2 April is World Autism Day. This is set to promote research and diagnosis of autism and to call on the public to pay more attention to and understand the plight of the autistic community.
Autism, also known as autism, is a familiar and inexplicable word for most people. This is a class of disorders of generalized neurological and mental development that occur in early childhood. It is mainly manifested as different degrees of social interaction disorders, speech development disorders, narrow interests and repetitive stereotyped behavior patterns.
Its cause is still unknown, and there is no effective medical means to cure it. According to the survey data of the "Report on the Development of China's Autism Education and Rehabilitation Industry", there are currently more than 10 million autistic patients in China, of which more than 2 million are children aged 0-14 years old, and they are growing at a rate of nearly 200,000 per year.
Contrary to the setting of "autistic people are geniuses" in film and television dramas, less than 10% of autistic patients have different talents than ordinary people, and most autistic patients have a variety of pathological characteristics. Young-age people with autism undergo rehabilitation, but when they grow up and leave the institution or are turned away from school, they face a situation of nowhere to go.
These families and children seem to have become "invisible people" in society. In other words, when they grow up, autistic people gradually become "invisible people".
Xiaoice: The growth history of a typical autistic patient
Xiaoice is one meter and eight meters tall, weighs about 200 pounds, and has a strong physique, which looks no different from other boys from the outside. After entering puberty, Xiaoice, like other boys, will have a cute impression on girls.
Walking on the road, whenever Xiaoice meets a girl, he will always look at the girl twice and stare straight at it. He didn't know how to hide his inner love, and he didn't understand why the girl would run away from him.
Xiaoice more adolescent troubles. Mother Wei Xueying had more awkward moments.
"When the child was young, he didn't encounter any embarrassing things, and now that he is older, we have encountered more embarrassment." Wei Xueying could understand Xiaoice's physiological reactions, but it was difficult to control his behavior.
"When children are young, they are very energetic and beautiful." This is Wei Xueying's description of Xiaoice. But what surprised Wei Xueying was that when Xiaoice was more than a year old, she still didn't open her mouth. After arriving at the hospital, Xiaoice was diagnosed with "autism".
"But he doesn't look like a problem kid at all!" Wei Xueying and her husband constantly deliberated on the cause of Xiaoice illness and constantly overturned these ideas. Numerous studies have shown that the causes of autism spectrum disorder are comprehensive, not a single cause.
After accepting the reality, the husband was responsible for the children's medical expenses and the living expenses of the family, and Wei Xueying decided to quit her job and concentrate on accompanying Xiaoice to do sensory training. In the families of people with autism, such a division of labor is common. According to the "China Autism Parent Demand Questionnaire", 52.4% of families have one person who gives up his job to take care of anarcissistic children, and most of them are given up by their mothers.
The "particularity" of the Xiaoice makes people around pay special attention. "When people stopped him and frightened him, he didn't dare to move, so he hid aside." Seeing such a situation, Wei Xueying's heart tightened and decided to transfer her child to a special education school.
Since then, home, school, rehabilitation center, Xiaoice lived a "three-point and one-line" childhood.
What made Wei Xueying feel relieved was that Xiaoice learned to dress and eat at a normal age. But fine movements are a big problem, like tying shoelaces. Wei Xueying taught Xiaoice the best way to tie their shoes, and the only way to do it was to use a stupid method - through repeated practice to become a mechanical memory.
Xiaoice doing housework at home Photo: Qilu Evening News
In 2020, Xiaoice has not found a job since graduating from a special education school. Some of the students who graduated together went to the cake shop to work as pastry chefs, and some went to the company to work as security guards. Wei Xueying said: "The point is that he now has his own opinion, and he doesn't like to do these jobs. "Xiaoice loves to play with computers, he wants to learn programming, and the idea is even stronger this year. But this made Wei Xueying feel troublesome.
Wei Xueying, 46 years old, knows that autism will accompany Xiaoice for the rest of her life. The mother's solution is to let Xiaoice learn more skills, from being able to take care of themselves to being able to stand on their own. Talking about this topic, Wei Xueying was a little heavy: "In the future, I hope he can find a job." When we are alive, we can take care of him. But what should he do after we are gone? ”
Sissi: A child with autism who attends a regular school
"Medically, I was diagnosed with 'autism spectrum disorder', but I wasn't happy with the name because I didn't feel 'lonely.'"
"I feel harsh in low-frequency sounds, which frighten me, and you can barely hear them; some things that you think are not laughs, but I indulge in them and laugh endlessly..."
