Author James Small Sugar Antenna
Editor’s Note
Today, April 2, is “World Autism Awareness Day” and this year’s theme is “Eliminating Mistakes and Advocating Inclusiveness”.
To this end, we interviewed some parents of autistic children to try to understand their stories.
At eleven o’clock in the evening, I just finished chatting with the mother of an autistic child, dense, turned on my cell phone and found two missed calls from my mother.
I remembered that I asked Sensen’s mother: [What do you think: Some people say that taking care of autistic children is an unpaid effort.]
She said to me:
In fact, these special children may give us much more in return than ordinary children. Especially now that children are adults and we are getting older and older, we will find that this kind of companionship is actually very precious to us.
The children of some of my classmates and friends have lived in high school or even junior high school, and even left home even further when they went to college. In the future, studying abroad, going abroad, working… may not necessarily come back. Therefore, there are many [empty nest middle-aged families] around me.
In my opinion, ordinary children will receive much less feedback than our special children.
On the day we called, Sensen’s mother and son spent a day in Wuxi. On the trip, Sensen took the initiative to take care of the luggage.
However, my mother’s two missed calls both rang for 45 seconds, which was the time from dialing to hanging up automatically.
[Autism] The medical name is [autism]. It is not a simple [silence] or [introversion], but a real neurological disease.
No group is flat, but many people’s understanding of autism only stays in the image of “silent genius” in movies and TV plays.
We found some parents of autistic patients and tried to understand the stories behind them. Today, I’d like to share four of them with you.
When the child is diagnosed,
Parents have different moods.
When the doctor diagnosed Congcong as autistic, Congcong’s mother [still had some lucky psychology, thinking that she might have spent less time with her children since childhood.]
Congcong’s family is in the countryside of Changyuan, Henan Province. Congcong’s mother usually works in the village’s medical equipment factory in addition to farm work. Congcong’s father is a big truck driver and is away from home all the year round.
Congcong learned to speak and read normally when he was over one year old, but he just didn’t want to get along with other children. In their village, there has been no such disease. Congcong’s mother has never heard of [autism] at all and thinks he is introverted.
After Congcong was more than two years old, he also entered the kindergarten in the village step by step.
However, this period of study lasted only one week. He was still a maverick in kindergarten and played with himself. Other children did not play with him and even laughed at him as a fool.
Sometimes Congcong will not say what other people are playing with, but will bite other people’s hands directly.
Later, at the suggestion of the kindergarten teacher, Congcong’s mother took her child to Zhengzhou Children’s Hospital. When the diagnosis was made, although she was stunned, she did not think it was a serious disease.
However, for parents who have known autism in advance, the moment of diagnosis is a completely different mood.
Another child, Aaron, was diagnosed with autism only when he was 5 years old.
Even though he began to doubt early and did psychological construction for himself, on the day of the diagnosis, after Aaron’s mother took him out of the clinic, she could not help crying bitterly with her child in her arms in the hall of the hospital.
Aaron and his mother
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Photo Source: Interviewee Provides
She said [in the midsummer of 40 degrees, it is cold from head to toe], and the child in her arms cannot feel her feelings.
Some parents even told me:
At that time, I felt that I would rather have my daughter terminally ill than autism. Because I know that autism is lawless and may not be good for the rest of my life.
Everyone who cares for autistic children
There have been times when they have collapsed.
After the child is diagnosed, the trajectory of almost every family will change. In many families, one party will have to resign to take care of the child.
Xiao Hao’s father is one of them.
When I called Xiao Hao’s father, I heard a [babbling] sound nearby. He explained to me: It was Xiao Hao who asked him for snacks.
Xiao Hao, five years old this year, has not yet learned to speak.
At first he put Xiao Hao in a special school [intervention], but after two years, the child’s [progress] was very little, so he decided to intervene himself.
But this made him collapse even more. He once commented at the bottom of one of our articles:
Every time I see people pushing about children, I am very anxious because I don’t see people with autism. My son, like me, has few things and can’t speak when he is over five years old. Is this how he has lived in his life?
Xiao Hao
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Photo Source: Interviewee Provides
It took him two years to teach Xiao Hao to open the door and go to the toilet, which [ordinary people look at very simple life skills].
Starting from this year, Xiao Hao’s father also began to plan to find some part-time jobs.
If wasting time for his progress, I think it is worth it. However, I did not see what’s progress, giving too much and getting too little.
