from: Autism Research Institute, posted on May 5th, 2023, in Guangdong.

“The earlier autism is diagnosed and intervened, the better the outcome.”

“For a family with autism, ‘how difficult is it to accept the flaws of one’s own child?’ has become an unavoidable and challenging decision.”

"This year (April 2nd) marks the 16th World Autism Awareness Day. On this day, the attention given to autism by the Chinese people has significantly increased.

In the field of autism, grassroots non-profit organizations represent a pioneering spirit. Thirty years ago, dedicated parents established service organizations, creating and advocating for educational resources for individuals with autism. However, today, the drastic changes in the environment and policies have brought many rehabilitative service non-profit organizations to a 'midlife crisis’.

In recent years, with the opening of government subsidies, medical and commercial institutions have been motivated to provide rehabilitation services. In just a few years, the number of institutions has rapidly increased, and the intensifying market competition has squeezed the development space for non-profit organizations. While the increase in rehabilitation institutions provides more choices for families with autism, the challenge of selecting suitable institutions and special education teachers for their children still persists.

As medical and commercial institutions enter the rehabilitation service industry in full force, perhaps it is even more important to pay special attention to the unique value of these non-profit rehabilitation service organizations. In the eyes of industry professionals, these non-profit organizations provide not only rehabilitation services but also continuously explore service content based on the needs of individuals with autism. Particularly, their ability to engage in social advocacy and promote social inclusion will be a key force in facilitating the comprehensive development of children with autism. In an ideal state, they will become resource centers within society, helping connect autism families with community, kindergartens, schools, businesses, hospitals, and other resources, enabling them to reintegrate into social life.

As one pioneering individual stated, evaluating whether a society is developed should not only consider the lifestyle of young adults but also whether the most vulnerable lives are protected."

在广西南宁高新区龙华学校，陪读老师何冬艳放午学后领着她照顾的孤独症孩子准备走出校园 新华社发

No 1. Midlife Crisis

Everyone was waiting for Tian Huiping to speak. She was so popular that the host even suggested that she didn’t have to adhere to the 30-minute speaking time limit.

Tian Huiping is described as a leader in the field of autism and the founder of the first private autism rehabilitation and training institution in China, Beijing Xingxingyu Education Research Institute. For many years, it has been the only channel for confused and anxious parents to understand autism. This time, the organizers of the seminar gave her a cutting-edge topic: ‘Exploring the lifelong support model for individuals with autism in China, service models under the special needs trust.’

“When I saw the topic they gave me, I wasn’t interested,” Tian Huiping spoke sharply, dispelling the weariness in the room. “For thirty years, we have only been discussing lifelong support for individuals with autism at the grassroots level. Where are the national resources?” A few minutes later, she halted the live webcast and criticized the slow progress of the social environment and the lack of support from public policies using even more sharp language. This 66-year-old mother has been contemplating the future of her son, Yang Tao, who has autism, after she passes away. After thirty years, her patience in promoting social progress has worn thin.

“As an onlooker, one may feel that Ms. Tian’s words are somewhat excessive, but I can understand. No matter what I (referring to Tian Huiping) say, nobody listens, and no matter how urgent I am, society doesn’t change. I am almost 70 years old and almost dying, but my child still has nowhere to go.” That evening, the head of a non-profit organization and a Southern Metropolis Daily reporter discussed this speech. “She doesn’t know what will happen if there is an accident tomorrow, who will take care of her child? This is the most realistic problem. The social security mechanism is not sound, there is not enough money, and there are no lifelong service institutions that can accommodate these children.”

As a footnote to this conversation, during the two-day seminar, the heads of non-profit service organizations talked more about the stagnation of industry development and the survival difficulties of institutions.

In China, the rights of individuals with autism to education, rehabilitation, and social inclusion are inseparable from the exploration and continuous efforts of grassroots forces. In the 1990s, parents of children with autism, including Tian Huiping, established the first batch of non-profit organizations in China, filling the gaps in diagnosis, rehabilitation, education, and parental support.

In the following years, institutions in Beijing, Shandong, Guangdong, and other places trained a continuous stream of parents who came seeking help, teaching them how to conduct behavior training and education for their children at home. After returning to their hometowns, these parents began to establish rehabilitation service institutions with a charitable nature to help more local children, providing relevant services at cost.