"I like to study computers, try to redo my computer, and after n failures, I finally managed to install the Windows xp system, which made me feel particularly accomplished."
On December 4, 2021, 11-year-old Sixi "wrote" this "Letter to the 20th Class", and the neat and immature font filled the composition paper, telling his slight differences in every word. This was originally a homework assignment, and her mother Liang Ying had a whim to complete a science popularization about autism.
The letter was written by Liang Ying in the tone of his son, and then copied by Xi xi with one stroke, and he did not have enough language skills. Before writing the letter, Liang Ying tried to explain the reason for the letter, and she felt that Sisi should be understandable.
Xi xi's letter to the students Photo: People's Daily Network
The ending was a pleasant surprise. The teacher read the letter in the class, and also let the whole class write a reply to Sisi, some parents were moved to tears after hearing about it, and some children's mothers thanked Sisi in the class.
Liang Ying always said that her son was lucky: he entered the general school, was accepted by teachers and classmates, and found a satisfactory "shadow teacher". However, behind this "luck" there is the experience of being rejected by two general schools, the prejudice of some strangers and the several changes of the accompanying teacher.
In the relevant documents, children like Sissi attending a general school are called follow-the-class. In 2017, the Ministry of Education and seven other departments issued the "Second Special Education Improvement Plan (2017-2020)", which clearly prioritizes the use of ordinary schools to attend classes, and arranges for children and adolescents with disabilities of the nearest age to receive compulsory education. Data from the Ministry of Education show that from 2018 to 2020, the number of special students enrolled in ordinary primary and secondary schools accounted for 49.41%, 49.15% and 49.47% of the total number of special students in school that year.
Sissi has the typical symptoms of autism. His eyes are difficult to focus, he will glance back and forth, his body will shake involuntarily, his mouth will often pop out of his mouth without any communication meaning, and sometimes he will suddenly lose control of his emotions and cry angrily. Liang Ying knows that if you want your child to study smoothly in the general school, accompanying reading is indispensable. And she prefers to find a "shadow teacher".
The "shadow teacher", also known as the accompanying teacher, refers to the shadow following these special needs children and teaching them to adapt to learning, rules and social interactions in school.
This role is becoming the choice of parents in many big cities. The "shadow teachers" employed by parents have not yet been included in the formal education system, and are facing multiple embarrassing situations such as not being accepted by general schools, unbalanced supply and demand, and no industry standards.
In this regard, the Ministry of Education issued the "Guiding Opinions on Strengthening the Work of Attending Classes in the Compulsory Education Stage of Children and Adolescents with Disabilities", pointing out that it is necessary to vigorously carry out the training of teachers attending classes, incorporate the general content of special education into teachers' continuing education and related training, and enhance the special education professional quality of teachers in all ordinary schools.
Azure: an employment "hatchery" for people with autism
Zhang Manzhu is the founder of Azure Studio, and 10 years ago, she started this non-profit organization that helps people with mental disabilities such as 20-45 years old with intellectual disabilities, Down syndrome patients, and autism patients.
Around 2003-2004, Zhang Manzhu, who was concerned about environmental protection, learned that a volunteer friend's child was suffering from autism, and she encouraged the mother to take the child out to eat and participate in activities. "In this process, we found that it is very difficult for mothers to bring an autistic child, because of the lack of medical care and education in the early days, this child is really difficult to carry."
At an international organic food and green food fair, she saw a handmade soap expert demonstrating the making of handmade soap. "The whole process is manual, it should be relatively easy, handmade soap is healthy and environmentally friendly, and it is also a high-end product." I asked the teacher if he could teach autistic children a skill, and the teacher agreed. Zhang Manzhu said.
In 2009, she opened the Azure Studio, gathered several volunteers to learn how to make handmade soap, and then brought people with mental disabilities to participate. Initially, Azure Studios cared for them in a "mom with child" approach, and in their spare time making handmade soap, they played small games such as digital solitaire and idiom solitaire together, encouraged mentally handicapped children to tell stories or sing, and occasionally went out to participate in social activities together.
"Just this level of learning has helped them a lot." Zhang Manzhu found. Subsequently, The Azure Studio systematically arranged music lessons, painting lessons, Traditional Chinese studies lessons, sports lessons, drama lessons, etc., fixed the class time, and let the trainees receive regular training.
