【Editor's Note】 Today is World Autism Awareness Day. Children with autism are called "children of the stars", they live in their own world like stars, flickering alone in the dark of night, unable to communicate normally with the outside world. Data show that there are 10 million autistic people and more than 2 million children with autism in China. Based on the birth rate of the mainland population, the number of children with autism is increasing at a rate of nearly 200,000 per year, based on a conservative estimate of 1% prevalence.
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"Childhood autism", when seeing the results on the diagnosis, Wen Qing was sad, but she was a little relieved.
The stone hanging in her heart seemed to have finally landed, and she wanted to talk to the doctor about something more, but suddenly she choked up and couldn't speak.
On the day of the appointment clinic, Wen Qing specially read the weather forecast in advance, fortunately it was a sunny day. She didn't want to see bad news on a rainy day. On the way home, she sat in the car and wept, the sky outside the window was exceptionally blue, and there were white clouds floating, looking at all this, it seemed that she was not so sad.
Wen Qing, a former journalist and a photographer, have been documenting their children's growth on social networking sites for nearly a year. In the photos and videos, Doudou most of the time wears two small braids, sometimes smiling, and occasionally teardrops hanging from the corners of her eyes.
Warm sunny and beanie. Courtesy of respondents
On the other end of the phone, Doudou made a babbling sound next to her mother, she was 4 and a half years old and could not speak. In the past two years, everyone recognizes that her biggest progress is in the eyes. She basically no longer avoids eye contact, and seems to have spirituality, "but other aspects have not changed much." ”
Doudou could not speak when he was 1 year and 2 months old, and the family thought it was caused by a long-term stay in the suite. Thinking that there are many children who talk late in their hometown, they don't care too much, thinking that it would be better to see more people with their children.
1 year and 8 months, Wen Qing's friend came to the house as a guest, Doudou completely ignored the call of his uncle and aunt, ran around with his own care, stared at a toothpick out of his mind, until he shed tears.
Beanie often stares at his fingers in a daze, small wooden sticks, toothpicks, pens... This slender and long thing she could look at for half a day. When someone looks at her, she closes her eyes or twists her head, doesn't want to have physical contact with people, and doesn't respond to being called by name. She obsessively arranges items like blocks and shoes, and cries if the results are destroyed.
Wen Qing had to hold her, her head pressed against her face, only then could she slowly calm down. Mom's ears were filled with her cries, but she had to stay in this position for half an hour, an hour, or even longer.
Friends reminded Wen Qing that Doudou may have autism, but Wen Qing did not dare to take her child to the hospital for treatment.
At first, Wen Qing proposed this possibility to her lover, who was angry, saying that she was sick and actually suspected that her daughter had a nervous problem. This is their first child, Wen Qing's lover looked up a lot of traits about autism online and found that it was not the same as her daughter.
In 2020, Doudou is already two years old. The family and the child spent time together, and as the days went by, the father found that the child's condition was indeed somewhat serious, and the night before he went to the hospital for examination, he broke down and cried in front of his wife for the first time. Because although the diagnosis has not yet been confirmed at this time, the two already have a positive answer in their hearts.
According to the 2014 data of the Blue Book of Chinese Autistic Family Needs, among the more than 4,000 parents interviewed, 43.8% of parents could not accept the fact that their children were diagnosed with autism quickly, only 24% of parents could accept this fact more quickly, and only 20% of parents were willing to let the public know that their children had autism.
Accepting reality is followed by a long healing process. Before Doudou went to kindergarten, Wen Qing taught herself the course of shadow teacher and obtained the induction certificate of autism rehabilitation.
The "shadow teacher" is the teacher who accompanies special children such as hearing impairment, intellectual disability, ADHD, autism and other special children to attend classes in ordinary schools, in order to help children better integrate with the ordinary campus environment.
Doudou's intervention agency only costs a few thousand yuan a month, but in other aspects, it costs a lot.
Wen Qing has had the habit of taking her out to travel since she was a child, but with the development of her condition, Doudou is no longer adapted to the unfamiliar hotel environment, and her diet is also very picky, even sleeping and going to the toilet, there are fixed ways.
When the epidemic broke out in 2020, Wen Qing, who spent all day with her children, felt more and more depressed. They happened to sell a house at that time, and considering the special needs of their children, they bought a caravan and traveled with their children on holidays.
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In addition to relatives and friends who are close by, few people know that Xiao Hao is also an autistic child.
From discovering that his son was abnormal to taking his child to the hospital, it took nearly two years.
