Per reporter: Ding Zhouyang Zhu Peng Per editor: Zhang Haini
If it were not for the severe situation of the new crown epidemic prevention and control in Shanghai, Yan Feng, a professor at Fudan University, would not have announced his family affairs to the public.
On 2 April, World Autism Day ("Autism"), a special group also known as the "Children of the Stars". Every year on this day, Yan Feng, who has nearly 5.5 million Weibo followers, will popularize autism-related knowledge on his Weibo and call on the society to understand and care for this special group. Before this, the public did not know that Yan Feng himself was the parent of autistic patients.
Image source: Weibo screenshot
Since March 29, the number of new local confirmed cases in Shanghai has exceeded 100, the number of new daily infections of asymptomatic infected people has continued to increase, and the number of new asymptomatic infected people in a single day on April 2 has exceeded 7,500, a new high. Those who show positive in the nucleic acid test screening will enter the designated isolation point for isolation.
This "new urgency" makes Yan Feng's previous concerns about family privacy "trivial." "The developing epidemic has made everyone face the possibility of being isolated, and for autistic patients who cannot take care of themselves, entering the square cabin for isolation without the company of their families is unimaginable for the harm to the patient and the trouble caused by the patient to the isolation site." Yan Feng told the "Daily Economic News" reporter.
He sent a long microblog, "I want to discuss with you, children, autistic people or other special people who can not take care of themselves, what are the more feasible targeted measures?" For example, can I quarantine at home with the consent of my neighbor? Or quarantine at the hotel at your own expense when accompanied by a parent? Or the caregiver accompanies him into the cabin for isolation? ”
"Separating people with autism (from) their familiar caregivers in an unfamiliar environment is highly likely to cause new psychological trauma and lead to tragedy." If this outcome does occur, who is responsible? He Rihui, a domestic psychiatric and psychological medicine expert and the head of the Guangzhou Qingri Psychosomatic Specialist Outpatient Department, said in an interview with the "Daily Economic News" reporter that "the humanized isolation measures for people with special mental disorders are not optional, but very necessary."
From acceptance to understanding
Autism is a lifelong developmental disorder
"My child is now 19 years old and an older autistic." On the other end of the phone, Yan Feng calmly told the Reporter of the Daily Economic News. More than a decade ago, an autistic child was a fact that yan feng's family simply could not face and accept. "We refuse to believe, we refuse to admit it. My children weren't quite visible at first, and the younger they were, the more they were like other children, and in some ways they seemed to develop earlier than others. But slowly, the difference came out. ”
In terms of language and behavior, Yan Feng's children showed completely different cognitions. The symptoms of this kind of social disorder in people with autism are varied, some patients cannot speak, and some can speak but cannot talk to them at all. As children grow, barriers to cognitive development can also lead to problems with physical coordination and problems such as inability to learn and get along with people normally.
Around the time the child was five or six years old, Yan Feng's child was diagnosed with autism. "After the diagnosis, we still tried to correct it, and while attending primary school, we participated in various rehabilitations, which was the most tiring stage. This group is difficult to keep up with in ordinary schools without the assistance of special professionals, and it will be subject to various incomprehensions from teachers and parents. ”
After stumbling through kindergarten and stumbling through primary school, Yan Feng has gradually accepted reality: this is a lifelong developmental disorder that accompanies children, and its core symptoms cannot be treated, but through the unremitting efforts of the family and society, through learning and exercise, children can strive to master some of their own life ability. "But I think the vast majority of parents have to take care of them for life, there is no doubt about this, and there are very few autistic people who can take care of themselves."
And when the parents are old, or even die, who should guard the autistic children left behind? The movie "Ocean Paradise" staged this heart-wrenching story, in which the terminally ill father devoted everything he could to his 21-year-old son to find a way to survive after his death.