She observed that for children with autism, at an early age, parents are often willing to invest a lot of time, energy and money in medical services, rehabilitation training, and special education. Children's shaping is relatively strong, the learning progress space is large, and the effect is relatively significant. But when the child has reached adulthood, the exhausted parents gradually lose hope and only want the child to be safe, full of food, clothing and warmth.
"These children don't do anything at home, it's eating, resting, watching TV, playing electric, parents don't take them on a tour, they don't take them to learn new things, they don't take them out, they're closed, they're not in a good mood, it becomes a vicious circle." In the absence of tuition fees, almost no one in the society is willing to do tutoring for the elderly mentally disabled groups. Zhang Manzhu explained.
Learning from life is a major feature of Azure Public Welfare, and all students must participate in daily labor such as sweeping the floor, wiping the table, washing cups, washing molds, and sweeping toilets.
Once a parent was angry when he learned that his child was cleaning the toilet in the Blue Studio. "She called me angrily, scolded me, and even intimidated me, saying she couldn't let her son sweep the toilet because there was nothing at home for him to do. I told her, it's impossible for your children not to do it, other children to do it. We teach them to live together without discrimination. We respect the personality of each student and cannot be unfair. Zhang Manzhu said.
Azure Studio insists on no tuition. Zhang Manzhu believes that once the fee is charged, parents will not let the elderly mentally disabled people join the Azure Studio, "then this child will lose an opportunity for us to help."
Students who come to Azure Studio can earn a small income by their own labor. According to different labor capabilities, their hourly wages are around 6-10 yuan.
Students learn to play soap in the Azure Studio Picture: Interface News
Zhang Manzhu believes that Azure Studio is a training platform and an open "semi-sheltered" workplace. When the trainees are able to stand on their own, Azure Public Welfare encourages them to get out of the shelter and enter the social work, and the jobs are introduced by acquaintances.
"As long as they meet the three elements of simplicity, repetition and safety, they can do it, such as cleaning, tidying and other work." Zhang Manzhu said.
In 2014, a girl with intellectual disabilities who had been training for two years at Azure Studio managed to work as a typist at a human resources company. She has a calm personality, relatively strong learning ability, and a relatively stable job. She is also the first student in Azure Studio to successfully achieve social employment.
There was also a trainee who used to deliver paperwork at the tax office, later worked as a waiter in a restaurant, worked as a clerk in a sneaker shop, and was also responsible for delivering goods in a foreign trade company. Due to lack of experience, once, he sent more than 2,000 yuan of goods wrong and was fired by a foreign trade company. Now, he works on the streets. "That's how he grew after he had a lot of work experience, and it's hard for him to get there without giving him the opportunity to grow." Zhang Manzhu said, "After they accumulate work experience, they can slowly get some better opportunities." ”
A little more news
What kind of job is suitable for adults with autism?
On the mainland, autistic people and their families are increasingly concerned by society, and social security and rehabilitation assistance work is gradually improving. However, in several important links such as rehabilitation, education, employment, resettlement and social security, the main resources and forces are currently concentrated in the rescue rehabilitation of 0-6 years old, integrated education is starting, while employment and resettlement are quite weak, and the contradiction between actual demand and social service supply is quite prominent. If rehabilitation and education are disconnected from employment, older autism will be idle at home, there is nothing to do, its rehabilitation education effect will be reduced, functional impairment will be aggravated, and it will bring greater obstacles to itself and her family.
It is understood that the first generation of autistic children diagnosed in the mainland have now become middle-aged people around 35-40 years old, and the autistic children diagnosed in the 90s have long been adults.
According to the 2016 Blue Book of Autistic Family Needs in China, the employment rate of adult autism is less than 10%. At present, there are no relevant support policies in the mainland to help adults with autism find employment, and they generally face the problem of employment after graduating from rehabilitation institutions or special education schools.
In fact, autistic people are not without employability, the promotion and implementation of early domestic treatment, integrated education, special education, autistic people in the policy and professional fields of attention, and more parents devote themselves to education and training, so the employment potential of autistic people continues to increase.
Practical studies have shown that the following jobs are particularly suitable for autistic people: library book sorting, bakery and pastry maker, factory parts assembly, photocopying, photowash shop, door guard, supermarket goods sorting, resource recycling center, warehouse goods management, data entry clerk, flower farmer, money counting man, etc. There is also a large number of Asperger/high-functioning autistic people with super mechanical memory and artistic expression, and the development of potential is extremely valuable and can bring great energy to their employment.
Upstream News Synthesis China Youth Daily, Qilu Evening News, People's Network, Interface News
(All autistic patients and their families in this article are pseudonyms)