Author | Lingzi County
Edit | Lin Xiu
April 2 is World Autism Awareness Day. Autism, also known as "autism," is a congenital developmental disorder whose cause is unknown and there is no cure.
The data shows that the prevalence of autistic children in China is 1%, and the slightest probability of falling into each family will become a family carrying a heavy life. What is even more painful is that parents want to stare at their children's life that is destined to be more difficult than ordinary people, but they cannot help him.
Today, technology may offer the possibility of using algorithms to intervene in the collection of growth data on children with autism, using big data to find regular intervention strategies, and providing a more sophisticated, long-lasting, and instructive assessment reference.
ALSOLIFE is the first digital assessment and intervention system for autism with independent intellectual property rights in China. Its founder is the father of three autistic children.
In May 2016, after an industry conference, Zhang Zhiguang waited for Guo Yanqing. Guo Yanqing is a professor at the Sixth Hospital of Beijing Medical College, with more than 20 years of experience in the field of autism, and the chairman of the China Branch of the International Association for Applied Behavior Analysis.
Zhang Zhiguang's son, Bubble, is an autistic. At the time, Bubble was 3 years old and less than a year after his diagnosis.
Bubbles loves to tear paper at the age of 1. Zhang Zhiguang remembers that when watching the movie "Rain Man", Bubble sat next to him and tore the paper, and he could tear it like this all day. In hindsight, this is typical of the behavior of children with autism.
In 2015, the two-year-old bubble was diagnosed at the Sixth Hospital of Beijing Medical College. At that time, the "abnormality" of the bubble could not be ignored: this cute little boy was always on his own, and he almost never responded to the guidance and teasing of his relatives.
The male protagonist of "Rain Man" is an autistic person, and so is Bubbles.
Stills from the Rain Man movie
In medicine, the standard definition of "autism" is: congenital lack of logical thinking ability such as summary, induction, analysis, and judgment, and patients have a lifelong mental retardation. Zhang Zhiguang, a science and engineering graduate, described it this way: "If a person is a computer, a child with autism does not have a keyboard and graphics card."
People with autism cannot feel the environment, receive information, and understand and express themselves the way the average person does. This is a special "factory setting" for children with autism that will last a lifetime.
At that time, the couple carried bubbles from one institution to another, listening to lectures; but they became more and more confused, and the industry was still very primitive, and there was no mature institution or method.
On that day, he hoped to find out whether it could be put into practice by visiting Guo Yanqing, a senior autism professor who proposed the ALSO theory of autism intervention in 2012.
What is ALSO? O is the ultimate goal, Occupational and independent-living skills, and A, L, and S represent the six modules trained for this goal: Academic and cognitive, Living and life, Social interaction and social regulation）。 The purpose of the theory is to develop a guiding path for autistic people from childhood to adulthood, and all interventions lead to skills that enable children with autism to be able to rely on themselves, rather than a very vague concept: "learning.".
Guo Yanqing said in his reminiscence article that at that time, ALSO was just a direction. He proposed that ALSO is aimed at the state of the market of autism institutions are different, the teaching goals are scattered, it is not a training technology itself, it is not a teaching method, it is just a concept, an expectation.
That day, the seed fell on the ground.
01 Confused
If you want the artificial intelligence to recognize the "cup", you must collect a variety of cup pictures and tell the algorithm that these are "cups". If the training samples are insufficient, it is difficult for the algorithm to identify when encountering a strangely shaped cup.
Although algorithms can swallow massive amounts of data, it is difficult to have childlike intelligence because they do not have human "migration" and "generalization" capabilities.
Liu Daiyue pointed to the ceramic mug on the table and told me that for a child with severe autism, you teach him that this is a "cup", and the next time the child encounters a glass, he may not be able to recognize it, and they lack the ability to "migrate" and "generalize".
Liu Daiyue is also the father of a pair of twin girls with severe autism, and before he and Zhang Zhiguang started "That Plan", he had been raising his daughter alone for ten years.
