Children with autism

"Medically, I was diagnosed with 'autism spectrum disorder', but I wasn't happy with the naming because I didn't feel 'alone'."

"Low-frequency sounds that I find piercing scare me, and you can barely hear those sounds; some of the things you don't think are a laughing matter, I revel in them and laugh endlessly ......"

"I love researching computers, trying to redo the system on my home computer, and after n number of failures, I finally managed to install Windows XP, giving me a special sense of accomplishment."

On December 4, 2021, 11-year-old Cixi "wrote" this "Letter to Class 20", with a neat and childish font filling the composition paper grid, a word that tells a little of his difference. This was originally a homework assignment, but his mother, Liang Ying, had the whim to complete a popularization of autism.

The letter was written by Liang Ying in her son's voice and then copied by Xixi, who did not have enough language skills yet. Before writing the letter, Liang Ying tried to explain the reason for writing the letter, which she thought Xixi would understand.

The ending was a surprise. The teacher read the letter in the class and had the whole class write back to Xixi. Some parents were moved to tears when they heard about it, and some children's mothers thanked Xixi in the class group.

Liang Ying always said that her son was lucky: he entered the general school, was accepted by his teachers and classmates, and found a satisfactory "shadow teacher". After talking with her, the reporter found out that behind this "luck" was the experience of being rejected by two ordinary schools, the prejudice of some strangers, and the change of chaperones several times.

April 2 is the 15th World Autism Awareness Day, and this year's theme announced by the United Nations is quality inclusive education for all.

In recent years, with the promotion of integrated education, more and more children with autism like Sisi are enrolled in regular schools. However, with the remaining prejudices and the lack of special education resources and expertise, the implementation of the concept of inclusive education is facing challenges.

More than 40 letters in response

In Class 20, the biggest difference between Xi Xi and other students is that she has a "shadow teacher" around her.

When she first enrolled in school, Liang Ying went to experience a week of chaperoning, and other children in the class always cast curious eyes, and some of them asked why Liang Ying followed Xixi to school. Later, the "shadow teacher" was often asked various questions: Why does he only cry? Why is he laughing? Why does he make a scene? Some children asked Liang Ying directly if XiXi was autistic.

When pressed by the children, Liang Ying would usually say that Xixi was not well and needed a teacher to help her maintain discipline in the classroom. Such "questions" followed the children from first grade to fourth grade, until the letter-writing incident.

Last winter, when she learned that the teacher had assigned a letter-writing homework assignment, Liang Ying felt that the time had come. Xixi had been with her classmates for more than three years and had become attached, so writing letters publicly might be a good way to do so. To Liang Ying's surprise, her son received more than 40 letters in response.

"We know your situation through the letter, but we do not reject it, on the contrary we will be more tolerant of you."

"You still couldn't do anything at the beginning of the school year, you couldn't read, you couldn't write ...... but you can do everything now, you can play the piano and you play it well ......"

"I'm glad you became a member of a four-year class of 20 ......"

For parents of autistic children, the question of whether to tell the truth about their children to the outside world, especially how to inform the school, their classmates, and other parents after entering the general school, has become more or less a threshold for them. "Fear of discrimination, fear of not being accepted, fear of rejection", every parent interviewed had such fears and worries.

So they were careful, some took the long view, some wove well-intentioned lies, and some endured until they had to say something.

Six-year-old Yuan Yuan was found to be out of sorts the first day she entered the general school. When the teacher took the children to the bathroom, he was attracted by the sound of the toilet flushing and did not want to go out. After Yuan Yuan's mother told her the truth, the teacher asked if the child should go to a special school. Yuan Yuan's mother insisted on staying at the regular school, and both sides discussed and decided to put the child on probation for one year.

Xiaojun's father chose to disclose his child's identity in the classroom group because of a physical confrontation. At that time, Xiaojun was in the second grade at a general school in Tianjin. Once he went to take his classmate's stationery and was refused, Xiaojun insisted, and the two argued, followed by a shoving match, and the classmate's parents soon found out about it. Considering that continued concealment might bring more risks to the child, and disclosure might also face the question of whether he could continue his schooling, on balance, Xiaojun's father decided to explain his child's situation. Later, noticing that his son was becoming less and less inclined to go to school, he applied for a suspension.

"The biggest obstacle is perception." According to Professor Deng Meng from the Institute of Inclusive Education at East China Normal University, the main reason why autistic children encounter all kinds of problems when entering general schools is because of society's long-standing prejudice and misconceptions about them. "Many people think that autistic children will show aggressive behaviors such as hitting, but that is a minority."

"Shadow teachers"

Having crossed the first threshold of being accepted into a regular school, the next challenge for "Sisi" is how to stay in school and complete at least nine years of compulsory education.

