What will happen to China’s autistic adults when their parents pass away?
According to estimates from China’s autism education sector, there are around 10 million autistic people in the country, 80 percent of whom are over the age of 14. Worldwide, the disease is poorly understood and has been widely diagnosed only in the last two decades. China has around 2,000 education facilities for children with autism, and has started providing government subsidies for families with autistic children, but these benefits are typically only available to autistic children under the age of 7.
Early detection and education is considered key to helping autistic people live independently as adults, but many families who had no access to government benefits and educational resources in past decades have had to figure out their own ways to raise their autistic children and teach them life skills. And after a lifetime of providing care, parents are still haunted by the question—what will happen to their adult children when they are no longer around?
Mr. Ma, father of an autistic 27-year-old
I once took my son, Ma Xin, traveling to see the beautiful landscapes in Guizhou. He was happy. We went hiking in the mountains. He was a strapping young man of 23, always running ahead, so I quickly lost sight of him.
I followed behind slowly, and whenever I reached a bend in the road, I saw him sitting there waiting for me. As soon as he saw me, he’d take off again. It’s the same when we walk on the beach: Whenever he sees me lagging behind, he’ll turn back and pull me along. Sometimes he’ll throw an arm over my shoulders and the two of us will walk together. Whenever we go out, he always carries the heavier items for me.
That was when I first felt my son had grown up. He no longer ran off whenever he felt like it. He was thinking of me and knew he had to wait for me.
The idea to travel came to me when I had heart surgery in 2016. The preoperative evaluation included a long wait. As I was lying in bed with nothing to do, I thought over the last few decades of my life. It was no easy feat raising my son day after day; and now, the time we had left together was also dwindling, day by day.
There is delicacy to being a patient. You feel helpless, realizing that many things are out of your control. I was already 57, and my energy would only be diminished going forward. If I didn’t spend quality time with Xin now, I would surely regret it by the time it was too late.
In the 20-some years since my son was diagnosed with autism, I was always his primary caregiver—taking him everywhere for therapy to correct his stereotypic behaviors, teaching him new things, essentially trying to force-feed him new information. I was never able to express my love through everyday actions, or nurture a father-son bond. I was also never able to show him the wonders of our country’s mountains and rivers, its great plains.
If Xin hadn’t been autistic, we might’ve been like brothers. But his condition doesn’t allow for that, so I have to take good care of him as a father.
My recovery from the surgery was fairly smooth, and I wanted to seize the moment to travel with him. No more forcing him to learn this and that. I only wanted to show him the beauty of the mountains, the blueness of the sky. I wanted to show him where the big trees are.
With his mother’s support, the two of us set off together on this quest of “mutual survival.” My only complaint is that, if it weren’t for this pandemic, we might have gone to even more places in the past two-and-a-half years.
A cozy nest
Recently, we rented a 40-square-meter one-bedroom apartment under Xin’s name. He’s 27 now, and every morning he comes to the market with me, goes for a walk, and interacts with people in the community. I’m still reluctant to let him go, but after another five or ten years I might consider finding him a cozy “nest” of his own.
This isn’t to say I want him in just any care home, where they just provide food and water. I want to find a place that understands and accepts autistic people. As an autistic adult, he needs care, but he also needs to find work that’s within his capabilities. I don’t expect him to have a career or make much money. But if people ask him, “Ma Xin, what are you doing?” and he can respond, “Working,” then I’d feel very warm inside.
Tian Huiping, mother of an autistic 36-year-old
My name is Tian Huiping, and my son is called Yang Tao. He is an autistic 36-year-old.
Story FM: During the 1980s, Tian founded Stars and Rain, China’s first nonprofit organization supporting the families of autistic children. She also introduced a behavioral training system for improving the quality of life of autistic people in China. Tian is by no means a born entrepreneur or expert in autism education; she is only the mother of an autistic person.
I started to panic about what will happen to Tao in his old age the day he was diagnosed.
I knew that one day I would get old and die, and my child would no longer be able to rely on me. My goal is that when I’m no longer around, when I can no longer support him, Tao will still be able to live a smooth, peaceful, and dignified life. If I wanted to fulfill this goal, no amount of sighing, blaming, or praying would do me any good.
I wanted my child to be easy to care for, able to be accepted both by his family and by strangers. I hoped that even ordinary people with no experience in autism care will be able to take care of him. Do you know how much I’ve done to prepare for this?
Learning to take the bus
In 1993, I was squeezing onto Beijing buses with Tao.
Tao weighed 4 kilograms at birth and was always a chubby kid, while I’m not a strong mom. When I took him on the bus when he was little, people would give up their seats. But the trouble started when he got a bit bigger.
One weekend, when I took Tao on the bus, nobody offered him a seat. So he sat his butt right down in a young man’s lap. This is how autistic people are; there are the social rules they have to learn. Inflexibility is one of the hallmarks of the condition.
