” Wu Weihong, deputy chairman and secretary general of the Autism Rehabilitation Professional Committee of the Chinese Disabled Rehabilitation Association, asked at the end of an interview: mainstream society worships elites, But can you leave a little place for such children?” This article is from WeChat official account: Interface News (ID: wowjiemian), author: Jin Miao, head Figure from:” ocean paradise “stills
About two months ago, the mother of an autistic child called Jia Meixiang, the chief physician of Peking University Sixth Hospital, and asked her if she could arrange a place for her child.
This story is somewhat similar to the movie “Ocean Paradise”. One parent suffers from cancer, but the child with autism cannot be spared.
It seems inaccurate to call a child. He is 52 years old, but his brain is still in his childhood, unable to interact with others fluently. This is the first confirmed case of autism in China. At present, his father has passed away and his mother has terminal cancer.
Mother once said to Jia Meixiang that as long as there is a breath, she is unwilling to let the child leave her.
That kid is smart in one aspect. As long as Jia Meixiang tells any day, he can fluently answer the day of the week. But on the other hand, this is also considered a stereotyped behavior, an important clinical manifestation of autism.
April 2 is the World Autism Awareness Day. This year’s theme is: Work together to focus on and eliminate barriers to education and employment for people with autism.
Avoid all romantic imagination
According to the Diagnostic Statistics Manual of Mental Disorders issued by the American Psychiatric Association, autism is a developmental disorder with social communication and social interaction disorders, limited interests and stereotyped repetitive behaviors as the main clinical manifestations. This disease usually lasts a lifetime, the cause is currently unknown, and there are no drugs available for the core symptoms.
Autism is on the rise globally. In 2004, the prevalence rate in the United States was 1/166, but this number rose to 1/54 in 2020. There is no large-scale autism epidemic data in China, but according to the “Children of the Year 2020″ jointly issued by Beijing Union University, Beijing Autism Children Rehabilitation Association, and Peking University Medical Brain Health, edited by Jia Meixiang,”Development Disability Rehabilitation Industry Report” speculates that the domestic prevalence of autism is about 0.7% to 1%.
Autism is a neurodevelopmental disorder that begins in infants and young children. Some people call the child the child of the stars. Some parents resisted such a title, caring to beautify the suffering too brightly.
Each child with autism is diagnosed with a huge emotional and financial investment in the entire family, which changes the destiny of many parents.
Special education teacher Li Laoxi wrote in his self-selection “Notes of Special Education Teachers with Autism”, “I oppose all romanticized understandings of children with autism. They are not Children from extraterrestrials, they are all earthlings like us and they are weakened versions.”
According to the course of life, people with autism at each stage will face various problems: 0~3 years old, lack of professional intervention institutions; 3~6 years old, lack of special education institutions, and blank special education resources in normal kindergartens ; The special education resources of ordinary schools over 6 years old are scarce; after adulthood, the institutions are almost blank.
So the mother of the first child diagnosed with autism in China had to ask Jia Meixiang for help. Jia Meixiang is one of the earliest experts and scholars to diagnose and treat autism in China. In addition to diagnosis and treatment, she has been calling attention to the entire life of autistic patients for many years.
When a child is diagnosed with autism
A mother of a child with autism may only realize that her child is different from other children when the kindergarten teacher finds that her child does not answer the name.
Parents often start to take their children to seek medical advice, and the first problem they encounter may be an unclear diagnosis. Because there are as many as 300 million people between the ages of 0 and 18 in China, there are fewer than 500 child psychiatrists. “When you see a doctor in big cities such as Beijing, your child may be one year older or two years older.” Jia Meixiang said.
Picture source: Peking University Medical Brain Health
0~6 years old is considered to be the golden intervention for autism, although there is no drug available for the core symptoms of autism. However, professional intervention training and family guidance can greatly improve the lives of children with autism and help them integrate into society as much as possible.
The time window of 0-6 years old is so precious that it is fleeting, so that parents who miss this window of intervention will inevitably feel self-blame.
On the other hand, although parents have suffered a huge blow during this period, they still have enough intervention agencies to rely on compared to the life of the child after the age of 6.
According to statistics from the official website of the Disabled Persons’ Federation, as of the end of 2019, there were 9,775 rehabilitation institutions for the disabled nationwide, of which 2,238 provided rehabilitation services for children with autism.
Pantsev, vice president of “Rice and Xiaomi”, said that with the advancement of autism diagnosis and discovery technology and the lowering of thresholds around the world, the number of domestic autism intervention institutions has exploded.
Among the 2,238 domestic institutions providing rehabilitation services for children with autism in 2019, the designated institutions of the Disabled Persons’ Federation accounted for 35.7%, followed by private institutions, accounting for 34.8%.
