Autistic children are considered stars in the sky. They fall from the starry sky, but are addicted to their own world and cannot sense the existence of light sources.
1989, a movie about family affection and healing, "Rain Man" won four Oscars: Best Picture, Best Screenplay, Best Director and Best Actor.
The story is simple. Charlie found that his father left his inheritance to his brother Raymond, who had autism disorder, so he wanted to cheat the wealth and planned to use his brother's super memory to gambling and make money. But in this process, blood-related affection broke the original alienation, and the sincere and moving brotherhood replaced Charlie's original selfish desire to seek only his own interests.
(^ Stills from the movie "Rain Man")
This is a touching film that reflects the deep love between brothers and sisters, and it is also the most widely influenced classic autism film so far. We often call autistic people "rain people", which is also from this video, with a profound impact.
Raymond, who has autism disorder in the movie, always likes to talk to himself and ignores other people's questions. Many of the shots in it are presented to us through the perspective of Raymond, allowing us to intuitively feel the difference between the world in the eyes of people with autism and ours. It also makes more people want to understand autism, understand, care about and explore the psychological world of autistic people.
Autism, also known as autism or autism disorder (ASD), and most people with autism have very limited and fixed interests, are extremely focused on their interests, live in their own world, and are incompatible with the communication from the outside world.
Since the United Nations designated April 2 of each year as "World Autism Wake Day", this day of caring for autistic people has been around for more than a decade, and autism has also been understood and well-known by more and more people.
In recent years, there have been new changes in the cognition and topic research of autism: the research on the topic has become to explore pathological inducements and focus on treatment, and how to reasonably set up the social acceptance mechanism. These problems reflect that the current social environment is changing in the cognition and acceptance of autism.
There are at least 10 million people with autism in my country
But there are still many people who don’t understand what autism is
China’s second national sample survey of disabled people clearly lists autism as mental disability, and the medical name is autism spectrum disorder. Data shows that in 2016, 10 million people with autism spectrum disorder in my country, with an overall prevalence rate of about 1%. The incidence rate of autism spectrum disorder has ranked first among all kinds of mental disabilities in my country.
The 10 million people may have more than 2 million children aged 0-14, and this data is growing at a rate of 10% per year. Autism spectrum disorder has become the most important type of mental illness in children. More than 80% of people with autism have no independent ability to act and have no social interaction.
【Video】
Compared with other countries around the world, the autism rate of children in my country is not high, but due to the large population base, the overall number still ranks at the highest level in the world. Faced with such a large population, most people may have heard of autism, but they don’t understand it, and the proportion of them is more than 80%.
A survey in 2019 showed that in daily life, 85.13% of people do not understand what autism is, of which 8.38% have never even heard of it, and only 14.57% of people understand autism. The ways people understand autism are mainly through news broadcasts, newspapers and media publicity, and film and television works.
According to the "Report on the Development Status of the Autism Education and Rehabilitation Industry in my country", the term autism first appeared in the 1950s, but the real diagnosis and research began with the report of the earliest cases of autism in mainland China that was discovered and confirmed by Professor Tao Guotai of Nanjing in 1982. It can be said that research on autism in mainland China is 40 years later than that in the United States.
However, in recent years, more and more people with autism have been discovered, which has also attracted high attention from the medical community, education community, society and the media.
From the number of publications published on CNKI about autism, we can see that my country is concerned about autism research. Especially in the past decade, the relevant research literature has increased rapidly, and the total number of publications has exceeded the previous decade. Among them, the number of publications reached 120 or more in 5 years, and the most publications were published in 2014, reaching 218.
is different from media reports that focus on popular science publicity, and paper research is more inclined to topics such as autism cure, education, and social integration. These research results can also provide some inspiration for subsequent research and practice.
Autism has nothing to do with parental upbringing
Genetics is the main cause
In terms of perceiving the causes of autism spectrum disorders, nearly 60% of the population believe that it is caused by psychological disorders, and more than half of them believe that it is lack of family care. It can be seen that most people have a low understanding of autism.
