China News Service, Beijing, September 27 (Liu Huan) You may have heard of a disease called Asperger's syndrome.
As you may have seen, they are not good at communicating and may be gifted in some ways.
But you don't know, they need more attention.
Lack of communication, strange behavior, what's wrong with my child?
After school, Wang Min saw that her daughter came out of the school crying again.
The child said that a classmate not only tore off her favorite hairpin, but also pushed her down, pressed her on her body and beat her.
When Wang Min asked her classmate what her name was and what she looked like, her daughter could only say, "That child has two eyes and one nose."
Bullying is not the first time, and it is not the first time that my daughter can't recognize or remember who the other party is.
In 2018, Wang Min's 6-year-old daughter was diagnosed with Asperger's syndrome, a neurodevelopmental disorder characterized by abnormal social interaction, limited, and abnormal patterns of interest and behavior.
She has little communication, only plays with her mobile phone, and rarely pays attention to children. Wang Min noticed her difference when her child was 4 years old. "At the time, I thought she had more personality. Later, I found out that she is blind and doesn't know others at all. She said that her daughter is now in the fourth grade, she only knows one classmate, and she often admits her mistakes.
The school's teacher also reported to Wang Min that her daughter did not recognize the teacher and classmates, so she sat in her own seat and did handicrafts in class. "She doesn't listen to the class, and every day she comes back from school, she brings me a work."
(Wang Min's daughter's handicrafts, photo courtesy of the interviewee)
Wang Min said that although her daughter has social barriers, she is very talented in handicraft and painting, and can do handicrafts and animation. "We don't know any of these, we have never taught her, and she doesn't know where to download the software. Often something can be conjured up in seconds."
In her eyes, her daughter is emotional, perceptive, kind and sensible. "My child is so good, how can he get sick?" Since the diagnosis, Wang Min has never been able to accept the result.
The 28-year-old Yu Jing was also at the same age as Wang Min's daughter, and realized that he was different from his peers. "At that time, I felt that I was separated from everyone." Yu Jing recalled that when he was a child, he always stood outside the crowd and observed The animals and plants in the surrounding environment are rarely integrated into the children's game circle.
The parents didn't care at first, until a few years later, Yu Whale's emotions and behavior became more and more strange.
Once, after a quarrel between Yu Jing and his father, because he touched a book of his own, Yu Jing washed the book under the tap and washed the book, "I thought at the time that someone else had touched me. If the thing is dirty, either wash it quickly, or don’t want it anymore.”
Her parents took her to several hospitals, and the doctors all said that Yu Jing had a tendency to have high-functioning autism.
Because it did not affect learning, parents did not pay attention.
It wasn't until she entered middle school and was bullied by the school, "I don't know how to wink or hold a group. This is the original sin." Only then did her parents realize the seriousness of the problem.
Difficult to Diagnose, Misunderstood, What Is Asperger's Syndrome?
Asperger's syndrome (AS) belongs to the autism spectrum disorder (ASD), and its clinical manifestations mainly include social interaction disorder and stereotyped behavior.
The etiology is not yet clear, but it takes time for the child to experience social life before it manifests itself.
Compared with typical autism, patients with Asperger's syndrome do not have obvious language and intellectual disabilities.
Ma Yang, deputy director of the Children's Health Center of Beijing Children's Hospital affiliated to Capital Medical University, told Chinanews that the diagnosis of Asperger's syndrome has now been cancelled in clinical diagnosis.
“The diagnosis of this disorder has been controversial. High-functioning autism and Asperger’s syndrome have similarities and differences. Asperger’s syndrome has been removed from the Diagnostic and Statistical Manual of Mental Disorders (DSM-V) Autism spectrum disorder (ASD).
Ma Yang said that both diseases are symptomatic diagnoses, but the diagnosis of Asperger's syndrome is more difficult. "We need to be cautious in making diagnosis now. Some doctors may overdiagnose, and some doctors do not diagnose directly."
It is reported that due to the lack of specific diagnostic indicators and the lack of a "gold standard" for psychological evaluation, Asperger's syndrome is either missed or diagnosed as ADHD, emotional behavior disorder or other psychological disorders.
(Wang Min's daughter's painting, photo courtesy of the interviewee)
In addition to the difficulty of diagnosis, the headache for many parents is that there is little domestic data on autism spectrum disorders.
In 2015, Zhang Zhiguang's 2-year-old son was diagnosed with autism.
However, when he got the confirmed medical records, he was at a loss.
"It was 7 years ago, and it was difficult to get accurate information on how to treat diseases in China," Zhang Zhiguang recalled. During that time, he was restless and unwilling to eat. The fear of unknown diseases made him lose 10 pounds in a month. .
At the same time, many parents still have cognitive misunderstandings.
"They think that children who are sick are geniuses, but only some people are intelligent, and the children just have special interests," said Yang Mengli, who works in the special education industry. She has seen too many bizarre families and treatments. "Some parents I think it will be good to wait for the child to grow up, and some parents take their children to do brain waves and other treatments that have not been scientifically verified."
In the face of adversity, they decide to do something
According to a December 2021 report from the Centers for Disease Control and Prevention's (CDC) Morbidity and Mortality Weekly Report (MMWR), based on 2018 statistics, one in 44 8-year-olds (2.3%) were Confirmed autism spectrum disorder.
After the diagnosis, the common problem faced by autistic families is the cost of treatment.
According to relevant statistics, among the 8,103 families in the country, the average rehabilitation cost of each autistic family reaches 6,957 yuan per month.
In other words, about 80,000 yuan will be spent on autism every year.
Yang Mengli said that most hospitals now conduct diagnosis, and treatment is mainly carried out by institutions.
In the four contexts of institution, family, school and society, improve the social and cognitive impairment of patients through social skills, cognitive behavior, language therapy and other methods.
"But it's important to note that there is no cure or 'cap removal', and lifelong interventions should be targeted to maximize their quality of life," she said.
Faced with the dilemma, the families decided to do something about it.
Wang Min encourages her daughter to continue to develop her artistic talents and strengthen physical training to promote her neurodevelopment. "I want to take her on a study trip, such as going to Jingdezhen, Jiangxi to learn ceramics firing." She said that her biggest wish now is her daughter Being happy, "I hope she can work and live happily in the future and be a useful person."
Yu Jing began to do online knowledge of Asperger's syndrome, and more and more parents consulted her.
The counseling often reminded her of herself, "I understand those kids so well, it's like seeing myself."
Zhang Zhiguang and the fathers of two other sick children established an autism assessment and intervention platform called Alsolife. While conducting more scientific research on autism, it is also committed to systematically popularizing autism knowledge to more people. "We're doing a 'new parent encyclopedia' right now."
(Wang Min's daughter is painting, photo courtesy of the interviewee)
After coming into contact with more and more families, he began to worry about the social problems of autism - what will happen to the child when the parents leave?
Zhang Zhiguang told Chinanews.com that this has become a common problem. "We hope that for this group, there will be a community organization that supports them in the future, so that they can live well." (At the request of the interviewee, some of the characters in the article are pseudonym) (end)