From a few hundred institutions in 2005 to the support of public welfare foundations like the One Foundation, and now with over 8,000 autism-related institutions, autism rehabilitation has developed into an emerging industry, with both commercial and medical institutions entering the field. However, changes in the environment and policies have brought the first group of pioneering public welfare organizations in rehabilitation services to a “mid-life crisis.”

“I don’t feel very optimistic overall. In the past three years, our service revenue was higher in the first two years, but in 2022, our income was basically cut in half, and the pressure is quite high. Fortunately, we are a relatively established institution with some reserves to cope with, but not all organizations have reserves or the ability to raise funds from society,” said Sun Zhongkai, Executive Director of Star Rain Education Research Institute. According to an industry survey conducted by the Beijing Neusoft Public Welfare Organization Capacity Building and Evaluation Center, with guidance from the China Association of Rehabilitation of Disabled Persons and support from organizations such as the One Foundation, Star Rain, Heart Alliance, Beijing Xiaogeng Foundation for the Disabled, and Shenzhen Watchful Care Association for Families of Intellectual Disabilities, 55% of institutions face financial difficulties, 31% have just enough funds, and only 14% of institutions do not face significant financial pressure.

“I think the pressure might be even greater after the pandemic, which is actually not directly related to the pandemic, but rather due to other policies and changes in the external environment of the entire industry,” said He Chunxiao, head of a public welfare rehabilitation institution in a southwestern province. She is also the mother of an older individual with autism and requests the use of an alias due to her work in a government department.

The impact on charitable rehabilitation service institutions stems from recent changes in the past few years. In 2018, the State Council proposed to establish a “system for assisting the rehabilitation of disabled children,” which stipulated that local governments at or above the county level should include funds for the rehabilitation assistance of disabled children in their budgets, with appropriate subsidies provided by the central government. In the following years, some rehabilitation programs for disabled children were also included in the scope of medical insurance reimbursement.

In the eyes of some industry insiders, the release of policy dividends has motivated medical and commercial institutions to carry out rehabilitation services, leading to a rapid increase in the number of institutions in just a few years. He Chunxiao stated that local disabled persons’ federations and government departments tend to cooperate with medical institutions due to cautious considerations, resulting in a gradual reduction in resources allocated to non-governmental organizations, while commercial rehabilitation institutions have significant advantages in hardware and promotion. Compared with these two types of institutions, public welfare organizations have low competitiveness, with continuous loss of students and teaching staff, significant increase in operating costs, but declining income, and a trend of being replaced. There is a clear sense of crisis in the industry.

One key question is, in the long run, when medical and commercial institutions aggressively enter the field of rehabilitation services, why do we need to pay extra attention to and reassess the unique value of these charitable rehabilitation service institutions?

Ren Shaopeng, the project leader of the One Foundation’s Ocean Paradise Program, which focuses on supporting families of individuals with autism, explained that if charitable organizations are completely replaced, the decades of accumulated knowledge and professionalism in this industry may be completely overlooked, resulting in a tremendous loss in this field. The existence of public welfare organizations complements, balances, and explores solutions to the challenges posed by autism. Non-profit public welfare organizations have lower service-based income, which cannot support all their operational costs. In fact, in order to serve more low- and middle-income families of individuals with autism, public welfare organizations need to invest a lot of effort in resource mobilization and financial support.

“After 15 years of accumulated reflection through collaboration with various parties, we need to take a long-term perspective and approach ‘autism’ from a more diverse set of dimensions. In the short term, it is difficult to find a miracle drug or treatment for autism. Therefore, we should place greater emphasis on improving the quality of life for individuals with autism and their families. This can become a shared goal for all functional departments and social forces to work towards,” he said.

在唯舞街舞俱乐部公益班，一位孤独症患者的妈妈用手机录制孩子学习街舞的视频。 新华社发

No 2. Competition and Chaos

Another core perspective comes from individuals with autism and their family caregivers. The increasing number of rehabilitation institutions gives them more choices, but selecting the right institution and special education teachers for their children remains a long-standing challenge.