A year, ten years, or a lifetime. Outside of the medical concept, every parent has a unique description and feeling about what autism really means. As a senior engineer, Liu Daiyue, who served as an executive in the world's top 500 in the communications industry, recalls this.
"At that time, Baidu was still very kind." In 2007, he and his wife took Ke Xin Keyi to the hospital, and when they heard the doctor say those three words, "There was no special feeling at all..." and "We have never heard of this disease at all!" Immediately, they learned the "truth" from Baidu, and both husband and wife cried.
We talk about children with autism being called "children from the stars", often portrayed as a special group of people with disabilities, but often with superior strengths. Liu Daiyue burst out laughing, "Most of them really don't have any special skills, and they can't do anything." (Although her daughter Keyi's painting had just appeared at the closing ceremony of the Paralympic Games.) ）
For all autistic parents, accepting reality is not an easy process. Liu Daiyue said that when he thinks about it now, he should have let his daughters go to special schools earlier, rather than spending a period of time trying to get their daughters to go to ordinary schools. Today, he tells other parents about his experience that their children may not be suitable for kindergarten. But he found that parents still try to do so.
The moment the diagnosis comes out, parents of children with autism are told to intervene early — that is, to take their children to a professional intervention center for special behavioral instruction.
"Autism" is a broad spectrum, and each child who falls into it has different ability defects and behavioral disorders. A medical certificate only answered "yes or no", so the parents were at a loss: where is my child's developmental backward compared to ordinary children? How to make up?
When I met Zhang Zhiguang, one of Liu Daiyue's daughters had grown to 12 years old and were getting older. He often wondered, in the future, in addition to leaving some money, what else can he do for his daughter?
They didn't have time to grieve and be dazed. Multiple studies have shown that the golden age of intervention in children with autism is between 3 and 6 years old, and early intervention has a more significant improvement effect on their behavior and cognition. Once the "golden period" is missed, the intervention will be half the work.
But what is coming is the chaos that has been accumulated by the "special education" industry for a long time.
After the twin daughters were diagnosed, Liu Daiyue took them to a one-on-one course. Sometimes the institution changes a new teacher, and he will obviously feel the gap in teaching level. When he inquired after class, he learned that the new teacher simply trained for one week, observed for another two weeks, and then began to start classes. He muttered in his heart: Is there no standard for special education?
In his work, Zhang Zhiguang collects tens of millions of data from the Internet industry every day to analyze people's behavior. But now, he saw the teacher who came to the house to evaluate the bubbles and used a calculator to calculate the child's various values on a scale. "The entire industry is still in an extremely primitive stage of informatization." He sighed.
Also, it is obvious that just like the ordinary child's learning and further education path, autistic children also need to have a long-term learning plan to care for and measure their growth, but such an ideal plan does not exist in the industry, and parents can only expect their children to meet an experienced teacher.
Good teachers are hard to find. Many parents of children with autism have to turn themselves into special education teachers.
In 2019, the reporter of The Southern Metropolis Daily once did a survey of the current situation of the special education industry, and the conclusion was that the industry's unprofessionalism and lack of qualifications have formed a widespread chaos.
From the perspective of institutions, such a reality is also full of helplessness, and under the irregular competition pattern, small institutions face various difficulties.
"For the Son", Zheng Bin, the father of autistic child Feng Fengfeng, once ran an institution that operated at a loss for 6 years on a semi-public welfare basis, and finally sold it to a businessman in 2017. Because of the low salary, the mobility of teachers is very large. Key teachers are constantly being poached by large institutions with high salaries. After the businessman took over his institution, he renovated it, raised prices, eliminated full-day classes (which were not as cost-effective as recruiting two half-day classes), and continued to expand enrollment.
At present, there are only a few hundred certified behavioral analysts in the country, and compared with the 2 million confirmed children aged 0 to 14 years, this help is no different from dripping water into the river, and the gap in future intervention needs will only become larger and larger.