The development of various autism rehabilitation institutions is closely related to the increased investment in rehabilitation assistance for children with autism by the Disabled Persons’ Federation. From 2009 to 2015, the China Disabled Persons’ Federation invested 468 million yuan in the intervention of poor autistic children. It was also in 2009 that the line graph of the number of rehabilitation institutions began to become steeper. In 2006, the number in China was actually 29.
“Every year, the state finance allocates a sum of funds to subsidize rehabilitation training for children with autism. In the past, families of children with autism needed to provide disability certificates to receive subsidies. Starting from the second half of last year, the state has liberalized the policy as long as Families who can provide a diagnosis certificate from a formal tertiary hospital can receive the rehabilitation training subsidy provided by the government. The state clearly stipulates that each city should provide a certain amount of subsidy for each family of autistic children every year, and local Disabled Persons’ Federations can supplement a part if they have funds. .” Jia Meixiang said.
But initially, this subsidy was limited to disabled children aged 0-6, which also made a number of autism rehabilitation institutions that emerged at that time focused more on the rehabilitation of young children.
According to the “Report on the Rehabilitation Industry for Child Developmental Disorders in 2020”, currently domestic organizations that carry out rehabilitation content for young children (2~8 years old) Accounted for 53.97%.
The market was once dominated by parent-built institutions
Because of the lack of children’s rehabilitation resources for a long time, parents of children with autism have to assume the responsibility of establishing their own rehabilitation institutions. Tian Huiping, the founder of Xingyu, the recognized first autism rehabilitation institution in China, is the parent of a child with autism.
“This group of parents started from their own children, and then based on their own children and young people, starting from solving their own practical difficulties, helping other children, among them, a group of people who have gone further established a business Institutions.” Pantsev said that without the participation of this group of parents, the number of domestic autism rehabilitation institutions would be much smaller.
Actually, Jiang Yingshuang, the founder of Rice and Xiaomi, also started to establish a parent exchange platform after the child Xiaomi was misdiagnosed as autism in 2009, and finally opened an offline child rehabilitation institution.
However, the rehabilitation institutions opened by the parents of the earliest children with autism were mostly private enterprises, with small scale and limited professionalism, and it was difficult to achieve profitability.
“In the very early stage, the institutions established by the parents of these children played a positive role in the parents of the same illness. Parents communicate with each other and the children make progress together.” said Liu Xiaoming, director of the Department of Education and Rehabilitation, School of Special Education, Beijing Union University .
Inevitably, these institutions are also facing the problems of insufficient energy and interest shifting of parents with autism.
“The first batch of institutions is more than 30 years old. They can’t stay in the same state forever, and one of the big problems they have encountered is that some of the children of parents who have opened rehabilitation institutions have entered adulthood. .“
The 21-year-old Dafu in the movie “Ocean Paradise” suffers from autism
After the age of 6, children with autism begin to face school enrollment problems, which is usually seen as a war. Some children successfully enrolled but often receive complaint calls from teachers, some toss around, and some parents resign. In this context, it is very difficult for parents of children with autism to continue to operate an autism organization.
“Parents’ interest points will also shift. Children are growing up. Parents are beginning to face how to integrate elementary school, how to find a job for 18-year-old children, or how to place or even take care of them. For parents of children with autism, the children are them. The main direction of their efforts is not particularly realistic for them to devote themselves to the operation of the organization.” Pantsev said.
“Mi and Xiaomi” conducted a family survey of children with autism during the epidemic. The results showed that nearly half of the families had their mothers quit their jobs to take care of their children after their children were diagnosed with autism.
“The doctor said that the sooner autism is discovered, the better. It can be treated before the age of six. As for what happens after the age of six, he did not say. Later, I was glad that I did not ask. I was really afraid that he would say’after six years old. You are used to’coming this sentence.’
——Cai Chunzhu “Dad Love Xihe”
This is a passage written by an autistic father in his book. For children with autism, 0~6 years old is the golden period for their intervention. “Parents of young children heard that intervention training is a rescue measure, and they are even willing to sell iron for training to their children. There is hope.” Jia Meixiang said.
At this time, hopes will also be shattered due to many factors. For example, after moving through multiple institutions, the function of autistic children has further deteriorated, or it is simply because the parents selected a top-ranked one in the web search results but not Reliable institution.
Sifted them out a little bit like a sieve
Due to the lack of professional rehabilitation specialists and behavior analysts in China, and the lack of established charging standards, the fees charged by autism organizations cannot be based on the effect of intervention. Jia Meixiang has heard of an intervention agency in Beijing with a monthly fee of more than 100,000. “Such rehabilitation costs are unbearable for most families. There must be a standard to limit the fees, and there must be no uncapped arbitrary fees, and a balanceHow much help can the measurement agency ultimately provide parents and children. ”
For autistic parents, the most important goal of early intervention is to enable children to enter general schools and integrate into society.
Therefore, the integration rate is an important indicator for evaluating children’s rehabilitation institutions. The integration rate is a count of how many children in rehabilitation institutions can enter kindergartens and elementary schools after receiving intervention. The integration rate of Peking University’s medical brain health is 48%. Although it does not seem to be much, it is a comforting number among the current domestic children’s rehabilitation medical institutions.