Guo Ping (alias), a parent from Jilin, repeatedly mentioned that she was part of the group that had taken many detours. In 2019, her 5-year-old son was diagnosed with autism in Changchun. In the midst of anxiety and distress, she began to explore rehabilitation programs, hoping to help her child recover to “normal” as soon as possible. The hospital offered parent training courses and child rehabilitation courses. Guo Ping regularly attended the former, but the latter was always fully booked, with a waiting list of several days for each session. She worried about delaying her child’s recovery.

Guo Ping heard about rehabilitation institutions outside of hospitals from other parents. She moved to Changchun and started taking her child to trial classes at different institutions. Each institution has its own teaching system and periodically introduces new personalized courses. The common feature is that they all promote the better rehabilitation of certain aspects of children’s abilities, and they are not part of the government-funded rehabilitation projects. Over the course of two years, they left home at 6 a.m. every day and returned late at night, attending different rehabilitation courses at different institutions. Both the child and the adults were physically and mentally exhausted. They spent a total of 600,000 yuan during these two years and had to sell a property from their hometown.

“This is something we have all personally experienced, wandering around like headless flies, trying so-called miraculous methods everywhere,” said Feng Dong, Chairman of the Zhejiang Autism Individuals and Family Association. He is the father of a 20-year-old autistic girl and the head of the Ningbo Autism Parents’ Organization “Xingbao Center.” He has had contact with many families of individuals with autism. In his view, there are many different factions within China’s autism rehabilitation institutions, and they do not see eye to eye with each other or define who is more authentic or authoritative.

A research paper published in 2019 by Assistant Researcher Chen Xiayao from the China Rehabilitation Research Center summarized the intervention methods used by designated rehabilitation institutions nationwide. The research shows that the methods used by these institutions are numerous, and although they are generally good, there are prominent issues such as the need for standardized and unified intervention method names, the need to clarify and integrate certain methods, and the need for further practice and research to ensure their scientific, standardized, and effective nature.

Autism, formally known as Autism Spectrum Disorder (ASD), is primarily characterized by difficulties in social interaction and communication. There is currently no recognized cure for autism, and the main approach is to use behavioral interventions to alleviate the severity of its core symptoms. The term “spectrum” implies that autism manifests in a wide variety of ways and degrees of severity, further complicating its diagnosis and intervention.

Jia Meixiang, Chief Physician at Peking University Sixth Hospital and Chair of the Autism Rehabilitation Professional Committee of the China Disabled Persons’ Federation, explained in a recent paper that during the early stages of a child’s life, the brain develops rapidly and neuroplasticity is stronger. Children may spontaneously improve their symptoms, making it difficult to differentiate between intervention effects and natural development. This is the uniqueness of childhood autism.

“Faced with a functional impairment that may last a lifetime, coupled with various unproven methods in society, parents easily feel bewildered and may even seek misguided treatments,” she wrote.

This is a common mindset: when a child is first diagnosed, many parents still believe that their child can recover and it takes time to accept that autism is not curable. In such situations, many parents are willing to try more expensive and innovative services, and some institutions take advantage of this mindset. Several industry insiders have told Southern Weekend reporters that with increased market competition, the autism rehabilitation field has witnessed exaggerated or false advertising. For example, some rehabilitation institutions use the term “removal of the hat” instead of “cure” to promote their intervention methods, blurring the lines. Some medical institutions even advocate for the use of acupuncture, surgery, electric shock, and other methods to cure autism.

Feng Dong said that one of the purposes of establishing the autism parent organization is to help future parents avoid taking the wrong path. “We will share our experiences with them and advise them that planning for a child with autism should not be based on one or two years but rather on 10, 20, or even a lifetime. We should extend the education period and not be so anxious.”

It took Guo Ping two years to realize that intervention and rehabilitation for her child take time and cannot be rushed. That day, while waiting in the hospital corridor for her turn, Guo Ping saw a teenager receiving intervention in a sand table classroom. The child had been receiving intervention since childhood, and the effects were quite noticeable, which gave Guo Ping hope. However, that day, the child suddenly had an emotional outburst, completely different from their usual well-behaved demeanor.

Guo Ping recalled that the impact of that day finally made her realize that autism cannot be cured. “I can’t describe the emotions I felt at that time. It was like suddenly waking up.”