Another issue is money, and autism interventions require a lot of energy and money from a family. In 2021, ALSOLIFE, together with the China Association for the Rehabilitation of persons with Disabilities and the Institute of Population of Peking University, launched a survey in which 56% of the 8,103 families surveyed had one of them quit his job to take care of their children full-time. The average monthly intervention cost per household is 6950 yuan. Zheng Bin opened a new institution three years ago, and with an hourly fee of 300 yuan, "the overall thin profit will continue to operate", but such a price is already a heavy burden for most families with children.
Zheng Bin's son, Feng Feng, is 14 years old. When I talked to Zheng Bin about this, every 5 minutes, Feng Feng would open the office door to find his father.
02 Envisage
This may be how every child with autism feels in the family. No matter whether they are mild families, serious families, or what kind of family situation, they will reach a helpless moment in the process of rushing to seek medical treatment. In 2016, Zhang Zhiguang and Liu Daiyue met another founder, Qiu Dad, and they began to think: Is it possible to change all this? Qiu Dad is also the father of twins with severe autism.
Several fathers, who are from science and engineering backgrounds, plan to use algorithms to build a platform where parents can record their own data on their children's growth.
The original idea was twofold.
First, establish a complete, long-term growth plan. In other words, this plan can guide parents to intervene at home for a long time, it does not need to rely on a certain institution, and it will not be interrupted because the child changes an institution or even a teacher.
Second, the system is able to continuously collect data and optimize iteratively through data.
Such tools are not absent in the market, and Zhang Zhiguang initially wanted to introduce a set of foreign assessment scales and implement them with a digital system. However, after asking the manufacturer, he found that the terms of such software are very strict, do not allow arbitrary modifications, and must be charged per person and per time. Zhang Zhiguang himself comes from the big data industry, and he knows that if data cannot be obtained on a large scale, it means that the system cannot be optimized according to data. So he decided to develop it himself from scratch.
The team was stuck in a difficult situation when it came to building the system. So they found Guo Yanqing with the draft system website. After reading their "draft", Guo Yanqing reminded him that if a system is established based on the ALSO concept, no matter what the future goals are, it will go back to childhood training, so how to prove that the ability to dismantle in this process is correct?
According to also theory, the ultimate purpose of intervention is to give children the ultimate ability to live, not to learn for the sake of learning. For example, teach children with autism to recognize red and green in order to be able to understand traffic lights. That's the goal, and the capability dismantling is achieved based on the goal.
After returning home, several fathers began to investigate. In the future, people with autism can work in some simple jobs, such as car washers and tally workers. So they looked for the employment materials of previous autistic people, found 12 types of jobs suitable for autistic people to practice, and did ability splitting. To analyze whether it was realistic, they compared the results with relevant job descriptions on the employment website. Liu Daiyue recalled that they used reptile technology to sift through websites like 58.com.
After that, he showed these to Guo Yanqing and won his approval.
This became the philosophy of the later ALSOLIFE system: from beginning to end, the real life expectation of an autistic child is to be able to do a simple job and live basically self-care. Well, as long as the "life credits" are effectively designed and there is a coherent curriculum, such expectations are not unattainable.
The system is designed in two ways, one is to continuously split downwards according to the skills needed by children with autism in their future lives, and complex skills are always composed of multiple simple skills; the other is to compare them according to the developmental milestones of normal children.
After more than a year of experimentation, in February 2017, the first generation of the ALSOLIFE system went live. It is a system for parents of 2 to 6 years old to self-evaluate, with more than 500 competency items divided under 6 modules.
Zhang Zhiguang remembers that the server crashed on the first day. For a long time afterwards, to prevent overloading the server, new parents needed to get an invitation code to enter. Since the invitation code is in short supply, "for a long time the invitation code can be bought on Taobao".
03 Road
Today, 5 years later, the system has 320,000 users.
For the first year and a half, the system was opened up in the form of a public good. In the second half of 2018, the team decided to commercialize. By then they had realized that business could take this far.
To go further, it is necessary to obtain more data to improve the algorithm; more sufficient funds and manpower to support the iteration and improvement of the system, all of which need to be realized under the premise of creating profits.
