The biggest wish of these autistic families: to live one day longer than their children

In a school in Hangzhou, I saw a mother standing on the stairs and her child curled up on the side of the staircase, slowly moving down.

As I got closer, I heard the mother calling her child's name softly: "Baby, wait for mommy..." Repeating this several times, the child seemed not to hear me and kept walking down without looking back.

My mother's voice gradually became tearful, hoarse and trembling. It was like a kettle that had just boiled, the sound was not loud, but harsh, making the listener feel uncomfortable.

The child staggered halfway up the stairs, then suddenly stopped and looked to the right, seemingly not seeing anyone. He turned around, raised his head slightly, and saw the woman standing on the stairs, opening her arms to him.

He crawled back step by step with difficulty, stood in front of the woman, and was hugged by her.

This is their daily life, the daily life of a woman and her autistic child.

At present, the number of autistic patients in my country has not been clearly counted. However, according to reports, there are at least 10 million autistic patients in my country, of which 2 million are children aged 0 to 14, and about 150,000 new children with autism are born every year.

Behind the huge amount of data are souls that need attention and families that yearn for understanding.

01 Lonely child and devastated parents Ms. Wang’s child Xingxing was a premature baby, weighing only 2.5 kg when he was born. She and her family thought that raising this premature baby was already a very difficult task, but they didn’t expect that even more suffering was yet to come.

"When Xingxing was two years old, I knew he might have developmental delays. My family is in the education business, and later, my mother and sister hinted that Xingxing might have some 'problems' and asked if we should take him to the hospital for a checkup."

The test result showed that he was moderately autistic.

Ms. Wang's first reaction was, "Oh, this is impossible!" Like many people, she thought Xingxing was just "speech slow". After all, she and her husband were both in good health and had good education. How could it be possible...

Xingxing's father's reaction was even worse. He just left the mother and son in the hospital clinic and ran out in a state of collapse.

At that moment, it was like a bolt from the blue for Ms. Wang and her husband.

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For Xingxing, rather than his parents who were emotionally at their lowest point, it was the uneasiness brought about by the unfamiliar environment that made him more anxious.

He may never know what this day means to him and this family.

"I was still at work and called my friend who was a special education teacher. She yelled at me on the other end, 'Why are you still working? If you don't intervene now, Xingxing will never be able to go to school!'"

"Tell me, how can I accept this fact?"

Although Ms. Wang still cannot overcome the gap in her heart, the three mountains of children, family and career are squeezing her living space every moment, leaving her with no breathing space.

Every day at noon, she would study autism knowledge while wiping away tears; in the afternoon, she would immediately adjust her state and devote herself to work as usual;

The moment before she opens the door when she returns home at night is the most difficult. She has to put on the armor that she should have taken off, or even put on more, just because she has to face a messy family.

"I persisted for about half a year, but I couldn't do it anymore. I couldn't do anything well. It was too painful."

So, she finally chose to resign and began to concentrate on taking Xingxing to institutional intervention to maintain this crumbling family.

The Blue Book on the Needs of Autism Families in China (hereinafter referred to as the Blue Book) mentions that 52.4% of families have one person who gave up work to take care of autistic children, among which 90.2% of families have mothers who gave up work.

Looking at the skinny little Ms. Wang in front of me, it is hard for me to imagine how she fought her way out of that bloody battlefield.

Through her, I seemed to see a woman wearing a crown of thorns and roses but covered with scars, telling me her story calmly and even with a smile.

02 Desperate parents are different from Ms. Wang, who has an educational background. According to the Blue Book, about 47.3% of parents begin to arrange rehabilitation training for their children after they are diagnosed.

"Except for those parents who cannot accept the fact that their child has been diagnosed for a while, most parents are actually facing a situation where they are at a dead end," said Ms. Feng, the principal of a rehabilitation institution in Hangzhou.

"Because I am also a mother, I can especially understand the despair that parents feel when they learn that their child is diagnosed.

Modern people are accustomed to using certain search platforms. When they click on the first item or even the previous page, they see advertisements. The more anxious they are, the more likely they are to lose their judgment.

Especially for parents who know little about autism, it is easy for them to be exploited by unscrupulous institutions.”

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Some institutions target parents' urgent desire to attach importance to their children's cognitive abilities so that they can enter school in the future (in the short term, improving cognitive abilities is relatively easy).

Under the pretext of claiming that the child would be completely cured after a few years of school enrollment, the parents were defrauded of hundreds of thousands of yuan, but the child's self-care and social behavior did not improve at all.

Some organizations also provide loans to parents, asking the whole family to go into debt to pay for their children's rehabilitation treatment, but with little success;

The most unbearable thing is those institutions that make children take medicine, get injections, electric shocks, or even undergo surgery for rehabilitation - others are trying to cheat people out of money, but they are "trying to save their lives."