Before the 1970s, autism spectrum disorder was considered a psychological disease, and the "refrigerator mother" theory was prevalent, that is, autism was caused by parents' indifference in their relationship and excessive formalization of upbringing. But in modern times, this theory has been overturned, and research has found that autism is a congenital neurodevelopmental disorder and has nothing to do with the parenting style.
A large number of studies have shown that the cause of autism spectrum disorder is comprehensive and not a single cause. Although the specific other single cause has not been fully confirmed, it is certain that 60% of autism are genetically related.
In addition to the already clear gene mutations or mutations, more causes are still not fully understood. But now more and more scientific research has found that the interaction between genes and environmental factors may also cause autism, that is, gene abnormalities cause genetic susceptibility to specific individuals. Poor conditions before conception, during pregnancy, or during childbirth may also be the trigger for the disease.
In the study, it was also found that some children with autism have abnormalities in the cerebellum and cerebral cortex, and their brain functions are different from those of normal children, which leads to abnormal imitation and emotional development and the disorder of the psychological ability of others. This may also be a cause of autism.
Raymond in "Rain Man" has to watch fixed TV programs at a fixed time, each meal has fixed recipes, and sleep at a fixed time. He also only wore boxer briefs purchased from a certain store. In addition, he also refused to take a plane or drive on the highway, all due to his fear. He suddenly lost control of his emotions while at the airport, yelling as Charlie tried to force him to fly.
As presented in the movie, the release of the authoritative diagnostic standard of the United States, DSM-V, autism spectrum disorder has two core characteristics, namely social communication disorder, narrow interests and repetitive stereotyped behaviors. Speech and non-verbal communication disorders are considered to be the result of the first two core disorders and are an important manifestation of autism.
This is also the most common phenomenon in people with autism spectrum disorders that we encounter in daily life. We are not deaf but do not care about sounds, are not blind but turn a blind eye to you, are not dumb but always keep silent. It is like the stars in the sky, flashing far and lonely.
Raymond in the movie "Rain Man" has amazing memory, and his younger brother took Raymond to the casino and made a fortune. In reality, "intellectual island" is also a special manifestation of some autistic people. Because of the lack of other sensory, emotional interaction, understanding and non-verbal communication abilities, they perform abnormally in other aspects, such as painting, music, calculation, etc., but have poor living and communication abilities.
(^ Stills from the movie "Rain Man")
But people with autism who have "special talents" like Raymond in the movie are rare. Most people with autism do not have such abilities. Some are just common "common diseases", mental development is retarded, mentally lower than ordinary people, and some even have epilepsy.
Because of this, their lives are more difficult.
Family with autistic children
It's so bitter and difficult
A parent from Lingshui, Hainan once said that his three-year-old child recovered in the institution for ten months, but still could not solve the problems of eating and going to the toilet.
Another parent who sent a child with autism to school was "persuaded to leave" by the school because of behavioral deviations such as disrupting the classroom and not following instructions. The school’s principal said that the school lacks the conditions for attending classes, especially the lack of special education teachers.
As early as 1994, the State Education Commission (now the Ministry of Education) clearly stipulated that "let disabled children attend classes", but autism is not clearly included in the document, and ordinary schools refuse to enroll children with autism often occur. In 2011, the Ministry of Education revised the "Management Methods for Disabled Persons" to clarify that "mental disability" includes autism, so the in-class study in public schools has also begun to be open to autistic children.
But in real life, their path to study is difficult and bumpy. The public welfare organization "Integration of China" Parent Organization Network conducted data surveys twice in 2017 and 2018. The data is heartbreaking: 27% of autistic children aged 6 to 15 were asked to drop out of school, and 26% of autistic children of appropriate age face no study. Ordinary primary and secondary schools lack practical textbooks, professional teachers and specialized teaching resources. For students studying in class, they do not receive targeted training.