"Business means the highest efficiency, and at present, the innovation ability of the public welfare is insufficient, and the problems of the autism industry must be solved by innovation in technology and efficiency." Zhang Zhiguang metaphorically said that the field of autism is a hot playground with too many things to do. If you take a glass of water to pour, you can't effectively concentrate resources, and the water will evaporate quickly.
Entering an immature industry, what should be the path to sustainable commercialization of autism interventions?
They quickly found their way. In 2019, several fathers took the ALSOLIFE system to the YC China Fall Entrepreneurship Camp, standing out from more than 1,700 applications as one of the 22 entrepreneurial projects supported. Working with Lu Qi's team for three months also allowed ALSOLIFE to determine the positioning and development direction of the future organization.
In 2019, the first ALSO IN offline center opened in Zhengzhou, and at present, ALSO IN offline rehabilitation institutions have opened 8 in different cities. Offline center, the essential teaching tool for all teachers is the iPad, which is loaded with a system for teachers to use.
When a child enters school and the teacher helps the child to complete the assessment, he receives from the system the items that can be taught that day. For example, the action of "looking at the teacher for a toy" may require a teacher to educate the child many times to form an effective memory. In this process, the child's performance in each round, the teacher will enter the system, the "system" will continue to collect autistic child in the project subdivision trajectory. Day after day, the data of 1 child, 10 children, 100 or more children is continuously uploaded, and these trajectories will precipitate into a reference program.
AISOLIFE's office in Beijing | Photo by Geek Park
This is a path from online to offline and back to online. Online, strive to promote the system, accumulate users and data. On the other hand: the offline intervention center records the daily intervention data of each child, which can be fed back to the algorithm, so that the algorithm can formulate the learning plan more accurately.
Now, the "system" operated by the offline center can generate more than 300,000 pieces of data per day.
Now, with both qualitative and quantitative data, the system has the potential to be the best planner, and no teacher's experience has been able to deposit such a large sample.
When a child's learning data accumulates, his learning plan will also adjust accordingly. Ideally, the difficulty setting of the curriculum should best fit the child's ability growth curve, that is, the "best path" for the child's ability to grow the fastest. Unlike ordinary children, autistic children do not express "this is too difficult" and "I already know this, I don't have to learn.". Therefore, only by using data to keenly capture each learning performance can it be possible to plan this path.
Now, people describe autistic children as "a thousand faces". However, in Zhang Zhiguang's view, when the sample volume obtained through offline institutions is large enough, more laws may be found. Some children with similar characteristics become "subtypes", so that each type of child will be more effectively matched with the corresponding treatment plan. The road is still very long.
04 Future
Speaking of the entrepreneurial process, Zhang Zhiguang said: "We are never discouraged, because we are naturally optimistic. The innocence and innocence of children make each of our childhood infinitely prolonged."
But starting a business is not easy after all.
Due to the heavy pressure, Liu Daiyue once wanted to quit. Once at dinner, Zhang Zhiguang chatted with Liu Daiyue, who was 10 years older than himself. "I said that there is no point in us making money now, the important thing is that everyone should form a synergy and finally solve these things for the children." 」
"I can't spend money on longevity, but we can build a system where younger people keep taking on the responsibility and perpetuate such a system, which must require tremendous faith support and a very perfect system to protect." 」 He said.
After Bubble was diagnosed with autism, Zhang Zhiguang would say to his son every night, "Bubble, Daddy likes you, Daddy loves you." During the period of hard work on the ALSO system, every day before going out to work, he would pound his fist on the chest and shout "definitely work hard".
Currently, one-third of ALSOLIFE's employees are parents of autism. ALSOLIFE's advocacy of "Your Life is Also My Life" is the truest voice of parents of children.
After becoming entrepreneurs, Zhang Zhiguang and Liu Daiyue are also watching the changes in the market. In 2020, for example, a game called EndeavorRx was approved by the U.S. FDA (Food and Drug Administration) as a prescription therapy for ADHD in children. This was the first approved digital therapy, which inspired ALSOLIFE to intervene online in the form of a "game".