Behind these naked truths are families with autism who are walking alone. According to the Blue Book, 47% of families with autism have a monthly income of less than 3,000 yuan, while 65% of families have a monthly rehabilitation cost between 3,000 and 8,000 yuan.

Even though parents are under such heavy financial pressure and are walking on the road to recovery with great caution, there are still people with ulterior motives who are sharpening their knives and rushing towards them, treating them as a group of "fat sheep" to be slaughtered.

After peeling the skin, they feel that the meat is not enough, so they have to drink their blood, pull out their tendons and bones, not missing out on any "value".

At the same time, they have to fabricate "beautiful dreams" for parents, so that they will voluntarily lie down with hope and let these executioners bleed.

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Principal Feng mentioned in the interview that autism is a lifelong condition for most children. Due to labor costs and other reasons, rehabilitation education institutions have limited fees.

On the contrary, it is easy for “miracle” treatments such as imported medicines and dolphin music lessons to charge parents high rehabilitation fees.

These detours taken by parents not only waste their own time, energy and money, but more regrettably, the children's precious intervention and recovery period.

04 What should we do with our children? In interviews, almost every parent will ask the same question: When we (parents) get old, what should we do with our children?

After Liangliang's condition stabilized a little, Ms. Hao's parents-in-law repeatedly asked her to have a second child. To some extent, the vision of the older generation is understandable.

But to her, these words were like a blunt knife cutting her flesh.

She said: "Who can guarantee that the second child will be healthy? Even so, if a healthy and lovely child and an autistic child are placed in front of each other, who can be impartial over time?

For Liangliang, he needs 100%, even 120% attention and love from the whole family.

If we have a second child just to ensure that someone will take care of Liangliang when we are old, then it would be unfair to the child.

My husband and I just want to outlive our children by one day."

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According to a Blue Book survey, 72.7% of parents with autism are worried about their children’s future after they pass away.

Ms. Chen told me that during the period when Xiao Caihong was first diagnosed, she would involuntarily start thinking about this matter almost every time she closed her eyes at night.

For her at that time, this was still an almost unsolvable problem, which tortured her to sleepless nights and she cried every night until dawn. After experiencing the torture of self-collapse and depression, she began to adjust herself.

First, she confessed Xiao Caihong's illness to her close friends. The moment she said it, the string that had been tightly stretched in her heart for a long time suddenly snapped and was released.

Then, she began to actively and systematically learn relevant knowledge about autism, shifting the focus of her child's rehabilitation from cognition to self-care and social skills.

She no longer held onto Little Rainbow tightly to practice cognition with cards, or to climb stairs to exercise her body and mind. She would take turns with her mother to look after the child, giving herself, the child and her family some time to breathe, even if it was just to go shopping, watch a movie or change her hairstyle...

She also changed her child to a school closer to home. She went to school for rehabilitation half a day, and spent half a day in the supermarket to learn cognition, walked on the roadside in the park, and tried hard to integrate into this society...

At the same time, Ms. Chen also applied for a disability certificate for Xiao Caihong, so that she could go to a designated institution of the Disabled Persons' Federation for rehabilitation and enjoy a subsidy of 24,000 yuan each year.

Half a year later, Little Rainbow has made significant progress. She can now take care of herself and speak short sentences.

This shows us that even "special" children can bring surprises of love to their parents as they grow up.

"I believe everything will be fine," she said at the end of the interview.

"There is a poem written by a child called 'Choosing a Mother', which is the perfect description of the relationship between me and my child," Ms. Hong told me.

"Since he chose me to be his mother, I must do my best to treat this child well. He may not express it, but as long as he is my child and he needs me, that is enough."

Parents all over the world devote all their efforts to their children. This sentence is also a portrayal of thousands of parents.

Every year on World Autism Day, children with autism are compared to "children from the stars." But for these parents, they are just children living on Earth, living among us.

Maybe in your daily life in the future, you will see parents in the supermarket who repeatedly teach their children to speak but get no response;

You will see parents on the roadside pulling their children who are walking crookedly forward;

On public transportation, you will see parents who cannot control their children's crying and look apologetic to those around them...

"We don't actually want to be a burden to society. A kind smile, friendly eyes, and equal treatment are the greatest support for us."

This is Ms. Hong’s hope, and also the hope of thousands of parents of children with autism.

Then I hope that whatever they wish for can come true.

Acknowledgments: Ms. Wang, Xingxing, Principal Feng, Ms. Hao, Liangliang, Xiao Caihong, and Ms. Hong in the article are all pseudonyms. We would like to thank the above interviewees for their strong support for the article.