But for children with autism, even if they enter kindergarten, elementary school, or even middle school and university early, without the support of integrated education, these children will eventually be screened out like a sieve, and they will truly be able to accept it all the time. Education, even children receiving special education are very few.
Pan Zefu mentioned that after a parent of a child with autism found 20 kindergartens in Shenzhen, the children were not allowed to enter the kindergarten until the 21st one. “There are various reasons for rejection. I have no experience, I have to apply to the Education Bureau, and the quota is full, but Shenzhen is already the leading city in China.”
Integrated education means that schools strengthen their attention and support to special groups and make corresponding adjustments in school curricula, such as establishing gradient courses, setting up social classes, and teachers receiving corresponding training, so that classmates, teachers, and schools Together can accept this special group of children.
But it is not simple to promote integrated education. “Integrated education is actually a one-stop service. Children with autism have their particularities at all ages. Who should control these particularities? No matter, this is a very complicated thing.” Jia Meixiang said.
Although the Beijing Municipal Education Commission has proposed “zero rejection” during the compulsory education stage to ensure that children with disabilities can receive education. But when autistic children cannot even take care of themselves, such education is meaningless. “They can’t blend in at all. It’s actually called mixed. These children are mixed with normal children, but he can’t learn anything.”
Many autistic children are dropped out of school for various reasons in an environment where there is no integrated education, “disrupting the classroom”, “not following instructions”… For general schools, there is a lack of special education teachers at the moment. Or if the teacher has not received professional training, the school lacks the conditions for this group of children to study in the same class.
So the integration of some children ended in failure.
Special education institutions are believed to be able to accept these children so that they can go somewhere. But thingsIn fact, even in Beijing, there is only one special education school in each district, and the enrollment scale of these special education schools has not been expanded for many years. “One district may open one or two classes a year, and up to dozens of children can be enrolled. But the problem is that there are more than one hundred children with autism in one district.” Jia Meixiang said.
For private organizations, as children grow up, their strength becomes stronger, so that when stereotyped behaviors occur, it is difficult for teachers to control them, so there are not many such organizations. Some parents or grandparents can only take their children throughout the day and teach them little by little.
“The bigger the child, the harder it is. Some of them are more mobile and destructive. So as you get older, you have to have a dedicated person to accompany him.” Pantsev said.
Dami and Xiaomi recruited older children to go to the mountains for a week of pre-employment training last summer. According to Pantzev, there were more rehabilitation practitioners than children with autism. “It must be a loss. We just want to explore what older children can do?” The offline rehabilitation institutions of Rice and Xiaomi were established for 4 years. In a few years, younger children will grow up and need a place to go.
But whether it is young or older children with autism, if you want them to receive sufficient intervention, you must have enough rehabilitation therapists. Although in most people’s opinion, the effect of intervention in older children is not obvious.
The movie “Ocean Paradise”
According to the statistics of the China Disabled Persons’ Federation, in 2017, there were only 20,000 rehabilitation personnel engaged in autism education among the more than 2,000 designated institutions for rehabilitation and assistance for children with disabilities in China Multiple people. If all children with autism can get intervention, then the gap is 300,000.
Different from other institutions, autism rehabilitation institutions are more dependent on teachers. “If you can’t keep the teacher, your child’s training cannot continue.” The entry of capital, in Jia Meixiang’s view, has intensified the flow of rehabilitation practitioners.
“Especially when children’s rehabilitation institutions are mainly privately run, there will be no establishment, and teachers will be very mobile.” Jia Meixiang worries about the changes brought about by capital entry to the industry.
But on the other side of the coin, the entry of capital is conducive to the expansion of scale and helps the industry become more regulated. Pantsev is more optimistic, “Capital can use higher income to attract better teachers to better institutions, otherwise the industry can only operate on a low-level line.”
An institutional person who has participated in the investment of multiple medical institution projects said that although the current autism rehabilitation institutions are showing a market-oriented tendency, for investors, it is difficult for investors to collaborate with other investment targets in the field of autism rehabilitation. In addition, the charging standards of rehabilitation medical institutions make it possible to set up high-quality rehabilitation medical institutions in areas that are still limited to first- and second-tier cities. Due to the limitation of payment levels, relatively high-quality rehabilitation environments are mostly found in first- and second-tier cities. “Second-tier cities may be difficult to achieve.”
The 52-year-old child at the beginning of the story successfully entered an institution that can care for older children with autism.
Wu Weihong, deputy chairman and secretary general of the Autism Rehabilitation Professional Committee of the Chinese Disabled Rehabilitation Association, asked at the end of an interview: The mainstream society worships elites, but can we also reserve a place for such children?
This article is from WeChat official account:Interface News (ID: wowjiemian)< span class = "text-remarks">, author: Jin Miao