If it weren’t 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 April 2, World Autism Day (“autism”), this special group is also known as “children of the stars”. Every year on this day, Yan Feng, who has nearly 5.5 million Weibo followers, would popularize autism-related knowledge on his Weibo, calling 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 a person with autism.
Image source: Weibo screenshot
Since March 29, the daily number of new local confirmed cases in Shanghai has exceeded 100, and the daily number of new asymptomatic infections has continued to increase overall. On April 2, the number of new asymptomatic infections exceeded 7,500. A new high. Those who are 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 makes everyone face the possibility of being quarantined, and for autistic patients who cannot take care of themselves, entering the shelter without the company of their family members will harm the patient and bring the patient to the isolation place. The trouble is unimaginable.” Yan Feng told the “Daily Economic News” reporter.
He posted a long Weibo, “I want to discuss with you, what are the feasible targeted measures for the infection of children, autistic patients or other special groups who cannot take care of themselves? For example, can it be possible with the consent of the neighbors? Quarantine at home? Or quarantine in a hotel at their own expense with the escort of a parent? Or perhaps a caregiver escorts him into the cabin for quarantine?”
“Isolating autistic patients (from) their familiar caregivers in an unfamiliar environment is very likely to cause new psychological trauma and lead to tragedy. If this happens, who will be responsible?” He Rihui, an expert in psychiatry and psychiatry and the head of Guangzhou Qingri Psychosomatic Clinic, said in an interview with a reporter from “Daily Economic News”, “Humanized isolation measures for people with special mental disorders are not optional, but very necessary. “.
never accept to understand
Autism is a lifelong developmental disability
“My child is 19 years old now and is an older autistic patient.” Yan Feng told the “Daily Economic News” reporter calmly on the other end of the phone. More than ten years ago, an autistic child was a fact that Yan Feng’s family could not face and accept. “We refused to believe it and refused to admit it. My child didn’t really see it at first, the younger he was, the more he was like other children, and even seemed to develop earlier than others in some aspects. But slowly, the difference came out.”
In language and behavior, Yan Feng’s children showed completely different cognition. Symptoms of this social disorder in autistic patients are varied. Some patients cannot speak, and some can speak but cannot communicate with them at all. As a child grows, cognitive impairment can also lead to problems with physical coordination, inability to learn normally, and difficulty getting along with others.
When 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. While studying in elementary school, we participated in various rehabilitation programs. This is the most tiring stage. If this group does not have the assistance of special professionals in ordinary schools, it is difficult to keep up, and There will also be various misunderstandings from teachers and parents.”
After finishing kindergarten and elementary school with bumps and bumps, Yan Feng has gradually accepted the reality: this is a developmental disorder that accompanies children for life. Its core symptoms cannot be treated, but through the unremitting efforts of the family and society, through study, Exercise, let the child try to master some life self-care skills. “But I think most parents have to take care of them for life. There is no doubt about this. There are very few autistic patients who can take care of themselves.”
And when parents get old, or even pass away, who should take care of their autistic children? The movie “Ocean Paradise” staged this heart-wrenching story, in which a terminally ill father spends everything he can to find a way for his 21-year-old son 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. In the past, people used to understand autism as a genius in the film and television drama “Rain Man” and “The Big Bang Theory”. Now this stereotype is becoming less and less. Domestic Various private autism assistance organizations have also developed rapidly, and the progress is obvious.”
“Rain Man” stills.Image source: Douban
“The Big Bang Theory” stills.Image source: Douban
Yan Feng took his adolescent children to a non-profit learning institution for autistic patients in Shanghai, Angel Confidant. Patients are offered a variety of activities and classes. At present, due to the severe epidemic situation, Yan Feng and his children continue to participate in various courses of the above-mentioned institutions through online courses at home.
Isolation of mentally ill groups
creates more problems than it solves
In China, autistic patients 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 barriers and communication barriers. “He seems to be right next to you, but in fact he is far away from you. He lives in his own world and is very lonely, like a single star twinkling in the distant sky.”
Autism, also known as autism or autistic disorder, is a representative disease of pervasive developmental disorder. According to incomplete statistics, there are currently more than 10 million autistic patients in China, including more than 2 million children under the age of 14. According to CCTV, the current prevalence of autism among children in my country is about 1%.
Once upon a time, these groups, which are as easily overlooked as stars, were once hidden in the public discourse system. In 2010, the release of the movie “Ocean Paradise” brought this group to the attention.
“Ocean Paradise” stills.Image source: Douban
A large part of the prototype of the film’s story comes from Tian Huiping and her son. The tenacious mother plunged into a field that was virtually blank at the time when her son was diagnosed with autism. In 1993, Tian Huiping resigned from her university job and founded the first autism service organization in China, the Beijing Xingxingyu Education Research Institute. This year, only 3 authoritative doctors in China have diagnosed autism.
The institution is still in operation. On April 2, a reporter from “Daily Economic News” contacted Wang Xiuqing, who joined Stars and Rain at the beginning of its establishment. She is currently the director of the teaching department of Stars and Rain.
Wang Xiuqing told reporters that based on her observation in the past 29 years, 80 to 90 percent of autistic patients in China need 24-hour close care. “If he is a person with boarding experience, such as someone who has gone to college independently, it may be easier to adapt to isolation, but the challenges are also very large and very few; for patients who have not had such experience, it is necessary to Isolation alone with family members is not called difficulty, (but) it is completely impossible.”