When she was not yet diagnosed, she once hoped to improve the child's situation on her own, and intervened early on the child by feeling: locking the mobile phone in the drawer after work, telling the child a story; doing various exaggerated expressions to attract the child's eyes, and once there was a response, she constantly praised and encouraged. On longer holidays, they travel with their children.
"Even if he didn't pay much attention to us at that time, I wanted to wake him up in this way."
Children grow up day by day, and the gap with children of the same age is getting bigger and bigger. By the time he was more than 3 years old, other children had already entered kindergarten, but XiaoHao had not changed much compared with when he was more than 1 year old.
Xiao Hao's father realized that he could not wait any longer, and he persuaded Ren Ran to take the child to Wuhan for examination. The diagnosis was suspected autism spectrum disorder.
Although I had been mentally prepared, I still felt that the sky had collapsed. Before the diagnosis, she had a strong sense of guilt for a long time: whether she did not bring a good child, whether she chatted less with her child, whether she did not give her child enough love... But she never thought that the child's illness was congenital.
A staff member of an intervention agency in Wuhan introduced to Jiupai News, "Now further research has found that the relationship between autism and acquired factors is not very large, and there may be some impact, but it is essentially a genetic problem." ”
Before the age of 3, Xiao Hao only ate liquid food, and when he first ate a bite of shredded potatoes, he was still excited and shed tears.
"This kind of progress may not be understood by ordinary parents, even if he just looks at you, or says a word that has never been said, you will be very happy." 」
When he was more than 3 years old, Xiao Hao often cried and made a lot of noise outside. Crying on the elevator, crying on the subway, everyone next to them looked at them, showing a puzzled and complaining expression.
"There's no way to communicate with him, and he can't control his emotions. Then I would complain about why I had such a child, and I didn't want to care about anything, I just wanted to disappear quickly. Renran said.
When he first entered kindergarten, Xiao Hao was afraid of the unfamiliar environment and behaved very quietly. Two months later, he began to spit at children, pat tables, disrupt classroom discipline and other problems. Ren Ran was often called to school and apologized over and over again.
When the child is 5 years old, the 5-story stairway still has to carry him up and down the stairs, when it rains, one hand holds him, the other hand plays an umbrella, and sometimes has to carry things, each step is very difficult.
After being diagnosed, Ren Ran and his family quickly decided to sell the house in Jingmen and relocate the family to Wuhan.
According to the latest data from the Autism Home Network, there are 43 autism intervention centers in Wuhan, while there are only 8 in Jingmen.
In the past 4 years, I have taken my children to many institutions and spent a lot of money, but fortunately, the intervention is effective, and the children can now attend kindergarten for half a day.
The institution where Xiao Hao is currently working charges more than 10,000 yuan a month, including kindergarten fees and other living expenses, it costs 200,000 or 300,000 yuan a year. "They may have a disease of wealth and need a lot of money, a lot of love, a lot of patience." Still sigh.
XiaoHao's father works in a state-owned enterprise, has a stable income, and has no big problems with the intervention costs of his children, but occasionally he still worries about money.
Claiming that Xiao Hao was diagnosed, he still found out, "Those aristocratic kindergartens and primary schools, we can actually afford to go to school, may just be reluctant, but the child's current situation, reluctant to spend money." Renran said.
An autism intervention facility in Wuhan. Courtesy of respondents
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Worrying about money is the norm in the families of children with autism.
Fei Fei, a child with autism, is 4 years old this year and was diagnosed with suspected autism spectrum disorder at the age of nearly two. At Fei Fei's home, his parents worked normally, and his grandparents took the initiative to take on the responsibility of taking care of him.
"Sometimes Feifei is naughty, I will yell at him, and if he holds his mouth, sheds tears, and runs to grandpa or mom and dad to seek comfort, I will be very happy." Even when he offered to tell me to drink water, I was so happy that I was going to die. Fei Fei's grandmother smiled and recalled.
Although the family is well-off, Feifei's illness still casts a shadow on the family's financial situation.
"If you intervene until you are seven or eight years old, there will be no house of two or three million." FeiFei's grandmother said that it was good that the conditions in her home were solid.
On weekdays, Feifei's daily schedule is to receive 3 hours of intervention in a private institution in the morning and 1 hour in the afternoon at another government subsidy agency. On weekends and other holidays, the family would take him out camping, climbing mountains and occasionally staying in hotels, getting him used to unfamiliar surroundings other than his home and intervention center.
When I was first diagnosed, my family thought of flying to a first-tier city to see a doctor. After learning from many parties, the family felt that the intervention principles of different institutions were actually the same, so they decided to stay in Wuhan.
After a year and a half of intervention, Feifei's language skills have improved greatly, such as rarely experiencing excessive emotions, and being able to call out his parents and grandparents.