In 2017, the Ministry of Education and seven other departments issued the Second Phase of the Special Education Enhancement Plan (2017-2020), which gives priority to the use of regular schools for children with disabilities to receive compulsory education near their classes. Data from the Ministry of Education show that the number of special students attending classes in ordinary primary and secondary schools in 2018-2020 will account for 49.41%, 49.15%, and 49.47% of the total number of special students enrolled in schools in that year.

When the "Sissies" are enrolled in regular schools, the need for chaperones has become a game between parents and schools. After a year of deferment, Yuan Yuan re-enrolled in school and the school offered to have a parent chaperone. Originally, she thought that she would only accompany her child to adapt to the school, but Yuan Yuan's mother did not expect that she would be accompanied for 3.5 years. During that time, she negotiated with the school at least six times about withdrawing the chaperone, which failed repeatedly.

"The school kept arguing that it's software and hardware were not up to standard, that it could not take care of the child, and that the child could be potentially dangerous." Yuan Yuan's mother believes that the school exaggerates this danger and that, as far as she can see, Yuan Yuan is adapting well to the school environment, has no emotional problems, does not interfere with classroom discipline, and does not disturb classmates or teachers. Even during a month and a half in the second semester of second grade, when parents were not allowed to enter the school due to the epidemic, Yuan Yuan had gone to school independently.

It was not until the last negotiation at the end of the first semester of fourth grade that Yuan Yuan's mother took a strong stance, citing several reasons why her child did not need a chaperone and firmly demanding withdrawal.

In her opinion, what autistic children lack most is social reference, and they need the support of peers and professional teachers, not parental chaperones. This will make the child more independent, less dependent on parents, and make the child feel ordinary in her heart.

Deng Meng sees parental chaperoning as an "abnormal" phenomenon. He believes that this approach is somewhat contrary to the characteristics of the public good of education, which is the school will be the responsibility of the child to the parents. Any parent who enters the school, even if they do nothing but sit in the classroom, will change the classroom teaching ecology, which is unfair to both teachers and children, and is an impact on the school teaching ecology. And parents accompanying their children to school means giving up their jobs, which in turn increases the financial burden on the families of autistic children.

Deng Meng believes that chaperones can be appropriate during the adaptation period when autistic children first enter school, but they should be gradually reduced and withdrawn gradually. He suggests that the best person to accompany the child is not the parent, but the parent organization, or a "shadow teacher" or another trained professional.

A "shadow teacher," also known as a chaperone, is a person who shadowed these special needs children, teaching them to adapt to the learning, rules, and social interactions at school.

This role is becoming the choice of many parents in large cities. Shadow teachers, who are employed by parents, have not yet been incorporated into the formal education system and are facing multiple embarrassments such as not being accepted by general schools, an imbalance in supply and demand, and no industry standards.

Sisi has the typical symptoms of autism. His eyes were hard to focus on, he would glance back and forth, his body would shake involuntarily, words without any meaningful communication often popped out of his mouth, and sometimes he would suddenly lose control of his emotions and cry in anger. Liang Ying knew that if she wanted her child to attend a regular school, a chaperone was essential. She prefers to find a "shadow teacher".

"This way the child may progress faster, less dependent on the parents, he will have his social role, in the school, not the mother's son, but the students of this school." Liang Ying said it was also a time for her to give herself a break, "Staying in one piece every day, I was afraid of being depressed."

The offer to bring a chaperone into the school had been rejected by two schools before entering what is now an elementary school.

Xi Xi was 8 years old when she entered elementary school. The current chaperone has been with him for more than three years, sitting next to him, reminding him of classroom discipline, calming him when he cries, and helping him keep track of his homework. She is also a mother of an autistic child. Before her, XiXi had three or four other chaperones, some of whom quit after one day, some of whom did not understand autism, and some of whom were older than the teacher.

By this summer, Xixi will be 12 years old, and Liang Ying has already started to worry about her son's enrollment in middle school, "The chaperone may not be able to withdraw."

Resource teachers

Diao Na, a teacher at Tianjin Rongze Special Youth and Child Development Service Center, analyzes from a professional perspective that the ultimate goal of chaperoning is not to chaperone. The withdrawal of chaperones does not mean that the child does not need professional support, but rather that it is provided by the school, "as well as the special education teachers, the teachers of the general education system,d the parents' continuous support."

These have long been reflected in relevant documents. As early as 2014, the Ministry of Education and other departments mentioned in the "Special Education Enhancement Plan (2014-2016)" that students with disabilities should be placed with classes in ordinary schools whenever possible, and that the construction of special education resource classrooms and barrier-free facilities should be strengthened.

Since then, the Ministry of Education has issued documents such as "Guidelines for the Construction of Special Education Resource Classrooms in Ordinary Schools" (hereinafter referred to as "Guidelines") and "Guidance on Strengthening the Work of Children and Teenagers with Disabilities in Compulsory Education with Classes" (hereinafter referred to as "Guidance"), which improve the resource support system for attending classes with students, strengthen the construction of resource classrooms, and equip necessary resource teachers and professional staff, etc.