Screening and diagnostic systems refer to the use of AI image recognition and analysis technology to assess children's behavioral characteristics. This provides a possibility for remote diagnostics. Parents upload videos at home as requested and fill out questionnaires so that screening and diagnosis can be made. Moreover, this system also hopes to assist general doctors in non-first-tier cities to improve diagnostic capabilities and help children with autism diagnose diagnosis as soon as possible.
ALSOLIFE also hopes to achieve the teaching of some content through games and human-computer interaction. This allows children to consolidate at home by playing games, which can not only further save the cost of intervention, but also serve as a partial replacement, supplement and reinforcement function for offline teaching.
There will be more possibilities and more changes in the future. They also envisioned that if VR was mature enough to create a social scene, children could repeatedly practice specific interactions.
Bubbles are the source of Zhang's light. Talking about life after the bubble, Zhang Zhiguang's tone became gentle. He recalls that since college, he has rarely spent time with his parents, but Bubble may have to be with him for the rest of his life. "I've been with him all my life... My main sadness is what happens after I die, or when I am incapacitated?"
From that Monday, Zhang Zhiguang came to this moment. That day, Bubble was diagnosed. A week later, the family moved across Beijing, from outside the East Fifth Ring Road to the Southwest Fourth Ring Road, next to the intervention agency. Bubble's mother got her driver's license the day before her son was two years old. The move was her first time on the road, and just out of the neighborhood, she crashed into a bus passing around the island. Since then, the family's life has also sailed in a new direction.
This is also the reason why Liu Daiyue resigned from the communications industry. At present, some parents are already exploring the problem of elderly autism resettlement, such as the "Star Town" in Jinzhai, Anhui Province, where a group of parents bought a piece of land in the countryside and hoped that it would become a "utopian community" for autistic families. Some parents in Shanghai have tried to form a social organization to find a sustenance for the second half of their children's lives in the form of "intended guardianship".
ALSOLIFE currently only deals with the intervention of young children, and the three founders have agreed that if the company has a profit in the future, it can set up a fund to explore the problem of older placement. This is a more funding-intensive thing than a young age intervention, but other issues are far more complicated than money.
In the interview, I asked these parents, is there a moment when the child surprised you?
Bubble's mom recalled to me that she is now a senior teacher at ALSOLIFE.
"One day in May 2020, 7-year-old Bubble ran to the kitchen and took a piece of bread, smiled and handed it to me, and I said you want me to eat it?" He handed it to my mouth, and I took a bite, and then he happily went to eat and play by himself."
It is very difficult for an autistic child to take the initiative to express care for parents. When I said this, my mother herself was a little dazed, she said, she did not know how Bubble understood this matter, is it that she thinks the bread is delicious, and wants to share the bread with her mother? The only thing she was sure of was that it was not easy for Bubble to make this move. "I thought it was a big surprise." She said, and heartfelt joy.
Two founders, fathers. Liu Daiyue and Zhang Zhiguang are both typical science and engineering men. After the interview, I looked at their backs, both of them with stiff shoulders and seemingly high and low shoulders.
They hurried home, rushed to see the children.
(Zheng Bin is a pseudonym)
Editor's Note:
If the Internet of twenty years ago was still a baby in its infancy, after rapid development, the Internet of Science and Technology has become a muscular young man - people from yearning, hope to vigilance, and even fear of its huge power - technology in addition to transforming the old world in a cheerful run, but also ushered in an era that needs to take more responsibility for the new world.
Technology should not just be a consumer product that is accurately pushed again and again, creating a black hole of time one by one, and its mission should not be an infinite "growth game" and a "fishing" for user data, but should return to "people" itself.
Geek Park focuses not only on "new technology", but also on "heart technology" - Tech with Heart.
We have found teams and people who are using technology and innovative ways to create a higher "ROI" for society.
This is the 15th article planned by "Heart Technology".
*Header image from Evan M. Cohen
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