Leaves can ripple when they fall into the water. Taking care of autistic children does not necessarily lead to the desired harvest.
Some autistic children will also lack the ability to empathize. In their thinking, there is no difference between people and things, even if it is to take care of their accompanying parents.
For example, Congcong’s mother checked a lot of information on the Internet after her child was diagnosed, only to know that autism means what.
In the more than 40 minutes when I called Congcong’s mother, she sighed seven or eight times [alas].
After the diagnosis, she accompanied her children to a special school in Zhengzhou for two months.
Suddenly one day, the family urged her to go back. Although she did not explain the reason, she still noticed something strange. On the bus back to Changyuan, Congcong talked to himself, while she learned on the phone that her husband was killed in a car accident while pulling goods.
Hung up the phone, Congcong’s mother wept bitterly. She also told Congcong: “Your father is gone.”
After hearing this, Congcong continued to talk to himself, talking and laughing, knowing nothing.
Congcong
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Photo Source: Interviewee Provides
Aaron’s mother told me in the interview that once she had a fever of 38 degrees, but she still had to pick Aaron up from school, cook for him, bathe him, and put him to sleep.
Before going to bed every night, I would tell Aaron the picture books. Although my throat was sore and I was smoking, I finished all three books. Turn off the lights and lie down, Aaron said, asking my mother to sing outside the long pavilion and beside the ancient road.
I said, my mother’s throat is very painful, will you stop singing today?
Aaron said that he wanted his mother to sing outside the pavilion and along the ancient road.
I said, Mom is ill, Mom is very uncomfortable, Mom is ready to sing to you, okay?
Aaron said that he wanted his mother to sing outside the pavilion and along the ancient road.
I said, my mother’s throat is too sore to sing.
Aaron began to cry and said, “I want my mother to change her voice!” I said my voice could not be changed. Aaron cried and said, “Hit my mother!”
My heart is frozen when I hug the crying child.
He didn’t know what mean his mother was ill, he didn’t understand what mean his mother was in pain when she had a fever, and he didn’t understand that he couldn’t sing when his throat was sore.
He thought his mother refused his request. He was very angry and wanted to beat his mother.
There are still many such things, [I have thought about committing suicide with my children countless times, but I finally gave up.] Aaron’s mother told me in an interview.
[I will be 40 years old next year, maybe I can live to be 80 years old, then I still have 40 years to accompany him. If the final result is just to jump off the bridge with Aaron beautifully, then why should I deprive him of the happiness for 40 years?]
Our children
It just grows very slowly.
Although it is difficult to get a response from autistic children, it is not entirely impossible.
Sensen’s mother was the only parent we interviewed who said she was [fairly relaxed].
Although when the child was first diagnosed, Densen’s father drove past a homeless man and saw him rummage through the garbage can to eat. At that time, his mood collapsed and he thought whether his children would do the same in the future. Thinking of this, he could not continue driving, so he had to park his car on the side of the road, lie prone on the steering wheel and cry until his mood calmed down before moving on.
However, thanks to the efforts of their family, Sensen went to kindergartens, primary schools, junior high schools and then to higher vocational colleges like ordinary children.
Densen Bar Mitzvah
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Photo Source: Interviewee Provides
In January this year, Sensen also successfully took part in the college entrance examination and was admitted to a junior college not far from home. On the day when the score was given, Sensen’s mother felt happier than she was admitted to Sun Yat-sen University.
In fact, there are very few autistic people like the “lonely genius” in many movies. Even the achievements made by dense people are hard to imagine for the families of some autistic people.
Congcong, who is about the same age as Sensen, took intermittent classes in special schools for a short period of time after his diagnosis. Now, he is playing mobile phone or computer games at home every day, and he does not help with housework or farm work. Even during the busy farming season, he does not let Congcong’s mother worry.
But even Congcong’s mother, who keeps sighing, sometimes smiles.
Congcong’s mother reorganized her family a few years after her husband died and gave birth to two younger brothers.
After the birth of the youngest brother, Congcong’s mother was still in confinement and was lying in bed every day. Congcong took the initiative to bring food to his mother every day during that period of time, although he still said nothing.
When my younger brother was learning to walk with a walker, he almost slipped down the slope once, and Congcong pulled him back in time.
Congcong’s mother is actually quite satisfied with the current situation, at least Congcong is safe and healthy now.
Congcong is teaching his younger brother to recognize the car.
