that after the parents' meeting (in the "Star Rain"), the understanding has improved compared to before.The most obvious feeling is that at least I thought about how to accept this autistic child and how to help her in the future. This is a long process.No matter how painful or cranky I am, it doesn't make any sense.Regardless of whether fate is fair or unfair to you, you have already suffered, and you have no choice but to face it correctly.I think mental state is very important. If you feel better, you may be able to take care of her more. If you break down, she will be even worse.While training parents, "Star Rain" also provides individualized education programs and preschool training guidance for children with autism.In an exercise class, the teacher asked the child to raise his hands and feet and do some simple movements.However, Zhang Siyu is the same as other children, it's not that he can't do it, but he can't do it according to the teacher's instructions.They cannot control themselves or others.Tian Huiping: He sits down wherever he pleases, and he sits down when he hears others tell him to sit down. The two are different.The latter is social interaction, while the former is physical action.What we train is the latter, so that he can sit down after hearing the command to sit down.Once he sat down, we rewarded him and told him he was doing the right thing.If he's not doing it right, we sit him down and tell him that's what he's doing. Siyu's mother: She is a blank slate.Sometimes I feel that what she should do in her age group, and ask her according to the performance of children in this age group, is actually wrong.The teacher here taught her very patiently, starting with some simple movements, such as clapping hands, legs, and stomach.We tend to ignore these at home, thinking that she should have known them long ago.In fact, she may be able to, but she will not cooperate well with you. It is not that she sits when she is asked to sit, but only when she wants to sit.At this point, my understanding has also improved a lot. "Star Rain" uses a training concept called ABA (Action Training Method) for children aged 3 to 6.For autistic children aged 12 to 16 whose development has been finalized, "Xingxingyu" implements foster care.At present, the Nursing Department of "Star Rain" fosters 6 children. Through the camera, the teacher monitors the children's activities in each room in the office.In addition to text, there are more pictures and physical signs in the maintenance department. The 6 children understood the meaning of the teacher through the prompts of the pictures.The conservation department also prepared some self-made teaching aids, and the teachers would train the children on simple tasks such as color classification, simple assembly, and paper-cutting.Teacher: Sometimes when you talk to him, he may not quite understand what you mean, so we will use pictures to remind him.For example, showing him a picture of the workshop means asking him to go to the workshop.After he went downstairs to the workshop, he would take his own photo to find his position.We often arrange three to five teaching aids in the workshop, and set some subjects for him to do according to his ability, such as recognizing colors, hand-eye coordination and so on.We envision to provide them with pre-employment training, and hope that after they are trained here, they can go out and do some work by themselves.Children with autism do more rigid jobs and can do some assembly line work. Tian Huiping: The maintenance department is the training method of TEACCH. TEACCH has a different concept from ABA. ABA should try its best to improve the adaptability of autistic children so that they can adapt to the society. TEACCH is different, for example, he can't speak, can't read, can't see people, or can't sit still, then I don't want to train him to speak, read, see people or sit down, but to see what he can do, and then Create an environment for him based on what he can do and let him do it.This is called TEACCH, and the philosophy of TEACCH is to adapt the environment to people. Zimo Comments: People once gave the most beautiful metaphor to children with autism, saying that they are stars hanging in the sky, living in their own world, not knowing that there is more than happiness there.And people also use the most miserable words to describe the life of the parents of children with autism. They live in the cruel reality, sad, desperate and helpless.No matter from the medical or sociological point of view, the onset of autism cannot be explained.For autism, people can't even give a scientific definition, only can describe its symptoms.The congenital and incurable nature of autism afflicts every sick child and their parents, and at the same time poses a severe challenge to the people living around them.No one can deny that children with autism, like us, are also members of society and need the respect and equality that normal people can enjoy.Please give more equality and respect to those autistic children living around us.