Accompanying autistic children for more than ten years, Yan Feng has a personal experience of the progress of the surrounding environment. "The whole society has a higher and higher awareness of the autism group, and in the past, everyone still understood autism as a genius in the film and television drama "Rain Man" and "The Big Bang Theory", and now this stereotype is getting less and less." Various private autism help institutions in China have also developed rapidly, and the progress is obvious. ”
Stills from "Rain Man". Image source: Douban
Stills from The Big Bang Theory. Image source: Douban
Yan Feng took his adolescent children to Angel Zhiyin, a public welfare learning institution for autistic patients in Shanghai, which is a non-governmental organization set up by the famous Shanghai conductor Cao Peng and one of his daughters Cao Xiaoxia to provide various activities and courses for autistic people. At present, due to the severe situation of the epidemic, Yan Feng and his children continue to participate in various courses of the above institutions through online classes at home.
Isolate groups with mental illness
Creates more problems than solves
Domestically, people with autism have a less depressing-sounding name — "Children of the Stars."
He Rihui told the "Daily Economic News" reporter that the two core symptoms of autism patients are social disorders and communication disorders. "He seems to be right next to you, but he's actually far away from you. He lived in his own world, especially lonely, like a lonely twinkling star in the distant sky. ”
Autism, also known as autism or autism disorder, is a representative disease of generalized developmental disorders. According to incomplete statistics, the number of autistic patients in China currently exceeds 10 million, of which more than 2 million are children under 14 years old. According to CCTV, the current prevalence of autism in children on the mainland is about 1%.
Once upon a time, these groups, as easily overlooked as the stars, were once invisible to the system of public discourse. In 2010, the release of the movie "Ocean Paradise" brought this group to the attention.
Stills from Ocean Paradise. Image source: Douban
A large part of the film's story prototype comes from Tian Huiping and her son. The resilient mother threw herself into an area that was almost blank in the country after her son was diagnosed with autism. In 1993, Tian Huiping quit her university job and founded China's first autism service agency, the Beijing Xingxingyu Education Research Institute. This year, only 3 authoritative doctors in China had diagnosed autism.
The agency is still functioning. On April 2, the Daily Economic News reporter contacted Wang Xiuqing, who joined Xingxingyu at the beginning of its establishment, and she is currently the director of Xingxingyu's teaching department.
Wang Xiuqing told reporters that with her observation in the past 29 years, 80 to 90% of autistic patients in China need 24-hour close care. "If he is a person with a boarding experience, such as an independent university, it may be easier to adapt to isolation, but the challenge is also very large, and it is very rare; for patients who have not experienced this experience, it is not difficult to isolate without the company of their families, (but) it is completely impossible."
"First of all, a lot of patients can't stay." Wang Xiuqing borrowed the case of Tian Huiping's son for comparison, "Teacher Tian's children belong to Kaina autism, but others are particularly gentle and emotionally stable. I often bring him to my house, and he may be able to be alone, but he must also have the support of his family or professionals. For some patients with poor ability, the time they can wait alone is limited, it may be a few minutes. ”
In his communication with Yan Feng, he also expressed similar concerns: "Even if he goes to the isolation point, it is difficult for the medical staff to understand what he wants to express and does not understand what he wants; on the contrary, he cannot understand the other party." At that time, I didn't know what was going to happen. Isolating them alone will not only not solve the problem, but also add chaos to society. ”
"It is also unfair for healthcare workers to travel alone to centralized isolation points. People with autism are easily impulsive in their emotions and behaviors, and may start with medical personnel after communication problems, which is an additional blow to the already tight medical resources. He Rihui said.
Teachers and children of Xingyu Educational Institution. Image source: Courtesy of the interviewee
14 days of isolation
It may ruin more than a decade of hard work
Tian Huiping has attracted the attention of many parents of autistic children because of her exemplary companionship. But she also said in a previous interview that not all children with autism will grow up to be self-controlled, patient and clean-behaved people like their children.
"To be an autistic person like this, his whole growth process must be 0 errors. Even the people around him can't make mistakes when they interact with him. Because any wrong practice of the people around him is depriving the child of the opportunity to progress. Tian Huiping said.
Zero mistakes mean that everything is in order and everything is carried out according to the rhythm of life that autistic people have accepted. When to eat, rest, go out, sleep, all the details of life are best to be smooth like a quiet lake, no ripples.