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Photo Source: Interviewee Provides
On more than one occasion, Xiao Hao’s father was described as “stupid”. When his wife mentioned having a second child, she refused.
He still hopes that one day Xiao Hao will have the ability to survive independently.
I think he is a very slow-growing child, five times or ten times slower than others, then he is only equivalent to a one-year-old child now.
At the end of the interview, Xiao Hao’s father shared with me the book by writer Zhang Wenliang < < Take a Snail for a Walk > >, which contained a passage:
God gave me a task to take a snail for a walk.
I can’t walk too fast. The snail has tried its best to climb and always moves a little bit every time.
I urged it, I threatened it, I blamed it, and the snail looked at me with sorry eyes as if to say:
The somebody else has done his best!
I pulled it, I pulled it, I even wanted to kick it. The snail was injured. It was sweating, panting and climbing forward.
It is strange why God asked me to take a snail for a walk.
[Oh, my God! Why? The sky was quiet.
[Alas! Maybe God will catch snails! ]
All right! Let go! Anyway, God doesn’t care, I still care about what?
Let the snail climb forward, I sulked behind.
Huh? I smell flowers. There is a garden here.
I felt the breeze blowing. It turned out that the wind was so gentle at night.
Wait! I hear birds chirping, I hear insects chirping, and I see how bright the stars are all over the sky.
Huh? Why didn’t you have these experiences before?
It suddenly occurred to me that I had made a mistake!
God told the snail to take me for a walk.
Sensen and his mother
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Photo Source: Interviewee Provides
I think of what dense mother said, [sometimes I don’t know whether I am accompanying my children or whether the children are accompanying me.]
After interviewing Sensen’s mother that day, I called my mother back and she confirmed it with me at the end: “Do you really not go home during the Qingming holiday?” ]
I hesitated for a moment and told her [hmm].
We may not give our parents as much company as an autistic child.
But the other two parents saw dense mother’s point of view, but also said to me:
In fact, I would rather the child’s wings were hard and he ran away.
In fact, there are not more autistic families we interviewed. Due to space constraints, we cannot put them in the article. However, I am very grateful to all the parents interviewed for their help.
We have also sorted out some common [misconceptions] about autism. If you don’t know this group, I hope you can take a little more time to have a brief look.
Is autism what? Does improper family education lead to autism?
Autism is also called autism. It is not just loneliness and loneliness. It is not a simple emotional or psychological problem, but a neurological development disorder.
Children with autism are usually diagnosed at the age of 18 months to 3 years old. It is manifested as language development disorder, interpersonal communication disorder and rigid repetitive actions. This is all because they are born with brain injury, which will not occur the day after tomorrow. The cause of the disease has nothing to do with family education.
At present, it seems that the influence of genetic factors tends to be clear, but the cause and pathogenesis of autism have not been finally determined. However, what is certain is that autism will not be contagious.
Is the incidence of autism high?
According to the report on the development of China’s autism (autism) education and rehabilitation industry, the current number of autistic patients in China may exceed 10 million, and the number of patients aged 0-14 may exceed 2 million, with an annual growth rate of nearly 200,000. That is to say, one in 113 children may be autistic.
According to reports in 2010, the prevalence rate of autism in some areas is 0.67% in Guangdong and 1.32% in Shenzhen. The prevalence rate in China is increasing year by year, with the proportion of boys being higher than that of girls.
Autistic children are all [children of stars], are they geniuses?
Not necessarily.
In response to this view, the interviewee Aaron’s mother said to us: Please don’t beautify the disease. Don’t say it’s “the child of the stars”.
In reality, The vast majority of autistic children have low intelligence and even varying degrees of mental retardation. Less than 10% of them may have some outstanding abilities, such as drawing, such as arithmetic. But this may only be because they have a unique attention to this matter and spend more time on it. Therefore, we cannot assume that they are all [geniuses].
Can autism be cured?
At present, there is no cure case. Moreover, autism has no specific drugs, only early detection and intervention. The younger the treatment age, the better the degree of improvement.
Can we do what for autistic children?
Sensen’s mother once said to us in the interview: Don’t say whether what loves or not, just treat them as human beings.
There is very little we can do. When we meet autistic children, we will not discriminate or exclude them.
If you can, please be more tolerant and caring.
This article has been reviewed by Zhuang Shili, Master of Neuroscience
Source of cover photo: www.hizy.net Genuine Photo Library
Responsibility: CC