Compared with foreign countries, there are many intervention projects worth learning from in the education of children with autism. For example, helping children with autism face social and learning difficulties and challenges after entering the general class, including delayed reinforcement, social stories, self-management, picture schedules, visual prompts, etc., which are all cases worth learning from in China.
is also further disconnected from the society because it is impossible for ordinary children to enter schools and receive routine and systematic education like ordinary children to learn the ability to survive and develop in society.
"Integration of China" data shows that taking Guangzhou as an example, the employment ratio of people with disabilities is about 40%, while the employment ratio of people with mental disabilities is only 4%.
From childhood to school to vocational training, work and employment, and finally to old age, it is a systematic chain of rehabilitation, education and nurturing. Every step in these chains brings an unbearable burden to the family. Especially for patients with moderate to severe and older autism, there is nowhere to go, and the road to recovery is bumpy and long.
"Families with children with autism are really hard and difficult." The pressure the parents of children are one of the highest types of parents with disabilities, Huang Qi, a member of the National Committee of the Chinese People's Political Consultative Conference, once said.
Rehabilitation problems for children with autism spectrum disorder have always been in the minds of parents. Data from the "China Autism Parents' Needs Questionnaire" shows that 52.4% of families have given up their work to take care of autistic children, and most of them are given up their work by their mothers.
Some also borrow money to treat their children with rehabilitation, and some parents span thousands of kilometers from the southwest mountain village to seek medical treatment for their children across the country, but the rehabilitation effect of many children's patients is not ideal.
In the survey on rehabilitation costs, more than half of the people have not received subsidies. At present, my country does not have a unified standard for economic subsidies for autistic children, and subsidy policies in different places are also different. The conditions for applying for subsidies in some places are also relatively limited. For example, in Shanghai, applying for subsidies for children with autism spectrum disorders requires parents to undergo rehabilitation training at rehabilitation institutions designated by relevant departments to be reimbursed for subsidies based on the invoices issued by them. There are only a few of these institutions, and the number of children can be accommodated is very limited.
Because the rehabilitation venue and professional requirements are high, and most people do not receive subsidies, the high and continuous treatment costs make more than half of the families think it is difficult to bear.
Many parents said, "Spend money at that time is like running water." Autistic people need a lot of money to support during medical treatment and rehabilitation training, so many families can only be forced to give up. The cost of treatment alone becomes a huge financial burden for families. In addition, there is a person in the family who gave up work to take care of autistic children, which increased the family burden and reduced the income, further aggravated the family's economic pressure and caused the family's poverty.
In addition to economic pressure, the diagnosis of autistic children will also lead to deepening of internal conflicts in the family. Parents may blame themselves, suspect who is the fault, or blame their spouse for having a genetic problem, which leads to disharmonious or broken marriage.Coupled with economic problems, friction between family members has aggravated family conflicts and increased pressure on family members.
There is a huge teaching funding gap in rehabilitation education institutions in my country
From the United States, a survey in 2016 pointed out that more than 70% of autistic children have normal or near-normal intellectual or language skills, and provide scientific intervention and support, so they can integrate into mainstream schools. Zhanye rehabilitation training institutions play a crucial role in the intervention of autistic people and are also the "last hope" for autistic families.
According to statistics from the China Disabled Persons' Federation, in 2017, there were only more than 2,000 designated institutions for rehabilitation and relief for disabled children across the country, and there were only more than 20,000 rehabilitation personnel engaged in autism education in the country. Some experts said that there is a gap of about 300,000 professional autism rehabilitation education practitioners.
's current resource support is far from enough to meet the growing demand, and the contradiction between the incidence of autism and the professional ability of institutions to serve is relatively prominent; institutions mainly focus on educational rehabilitation for children aged 0 to 7, and the demand for intervention services after the age of 7 and older people is stronger, but the existing resources are far from meeting the huge market demand.