Wang Xiuqing shared a story of her experience with the Daily Economic News reporter. A father, who was returning from Beijing to his hometown in Shandong to deal with a family emergency, entrusted his 18-year-old autistic son to Wang Xiuqing for one night. The boy had attended an ordinary primary school, and before that, he was already very familiar with Wang Xiuqing. After coming to Wang Xiuqing's house that night, the boy was very anxious, so Wang Xiuqing's husband stayed with him in the bedroom until 12 o'clock in the middle of the night to go to the toilet, and when he came out, the bedroom door was locked from the inside.
"He screamed inside and jumped on the bed. We went crazy and luckily found the keys in the end. When the door opened, we found that he had opened the window. Our home is on the 4th floor and there is no protective netting. ”
Changing the environment for autistic people is to throw stones at the surface of the lake that is not easy to calm. "Even children with good behavioral ability need to have familiar family members and professionals to help them arrange a fixed pace of life according to their characteristics." For example, what time to write homework, when to eat, what to do next. If you send it to quarantine, it is extremely difficult. Wang Xiuqing said.
When the reporter asked He Rihui whether an autistic patient who has been well taken care of since childhood has better self-adaptability, He Rihui said that his family has become a source of stable security for these patients, and when they are sent to isolation, the possibility of forming a huge trauma is extremely high. When the isolation is over, the virus is indeed gone, but the symptoms of autism are likely to worsen sharply or even worsen.
"You have to know how hard and painful it is to protect an autistic person growing up healthy and smooth, and it may be the careful care of multiple families for more than ten years." For the patient's relatives, it can be said that it was destroyed. How can they bear it? He Rihui said.
Teachers and children at Xingyu Educational Institution. Image source: Courtesy of the interviewee
Psychiatric and psychological medicine expert advice:
Parents should be allowed to accompany them to quarantine
Two years ago in Wuhan, an article documenting 110 days of autistic families fighting the virus in Wuhan resonated with the public. Two years later, Shanghai is also facing a severe epidemic prevention and control situation. In two years, the virus has changed, and so has people's needs. In the discourse system of the majority, infection and isolation are a reasonable combination of words; but there are no absolutes in everything, and the public needs to see the minority behind the majority, because these minorities are also living individuals.
According to He Rihui, many patients with mental and psychological disorders, including autism, isolated alone will exacerbate their negative emotions, and in negative emotions, their thinking will also show a negative state, and it is easy to fall into a vicious circle. "In this case, it can lead to aggravation of the disease and even tragedy, such as suicide."
In He Rihui's view, not only autistic patients, but all patients with mental disorders must be accompanied by someone if they need to be isolated during the epidemic. "It shouldn't be a request from the family, but rather a principle that should be made by the relevant agencies."
"Separating people with mental disorders from their families is originally intended to reduce the spread of COVID-19.) However, judging from the current situation that most of the mild diseases of Omikerong under the protection of vaccines, the cost of two people being infected at the same time is less than the cost of being isolated by patients with mental disorders. The lesser of two evils, so family members must be required to accompany them. If this can become a consensus and be strictly enforced, we must of course consider it more carefully, such as the need to sign a legal instrument of voluntary responsibility regardless of the choice of the family. He Rihui thought.
In the Weibo that first disclosed family affairs, Yan Feng proposed three feasible plans once they needed to be isolated: the whole family was isolated at home, the whole family went to the isolation hotel at their own expense, and he and his children went to the cabin together. He said he didn't think the third option was a good option, or even a possible option, but wanted to hear from everyone. However, in these three plans, Yan Feng firmly placed the child next to him.
"Hopefully, this issue will attract the attention of society and the government." How to help special groups of people, including people with autism, and more ordinary children who may be separated from their parents, protect their physical and mental safety, and avoid family disasters and social problems that are greater than the Infection of Omicron. Yan Feng said, "We must overcome the epidemic, we must overcome the epidemic, and we must also protect our children and our humanity in this process."
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