At the time Tao was only 8 years old, so the young man just felt a little embarrassed and let him sit. But because I understood the nature of autism, I knew this was no small matter. I thought, what if he does the same thing when he’s 18? What if it had been a woman?
It was during the weekend, and I had Tao get off with me at the next stop. Back then, Beijing’s West Third Ring Road had three or four bus lines. I didn’t care which line it was, or where we were originally headed—whenever I saw a bus with no free seats, I would get on with him.
When an autistic person doesn’t understand a social norm, I have to help him learn it. So I would pull Tao onto the bus, have him hold on to the back of the seat, tell him “great job, that’s the right way to do it.” Then we would get off. This was one round. When the next bus came, we’d get on again and repeat the process, and get off at the next stop. Some kids only needed three rounds to understand, while others needed three months of continuous training. By following this method, by the second half of third grade, Tao was able to use a monthly pass to take the bus on his own.
Did you think this sounded easy?
I once took him on the bus. Things were off to a good start, as he was able to hold on to the back of a seat and stand. But then, somebody sitting at the front of the bus got off. Since they were so far away, I didn’t even notice that a spot had opened up. But Tao rushed for the seat, shoving people aside. Because the rule he had learned was, “If someone stands up, then I can sit.”
This incident reminded me that there is a set of interaction norms that guide our individual behaviors, but autistic people don’t realize this intrinsically. So I started training Tao from ground-up.
By now, Tao’s bus-riding etiquette is textbook. When he gets on, he doesn’t grab onto the back of a seat. Instead, he’ll first grab a center pole or a ring, and make sure he’s steady. If somebody next to him stands up, he waits a moment to see that nobody else is trying to sit; only then does he sit down.
This is the exhaustive type of training I did for every facet of life, back when the two of us were squeezing onto buses in Beijing. This is what makes everything manageable when we travel together today.
What will happen when I’m not here anymore?
Through our long journeys together, I raised Tao into a person who can basically take care of himself. But even though he is now relatively easy to look after, I can’t take care of him his whole life—who will care for him in the future?
I started thinking about this in 2010, and by 2012 I had drafted my first will, naming the people who would care for Tao and manage his finances after my death. Whenever I update the will, it goes on file at Stars and Rain, to be executed after I pass. Someone knows how to open our family safe, as well as the location of my will. I made these arrangements when I was only in my 50s, because if I didn’t plan while I was young and clear-headed, it would be too late if I suddenly died.
However, a lawyer friend of mine told me that this will was not legal. It turned out you couldn’t simply entrust your child to whoever you want. The guardian had to be part of your family: for example, a brother or sister, nephew or niece. But because I’d raised him as a single parent, Tao hadn’t had contact with his father’s side of the family for over 20 years.
I didn’t know those people and they didn’t know Tao, so of course I didn’t trust them. When they received guardianship of Tao, they would also be getting the inheritance I left him. The new Civil Code finally gave me a chance to legally designate a guardian for him while I was still alive.
At the beginning of 2021, China’s newly-revised Civil Code took effect, improving the adult guardianship system. Created for adults like Tao with limited capacity for civil conduct, Article 29 allowed me to designate a trusted person or organization as my son’s guardian in my will.
This legal change opened new possibilities for my end-of-life planning. It gave us the chance to plan for our children’s futures. We must give our children resources from an early age, and give others the chance to know and understand them, so that they can be liked, loved, and accepted.
Story FM: In 2021, through the advocacy of many families of people with developmental disabilities, several Chinese trust providers have established special-needs trust funds. Historically, trust funds had high barriers to entry, requiring a large initial capital contribution. But the barrier is lower for charitable trusts. As soon as the special-needs trusts were launched, Tian signed a trust agreement. This way, guardianship and property rights would be separated: A guardian would make decisions on behalf of the child, while a trust would provide the money. This ensures that the inheritance would be used to provide for the child.
This separation of power and money is a good thing—the truly scientific approach is separating responsibility and power. Now that China has set up trust accounts for people with special needs, I can deposit Tao’s money in one of those accounts. After I’m gone, the whole system can be set into motion.
I call Tao’s care team the “Yang Tao Support Group.” They have work meetings, reimbursements, and administrative systems, and are able to plan out his schedule day and night, leaving no gaps in the picture.
Tian spent half her life training her son into an autistic person who could function with an ordinary caretaker. Now she’s in her 70s, and the necessary legal framework has finally become available. Only one question remains: What would Yang Tao do with his long life ahead?
For now, Tao helps me around the house during the day. It’s important that he has some substance in his life, if not necessarily what we would call “work.” But I don’t hold out much hope in that respect. I only want to make it so that when I’m gone, he’ll be well cared for.
Once the issue of guardianship and inheritance are addressed, the parents of autistic adults come to another hurdle: More than simply surviving, they want their adult children to be able to truly live, to have their own passions and pursuits.