4月2日，长沙，市民在世界孤独症日主题慈善活动现场观看孤独症儿童主题摄影展。 新华社发

No 3. Addressing fragmented resources

After returning to her hometown, Guo Ping chose a designated rehabilitation institution. To ensure the credibility of the institution, she even stood outside the building for a long time to observe. After an in-depth conversation with the person in charge of the institution, she learned about the government-subsidized rehabilitation programs. In comparison to blindly enrolling in various intervention courses, the key is to choose an intervention method suitable for the child’s age and severity. The teachers at the institution would help her plan an educational program and guide her in applying for government subsidies.

“Most of us parents have gone through this, spending money on rehabilitation without seeing much improvement. Only after coming back, we realize that we need to tailor the interventions to our children’s needs,” she said. “I hope future parents can avoid taking the wrong path.”

Sun Zhongkai and Ren Shaopeng also discussed another issue that deserves attention. The rehabilitation resources in the autism industry are increasing, but they are still fragmented. After a child is diagnosed with autism, there is a lack of a well-coordinated chain of support to help parents access standardized information, find suitable rehabilitation resources, and obtain community support. In other countries, this work is mainly done by non-profit organizations or social workers with government backgrounds. However, in China, it mostly relies on word-of-mouth among parents, and it is difficult for organized parent groups and non-profit organizations to reach families who have just been diagnosed in hospitals, leading to obstacles and detours.

Ren Shaopeng said that there have been discussions within the industry and attempts to publish parent resource manuals and other tools, but it still requires government departments with credibility to take on this work. Currently, there are overall policies in place that have positive significance, but the urgent task at hand is to find ways to promote better implementation and enforcement.

The lack of a systematic, transparent, and authoritative evaluation system has plagued this industry for many years. With intensifying market competition, the aforementioned chaos has emerged and amplified. Industry insiders are also concerned that regional competition will continue to drive up labor costs, resulting in further increases in service prices for families of individuals with autism, adding to their economic burden.

A research paper published in 2021, with Zheng Xiaoying, the Director of the Population Research Institute at Peking University, as the corresponding author, indicates that families with preschool-age children with autism bear a heavy economic burden. The average monthly expenditure on direct rehabilitation interventions is 7,339.48 yuan, accounting for 85.56% of the total family income. Among them, low-income families face even greater pressure in terms of rehabilitation costs, with annual expenses reaching 210% of their income.

Sun Zhongkai has noticed that service prices have continued to rise in recent years. The care for individuals with autism requires lifelong support, and if families exhaust their financial resources too early, the pressure will be even greater when their children grow up. Additionally, in recent years, the development of rehabilitation services has primarily taken place in economically developed areas, while there are still many service gaps in remote and rural areas.

This is also why industry insiders are calling for the protection of autism services to have a public welfare nature.

He Chunxiao emphasized that the entry of medical and commercial institutions into the autism rehabilitation industry has objectively promoted the improvement of hardware and service quality in non-profit organizations. However, the nature of “requiring fees for public welfare” makes it difficult for them to sustain a long-term “arms race.” Sun Zhongkai stated that based on the situation abroad, a reasonable operational model for rehabilitation institutions should involve one-third of revenue from service fees, one-third from social donations, and one-third from government purchases. Reliance solely on commercial institutions places a heavy burden on ordinary families. In the long run, non-profit organizations are still needed to meet the core needs of middle- and low-income families.

No 4. Ensuring dignity

The public welfare industry is also reflecting on the stagnation of self-renewal.

According to Wu Yang, the founder of the Jie’nan Xiaoai Children’s Rehabilitation Center, the impact of the epidemic on public welfare rehabilitation institutions over the past three years can be seen as a diagnosis for the industry. He frankly stated that public welfare organizations have resistance to market competition, which is to some extent related to the damage to their interests. Once upon a time, public welfare organizations pioneered social rehabilitation services for children with autism from scratch. However, nowadays, the majority of institutions focus on the relatively abundant resources in early childhood rehabilitation, with few exploring areas of urgent social need, such as services for older age groups, where resources are scarce.

“Whether it is public welfare or commercial, the core point is whether the needs of the service recipients are at the center or whether it is driven by resources, doing whatever can make money. Some people are confused about what they are doing now,” he said. “People in the public welfare industry need to stand up and reflect on 'who am I, really?’”