According to the "China Autism Parents' Needs Questionnaire", 19.6% of parents expressed great satisfaction in the professional level of autism rehabilitation institutions/schools, and 11.1% of parents expressed dissatisfaction or were very dissatisfied.
, and in the survey of rehabilitation institutions/schools, it was found that the development of professional culture is the biggest challenge they are facing at present. The respondents pointed out that there are currently no professional courses for autism treatment in China, nor are there government-supported autism training institutions or research institutes, and there are only some sporadic project research, and most autistic patients cannot receive the most basic systematic treatment and help.
Among the normal schools in mainland my country, only more than 80 have special education majors, and many special education majors recruit very few students. Currently, only 10% of primary and secondary schools understand special education.
There are no clear standards for the staffing, salary, learning opportunities and platforms of special education schools, resulting in a shortage of special education teachers and staff.
Take East China Normal University as an example. In 2008, the employment rate of graduates from the school’s special education major was 100%, of which 1/3 continued to study for graduate school, 1/3 taught in local universities, and 1/3 worked in the Civil Affairs Disabled Persons’ Federation of Party and government organs and public institutions, while only one person actually went to local deaf and dumb schools to find employment.
In terms of economic resources, many civil and non-government institutions have great financial pressure. The autism rehabilitation institutions/schools require a large area of space, and the teaching aids, professional equipment and training professional teachers required to be equipped all require a lot of money. Although the rehabilitation center has tuition income and a small amount of social funding, it can only barely maintain the purchase of teaching tools and pay for teachers. Moreover, with the increasing number of students in recent years, the number of teachers must also increase accordingly, and the gap between income and expenditure is becoming larger and larger.
Under this circumstance, among the 2 million to 3 million autistic children nationwide, only about 30,000 were trained, and the service rate was less than 2%. In the event that industry standards have not been issued late, in addition to top-level design, university professional setting and discipline training, multiple forces are also needed to mobilize.
Acceptance is more important than attention
With more and more special groups, autism has evolved into a social problem, life, study, work, and integration into society... Every survival link of autistic people needs to pay attention to the government and all areas of society, gather sand to form a tower, work together to deal with it, and turn the negative into the positive, and all this needs to start with acceptance.
Because the cause is complicated, autism is currently a world problem. There is no complete cure yet and can only be relieved through early intervention.
The National autism Society of the United Kingdom clearly states on its official website: What autistic people need is not to be cured, but to be accepted by the world. They just perceive the world around them differently than ordinary people, which affects their communication skills and their ability to communicate with others.
China Health Knowledge Dissemination Incentive Plan Health Knowledge Promoter Bai Yansong called for: "What is more terrible than autism is indifference and closure. Don't let such a conspiracy aggravate the loneliness of autistic children."
Care and acceptance are a manifestation of the progress of a country's civilization. For people with autism spectrum disorder, our protection is the strongest resistance, and learning to accept is more important than attention.
April 2 is "World Autism Awakening Day", but at this moment, we prefer to call it "World Autism Acceptance Day" to make every real life shine.
Reference materials:
【1】Wucai Lu Autism Research Institute "Report on the Development of China's Autism Education Rehabilitation Industry II"
【2】Fang Gechen, Wu Xiao, Zhong Chang, Ge Luyao, "The Current Situation and Development of Hangzhou Autism Children's Rehabilitation Center", Psychological Monthly, 2019 Issue 6 Vol.14
【3】Liu Lilan, "Visualization Analysis of Hot Topics in Autism Research in the Past Ten Years", Journal of Suihua University, Vol. 41 Issue 1
【4】Guangming Daily
https://baijiahao.baidu.com/s?id=1662994749844754290wfr=spiderfor=pc
【5】 Youth Daily
https://app.why.com.cn/epaper/qnb/html/2014-04/02/content_197617.html?div=-1
Data News Editor: Chen Hualuo
New Media Design: Chen Dong
Video Production: Li Yazhen
Proofreading: Xue Jingning