Yu Hua, mother of an autistic 27-year-old
My name is Yu Hua, and I’m 53 years old. I have a 27-year-old son named Xiaoman, who has moderately severe autism.
Ever since he graduated from the Pui Chi School (a school in Hong Kong for students with moderate disabilities) at 18, I’ve been trying to figure out where autistic adults can go next. With five other moms, I started a day school where our children could have enrichment and professional guidance. This way, they would have a new place to go during the day and wouldn’t have to be cared for at home.
But the day school format wasn’t a long-term solution. The school was far from our home. Every day, I had to drive three hours round-trip to take Xiaoman to and from school, on top of caring for my own parents, who were in poor health. After a while, not only did I feel physically and emotionally depleted, but Xiaoman also developed mood and sleep problems.
Before my mom passed, she was concerned about Xiaoman whenever she was lucid. She worried that once she was gone, nobody would be able to help me. She actually wasn’t all that old when she got sick, only 68 or 69.
Her passing abruptly reminded me that nobody knows when they will encounter illness or death. And when it comes, there may be nothing you can do to stop it. It is certain that someday I’ll get old, that I’ll get sick, and I’ll neither be able to care for Xiaoman nor myself.
I had to think further into the future: What kind of place will allow Xiaoman to live a long and peaceful life without me?
Caring for adults
I visited a few care facilities, but some of them didn’t have enough daily activities, while others had even been asked to move by their landlords. All of this made it impossible for me to entrust my son to them.
To my mind, the ideal place was Japan’s Zelkova Home, a care facility for autistic adults. The facility was established in the 1980s with funds raised by a group of parents. When I visited in 2009, I was amazed at the living conditions of the residents there.
There was a woman in her 50s whose condition was very severe. She had significant outbursts during her periods, including behaviors like head-banging. But when she calmed down, she still did as much as she could. She worked in a scrap-sorting shop, where she operated a can-compacting machine.
The work was easy, but it was really good to see that people with autism as severe as hers could still create value.
This gave me hope for my own child. It is my dream for him to live a dignified life in a similar facility, doing what he can.
Giving our children a “forever home”
In October of 2017, our family visited Xiaoman’s dad’s hometown in Jinzhai county, Anhui province. We found that this once-impoverished countryside had changed significantly: There were highways and high-speed rail with direct connections to Hefei, Wuhan, Shanghai, and Nanjing. The environment had also been well-protected—it was now known as “East China’s last old-growth forest.” The vegetation was lush, a field of green as far as the eye could see.
We stayed for eight or nine days. Xiaoman was quite carefree during that time. There was a decrease in his more common stereotypic behaviors, including making “ah” sounds, repetitive hand movements, and jumping and screaming during meltdowns. He was calm, observant of his surroundings, and started sleeping better. I decided to bring him back there to live for a while.
I rented a vacant elementary school on the edge of the old county seat. During the renovations, several families with autistic children came to Jinzhai on vacation. The parents felt that not only was this a suitable place for their children to live, but also a particularly suitable one for them to grow old in. With this opportunity, we decided to build our children the “forever home” we dreamed of in Jinzhai.
We called this home the “Jinzhai Star Town,” which will be a community funded, built, and operated by the families of autistic adults. We are planning for our children to be able to live, work, and retire here. With a professional care team, the parents can leave their children here with peace of mind, or choose to live in a “parents’ apartment” to be close to their children.
Prior to this, none of us had found any place like this in China, nor could we wait for one to be set up. If I waited another 10 or 20 years, I’d be in my 70s or 80s, and I would no longer be able to take on this kind of project. Rather than resigning ourselves to 20 years of anxiety, waiting for others to take up the task, we could do it ourselves. This is one way for us to alleviate our fears.
Star Town is operated like a corporation, with parents entering the community as shareholders. Each household must be able to prove at least 5 million RMB in assets before investing. The children of shareholders have permanent residency and receive lifelong care.
The town has already obtained land from the government, and is currently under construction. We expect that it will be ready for occupancy by the beginning of next year. During construction, the refurbished primary school has become our experimental base of operations, Star Home.
Since 2017, the children of 18 shareholder families have already moved into Star Home, where they are getting used to group living with the guidance of several counselors. Following a set schedule, they practice life skills, engage in outdoor activities, learn to chop vegetables and bake, and explore their own interests.
We’ve started preparing our children early because we hope they’ll be able to build good relationships with their teachers and companions. If someday their parents can no longer care for them, if they leave this earth, these autistic adults will have a built-in support system and will still be able to live a good life. This is our aim.
Currently, charities like Stars and Rain and Little Star Town are actively working to address the issue of elder care for autistic adults. We hope to bring attention to their work so that more people will come to understand autistic people and work toward a safe, equal, and dignified future for them.