In Ren Shaopeng’s view, public welfare organizations have always adhered to their original intention of responding to the lifelong needs of individuals with autism and continuously exploring innovations, despite the immense challenges. Currently, some institutions have started positive explorations, although they may not be large in scale. They have made breakthroughs in areas such as services for older age groups and community integration, which are worth learning from by various types of organizations.

Zhang Yan and her Hangzhou Qimingxing Children’s Rehabilitation Center are one of them. This organization was established in 2005 and has been providing rehabilitation services for young children with autism. Zhang Yan has been following up with batches of children who have grown up and left. At that time, resources for autism rehabilitation were scarce, and most families had to gather in big cities to seek services. Zhang Yan noticed that when these children returned to their hometowns, it also meant the end of their rehabilitation. Without ongoing support, their abilities gradually weakened, rendering the intervention work of the past decade “in vain.”

“Most people think that children’s rehabilitation can make a lot of money, so they rush into it. No one tries to change policies and the environment. Even though parents of young children are willing to invest money, they still cannot see where their children can go in the future. Everyone is very anxious,” she said.

In 2015, she decided to try adult autism social services, but her peers advised her against it. At that time, child rehabilitation was receiving increasing attention from the government and families, and resources began to flow in. In contrast, adult services were still in a pioneering stage in China, with fewer relevant policies, and parents were not necessarily willing to pay. In that year, Zhang Yan went to Taiwan to study the model of local day service centers. Different from children’s rehabilitation, small-scale and community-based institutions were more conducive to the social integration of adults with autism.

In 2016, the Qimingxing Children’s Rehabilitation Center launched its first adult service point, “Mingxing Workshop,” bringing the Taiwanese model to Hangzhou. In addition to handcrafts, baking, and other projects, teachers also took everyone to community libraries and gyms to participate in community activities every week. They also encouraged service recipients to invite community residents to have lunch together at the service point. These activities directly created opportunities for them to interact and communicate with society, without having to “hide” at home. Initially, community residents were curious about what Mingxing Workshop was doing, and some were even afraid. Now, residents have become accustomed to the presence of these special individuals.

Feng Dong in Ningbo has a similar experience. The Star Baby Center collaborates with Cainiao Logistics and employs individuals with autism to handle the delivery services in the community. This not only solves the problem of employment but, more importantly, allows the children to naturally appear in community life. In the future, he hopes to take over more small shops and provide places for individuals with autism, creating more opportunities for interaction.

“We didn’t deliberately emphasize the identity of autism. We want to gradually make the children seen through these methods and let the community residents naturally know them in their daily lives,” he said. “Nowadays, there are not many people in the community who will give them a second look.”

In his view, the “not giving a second look” is a relatively ideal state. By creating channels, individuals with autism, who should have appeared in the community, can actually be present in the community.

However, these projects that embody the concept of social integration can only be carried out on a small scale. The existing social resources are not enough to support the expansion of pilot projects. Zhang Yan explained that the current fee structure cannot cover the costs of teachers and venues, and there are not many government-funded projects. More funding relies on social fundraising to “subsidize household expenses.”

At a recent seminar, Tian Huiping recalled the scene when she first founded Star Rain thirty years ago. Autism entered the public view for the first time, and a journalist asked her, as a foreign student, if it was worth sacrificing so much for the children.

There is a saying in autism families that the parents’ biggest wish is to live one day longer than their children. The background is that individuals with autism rely on external support for a long time, but the current social environment lacks such services. Many times, parents are their only reliance. This also makes parents generally worried about what will happen to their children once they pass away.

Tian Huiping criticized the idea of “living one day longer.” She believes it is a regression of civilization. If disability is seen as a life condition, anyone can enter this condition at some stage in life, and ensuring the dignity of life is extremely expensive. It is a responsibility that the whole society should bear and “requires financial support.” She emphasized that when evaluating whether a society is developed, it should not only consider the living conditions of young and middle-aged adults but also the protection of the most vulnerable lives.

It is like what Tian Huiping said thirty years ago in response to the journalist: Only when the dignity of life, like that of Yang Tao, is guaranteed throughout China, will my Yang Tao be safe.

Reprinted: Southern Metropolis Daily

Written by: Southern Metropolis Daily reporter Song Chenghan

Edited by: Liang Jianzhong