In 2020, an elementary school in Tianjin, where Yuan Yuan is studying, also has a resource classroom. During the escescortingriod, Yuan Yuan's mother found that this classroom was not fully utilized. In her impression, her child went to the resource classroom only a handful of times.

The above-mentioned "Guide" points out that the resource classroom is a place for students with disabilities and other students with special needs, teachers, and parents to provide special education professional services, which should have functions including special education consultation, assessment, evaluation, file building and other activities, subject knowledge tutoring, and life coaching.

According to Deng Meng's observation, the construction of resource classrooms in China is still in the preliminary stage of promotion, and some errors have occurred in the process, such as too much rehabilitation equipment, and the phenomenon of emphasizing things over people.

In 2020, the person in charge of the Department of Basic Education of the Ministry of Education answered a reporter's question on the Guidance, saying that the construction of resource centers and resource classrooms in some areas is insufficient, and the professional support for the accompanying classes is limited, which affects the quality of the accompanying classes. In addition, the number of resource teachers in ordinary schools is insufficient, the professional level of education and teaching needs to be improved urgently, and the form of work with the class is greater than the content in individual places.

The parents of Xixi, Yuan Yuan,d Xiao Jun coincidentally chose to keep their children in school for only half a day, focusing on language, mathematics,d foreign languages. "It's mainly based on the fact that schools nowadays don't have professional, individualized support for them, and staying like this for a whole day is a bit stressful for the children." Xiaojun's father told the truth behind it.

In Deng Mang's opinion, there can be no resource classrooms, but not without resource teachers. "With a resource teacher, any school setting can be a resource classroom."

He explains that resource teachers are professional teachers who work in special education inside regular schools. Unlike chaperones, who are primarily employed, resource teachers have teaching credentials, resource teacher certification, formal staffing, and clear responsibilities. They are required to manage files, plan instruction, and provide professional support for special needs children, and even organize and coordinate school-wide special education. However, the profession is currently in the initial stages of development, with many part-time and few full-time teachers, and there is a long road to specialization as they begin to be gradually equipped in Beijing, Shanghai, Jiangsu, and Zhejiang.

According to Diao Na's understanding, some schools in Tianjin are currently equipped with resource classrooms. But how to use these classrooms more fully and efficiently, so that more children, including special needs children, can benefit from them, still needs further discussion and implementation. As for resource teachers, Diao Na said that teachers from local public special education schools will enter general schools to provide itinerant supervision and support for special needs children, acting as part of the role of resource teachers.

In contrast to the demand for resource teachers, Diao Na believes that as more and more special needs children enter general schools, it is urgent to increase the training of general teachers in special education. She has met many teachers in general schools who do not understand the situation of these children, and even when they have been exposed, they are still confused about how best to teach them.

Diao Na's organization had participated in training courses for general school teachers on special education, and she found that most of the participants were psychology teachers from various schools, and she was touched and surprised by their motivation and enthusiasm to learn. At the same time, Diao Na realized that even professional psychology teachers are still inexperienced in the education of special needs children, including autistic children, and their professional knowledge needs to be further improved.

The aforementioned Guiding Opinions point out that training for teachers who attend classes should be vigorously carried out, general knowledge content of special education should be included in teachers' continuing education and related training, and the professionalism of all general school teachers in special education should be improved.

In May 1989, China first proposed in the Opinions on the Development of Special Education that "special education courses should be added to higher teacher training colleges and universities in a planned manner." An article by Gu Dingqian, director of the Steering Committee for Special Education Teacher Training of the Ministry of Education, points out that some teacher-training colleges may not offer this course because they are worried about the heavy burden of students, not knowing that this practice is not suitable for the growth of teacher-training students. Teacher trainees who know nothing about special education may be overwhelmed when they encounter special students in their internship. In the face of the new development of integrated education, the newly released "14th Five-Year Plan of Action for the Development and Enhancement of Special Education" once again proposes to "promote the content of special education courses for teacher-training majors and increase the proportion of compulsory courses", and also proposes for the first time It is also proposed for the first time to "focus on training special education teachers with vocational education ability to adapt to the needs of special education" to meet the needs of vocational education for different types of special students.

"Children of the Earth"

In more than 30 years of special education research, Deng Meng has seen many autistic children who have problems integrating into the general education system, and he prefers to attribute these problems to the result of the children's interaction with their surroundings.

He once came into contact with an autistic child who did not want to go to the bathroom at school, so he always wet his pants. It was later discovered that the child was very sensitive to smells and he could not tolerate the smell of the public toilets at school. Deng gave the child's parents the idea of communicating with the school to see if the toilet could be made cleaner or if the child could use the separate bathroom in the teacher's office building, but the school was unwilling to make changes and the conflict was irreconcilable.

"Every child needs