“First of all, many patients can’t stay.” Wang Xiuqing borrowed the case of Tian Huiping’s son for comparison, “Mr. Tian’s child belongs to Kaina autism, but he is very mild and his mood is relatively stable. I often take him to my house, and he It may be possible to be alone, but it must also be supported by family members or professionals. For some patients with less ability, the time they can wait alone is limited, maybe just a few minutes.”
In the 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, nor what he wants; on the contrary, he also cannot understand the other party. At that time, I just don’t know what’s going to happen. Isolating them alone will not solve the problem, but it will also add chaos to society.”
“It is also unfair to medical staff for autistic patients to go to the centralized isolation point alone. Autistic patients are prone to impulsive emotions and behaviors. If there is a problem with communication, they may start hands with medical staff. This is for the already nervous. Medical resources are an additional blow.” He Rihui said.
Teachers and children of Stars and Rain Educational Institution.Image source: Photo courtesy of the interviewee
14 days of quarantine
It may ruin more than ten years 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 into people with strong self-control, patience and clean behavior like their own children.
“To become such an autistic patient, his entire growth process must be zero mistakes. Even when people around him interact with him, they can’t make mistakes. Because any mistakes made by people around him are depriving him of progress. opportunity.” Tian Huiping said.
Zero mistakes means order and everything goes according to the rhythm of life that people with autism have accepted. When to eat, rest, go out, sleep, all the details of life should be as smooth as a quiet lake without ripples.
Wang Xiuqing shared a story of her experience with the “Daily Economic News” reporter. A father entrusted his 18-year-old autistic son to Wang Xiuqing to take care of him for one night because he had to return to his hometown in Shandong from Beijing to deal with urgent family matters. The boy went to ordinary elementary school, and before that, he was quite familiar with Wang Xiuqing. After arriving at Wang Xiuqing’s house that night, the boy was very anxious, so Wang Xiuqing’s husband stayed with him in the bedroom until 12:00 in the middle of the night to go to the toilet. After coming out, the bedroom door was locked from the inside.
“He was screaming inside and jumping on the bed. We were in a panic, but we finally found the key. When the door opened, we found that he had opened the window. Our house is on the fourth floor and there is no protective net.”
For autistic patients, changing the environment is like throwing stones at the surface of a lake that is finally calm. “Even children with better behavioral abilities need the help of familiar family members and professionals, and arrange a fixed life rhythm according to their characteristics. For example, when to do homework, when to eat, and what to do next. If It is extremely difficult to be sent to isolation,” Wang Xiuqing said.
When the reporter asked He Rihui “whether an autistic patient who has been well cared for since childhood has better self-adaptation ability”, He Rihui said that family members have become the source of these patients’ sense of stability and security. The potential for massive trauma is extremely high. When the quarantine is over, the virus is indeed gone, but the symptoms of autism are very likely to increase sharply or even worsen.
“You have to know how hard and painful it is to protect an autistic patient to grow up healthily and steadily. It may be the careful care of multiple family members for more than ten years. For the patient’s relatives, it can be said to be destroyed. How can they Can you stand it?” He Rihui said.
Teachers and children of Stars and Rain Educational Institution.Image source: Photo courtesy of the interviewee
Psychiatry experts advise:
Parents should be allowed to accompany quarantine
Two years ago in Wuhan, an article documenting the 110-day fight against the virus by a Wuhan autistic family resonated with the public. Two years later, Shanghai is also facing a severe epidemic prevention and control situation. In the past two years, the virus has changed, and so have people’s needs. In the discourse system of most people, infection and isolation are a pair of reasonable combination words; but nothing is absolute, and the public needs to see the minority behind the majority, because these minority are also living individuals.
According to He Rihui, for many patients with mental and psychological disorders, including autism, isolated isolation will aggravate 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 an exacerbation of the condition, or even a tragedy, such as suicide.”
In He Rihui’s view, not only autistic patients, but all mentally disabled patients must be accompanied by someone if they need to be isolated during the epidemic. “It shouldn’t be a request from the family, but the agency should make it a principle.”
“The original intention of separating mentally ill patients and their families is to reduce the infection of the new crown (virus). However, judging from the current situation that Omicron is mostly mildly ill under the protection of vaccines, the cost of simultaneous infection of two people is less than that of patients with mental disorders. The price of being isolated alone. The lesser of two evils, so family members must be required to accompany them. If this can become a consensus and strictly enforced, we must of course consider it more carefully. For example, no matter what the family members choose, they need to sign and voluntarily undertake Liability legal documents, etc.” He Rihui believes.
In the Weibo, which disclosed family affairs for the first time, Yan Feng proposed three feasible solutions once isolation is required: the whole family should be isolated at home together, the whole family will go to the quarantine hotel at their own expense, and he and his children will go to the cabin together. He said he didn’t think the third option was a good option, not even a possible option, but still wanted to hear everyone’s opinions. However, in these three schemes, Yan Feng firmly placed the child by his side.
“Hopefully this issue will attract the attention of the society and the government. How to help special groups including autistic patients and more ordinary children who may be separated from their parents, protect their physical and mental safety, and avoid the occurrence of Biomia Kerong is infected with bigger family disasters and social problems.” Yan Feng said, “We must overcome the epidemic, we must be able to overcome the epidemic, and we must protect our children and our humanity in the process.”