When the old couple is in a good mood, they often joke with each other, and there is really no way for them to take the children to the pension together. "When he is older, I asked him to accompany us to the supermarket and let him carry vegetables and oil for grandma and grandpa, haha, it's also very good."
Grandpa's car has been driving for more than ten years, and he wanted to change to a new car a few years ago, and he has gone to the 4s store several times to see it. If it had been before, he would have bought it without hesitation, but now that he thought that this car could cover the intervention fee of flying for two years, he did not dare to buy it.
According to the survey results of the "Blue Book of Needs of Autistic Families in China", 55.8% of parents believe that the cost of rehabilitation education is unbearable. 47% of the families have a monthly income of less than 3,000 yuan, and 32.7% of the families have a monthly income of between 3,000 yuan and 5,000 yuan. Among the families surveyed, the cost of rehabilitation for children is generally higher than the family income, and the financial pressure of autistic families is very prominent.
Grandma Feifei met a rural grandmother whose children only intervened in the government-subsidized agency for 40 minutes a day because the family could not come up with more money.
The rural grandmother recently wondered whether to take her children back to her hometown, but could not continue to intervene when she returned.
In the current government support policy, the subsidy standards for families with autistic children in different provinces vary, but they are between 10,000 yuan and 20,000 yuan per year. This money is obviously just a drop in the bucket for these families.
What is more difficult to change is the problem of perception. In their eyes, language barriers and social barriers are not a big problem, "children are older than good". They lack understanding of autism and still have the backward concept of "noble people are late".
Rehabilitationist Hao Li told Jiupai News, "In some poor and backward rural areas, if there is such a child, many people may think that he is a fool, don't care about him, just continue to regenerate." The number of children in this category who have not been diagnosed is also very large, so China's social attention and investigation in this regard is very important. ”
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Now, the special attention from friends and family has made Wen Qing feel stressed.
"I don't want Beanie to be the focus of others, nor do I want to accept the sympathetic eyes of others. Just ignore my child and treat her like a normal child. She said.
However, autism accompanies the child's life, and the parents' worries about the child are also a lifetime. Hao Li told Jiupai News, "Parents have different worries at different times, and the solution is to take one step at a time." Parents of young children are most worried about the problem of their children going to school, and older children may not be able to solve this problem, so they have other worries. ”
Wen Qing was afraid that after her lover died of old age, the child would not be taken care of.
She hopes to build a community in China for autistic people, where autistic people and parents come together to take care of each other, understand each other, and have no discrimination or prejudice.
A little different from Wen Qing, Hao Li believes that autistic groups should be integrated into normal society, "If we just let them stay in their own groups and let autistic people only contact with similar people, then our work will lose its meaning." In order to achieve the goal, society must accept them, and there is still a long way to go in the future. ”
A painting by a child with autism. Courtesy of respondents
In Hao Li's view, prejudice stems from ignorance. The discrimination that already exists in society leads parents to choose to conceal when their children are diagnosed, but the less people know, the more others do not understand, the greater the prejudice, and finally form a vicious circle. "If the public knows them better, I'm sure a lot of people will be willing to take these kids." If my child is diagnosed with autism, I hope that the community can give the corresponding support and resources. ”
Once, when playing in the amusement park, he heard the cries of children, and Xiao Hao felt very noisy, so he went forward and hit the other party. The mother of the other child was very excited, pointed at Ren Ran's nose and said: "How do you take the child, so old and bully the little sister, there is really no tutor."
After still apologizing to the other party, he quickly left the scene with the child in his arms. She said that if you put yourself in the position of the mother of a child who was beaten, you can understand the other person's reaction.
She tries to be polite and thoughtful to deal with everything related to the child, if the child has a problem behavior, immediately actively "public relations", she believes that only in this way, the kindergarten teacher, the parents of other children can tolerate her child. "Maybe the child's emotional intelligence is very low, and our emotional intelligence is very high."
One day, the kindergarten teacher sent her a message saying that he was envious of her state. "You know, I never thought that one day I would be envied by others." In the reception room of the Rice and Millet Wuhan Intervention and Rehabilitation Center, renran wore a black skirt and light makeup without losing his spirit, and his body emitted a faint fragrance.
When I was first diagnosed, it was still not as delicate as it is now. She is often caught up in negative emotions and can't lift her spirits at all. After a few years of intervention, the child has made great progress and her state has improved a lot.
Talking about these pasts, her tone was light and breezy, and she kept smiling, as if she had never been in pain for this.
(The names of the children and parents in the text are pseudonyms)
Nine Factions news reporter Zeng Xianwen Yang Bingyu