Author: Yutong Tang&Yuehan Li
As the nurse gently shut the door, with her son’s autism report in hand, Xiaohua froze. Pale light in the quiescent hall shines upon her, sitting still, staring at the spotless floor with dim eyes. She saw her reflection shivering, but a woman like her never shivers. She did not shiver when she chose to walk out of that rural village and pursued a career as a cartoonist; neither did she shiver when she started a new animation company with all the unknowns lying ahead of her. “Then neither should I shiver when confronting the heartrending news,” recalled Xiaohua. With a deep breath, she got back on her feet and started her journey as a pioneer in the autism community.
It wasn’t an unexpected result though. Clues lie far ahead of time: the abrupt yells, some sudden baffling soliloquies, and her son’s expulsion from school. Xiaohua clearly saw the differences between her son and his kindergarten classmates. But even though she found her boy's behavior peculiar, she had no idea what had occurred. Eight years ago, autism was still a word unheard of for most Chinese civilians. When Xiaohua took her son Qian for a diagnostic test, it was also the first time she heard the word autism, and just like what she envisioned, this word led her on a completely different path.
Finding the right path for children with autism never seemed easy. Parents of children with autism groped in the misty forest, where voracious charlatans hid in the shadows, waiting for prey to fall into traps. Rays of light gleamed on the parents, but no one knew whether the lights were illusions or illuminations. While actual illuminating help was difficult to obtain, Illusions from phony’s tales were everywhere. Frauds have always existed and become more and more prevalent as time passes. Flaunting their folk prescriptions—needles, electric shocks, or, more ridiculous, telepathies, the charlatans made everything appear capable of curing autism. And of course, the cure was costly, ranging from thousands to millions, and sometimes at the cost of one’s life. The frauds, particularly, aimed at these hopeless parents desperately searching for the light. However, out of the parents' expectations, the results were never as satisfactory as the promises. On the other hand, in 2014, the social resources available for the autism community were hard to find, and the government stayed uninformed of this community.
Ignorance and lawlessness had led to a dark age that devoured countless cornered families, but it was in such a dark age, that Xiaohua found the true light on her own and passed out torches of hope to other helpless families.
After several trials, Xiaohua encountered her guide Helen, a social worker in an American autism organization in 2014. Despite the language barriers, Xiaohua successfully obtained first-hand information from Helen. With the help of her friends and her own unrivaled desire to find help, Xiaohua managed to read the international autism parental guides from Helen. It was then that she realized the bitter fact that autism cannot be cured and is far more complex than she once thought. Once again, Xiaohua held back the whirlpool of emotions that clouded her head. Her innate bravery, calmness, and the light of reason shielded her from illusions and subsequently made her an influential leadership figure.
Xiaohua did not stop her inquiry about autism. In 2015, Xiaohua first heard of an autism parent training session held by New Star Language in Beijing. After waiting in line for several months, Xiaohua’s whole family traveled across China and attended the workshop. In our interview, she mentioned that the training changed her entire mindset about autism: “It was then I realized autism was not a big deal. Things will keep on going and there is no need to give up our normal life. I’ll get my son educated just like other kids.” said Xiaohua.
As Xiaohua was learning more about autism, so did Chinese society. Things have changed in a few years, new laws and policies endorsing disabled children’s right to receive schooling have been declared, and more people are learning about autism through public welfare programs and the media. Xiaohua was then able to find an inclusive kindergarten for her son, which allowed her to engage and teach teachers about autism-related tips. By actively engaging in her son’s education, Xiaohua assisted her son to move from kindergarten to elementary school, and now, her son Qian is going to be an incoming freshman at a middle school. However, things can never be perfect. With all the effort she input into her son, she found it hard to balance her work, and eventually, she closed her rising animation company. Still, when being interviewed 8 years after the time when her whole life was altered, Xiaohua says “I have no regret back then because I’ve found a more gracious career that is worth my effort.”
Xiaohua was not the only parent that give up her job for her son’s education. Countless parents altered their careers to accompany their kids on the autism spectrum. Sudden life changes have hit most families offhand. Outside the classroom, parents gather up like flocks of sparrows, chit-chatting about the miserable lives of themselves and others. Everyone knew complaints couldn’t resolve anything, but there was no way for the parents to hold their sorrowful feelings. For a long time, they’ve got no spare time to feel sorry for their children or themselves. The burdens of life have made everyone lose themselves.
Xiaohua also felt sorry, but her heart and innate bravery told her that things should not be like this. For her, this life is the exact opposite of her dream. She missed the days when animation producers blew up her phone. She longed for the time when inspirations arouse her back to the tablet during a long-waited break and she yearned for the accomplishing feelings she felt when her virtual character was printed on posters in every toy market. She missed her life as a leader, creator, and achiever. Being a wholly devoted mother was not enough for her, so she moved onward. Like high school students arranging after-school parties, Xiaohua calls on the parents to dance and take their time on the kindergarten playground with music. At first, it was merely for fun. By tipping her toes on the empty playground surrounded by yellow seesaws and rosy red slides, Xiaohua frees herself from the burden. She felt like a butterfly, flapping her beautiful wing through the flowers and showing off her elegance and pulchritude. Other parents were intrigued, they dismissed their petty taunts and turned themselves into happy little girls, dancing in the convivial atmosphere. This humble initiative made by Xiaohua subsequently turned into dance shows and bonuses from dance competitions, which largely alleviated their economic burden. They named their 9-person dance team the wings of angles, the carefree feeling that freed them from the burden of life.
Xiaohua also found this program a great opportunity to preach autism to ordinary people and bring parents like her together. When the dance team stands on the podium and introduces themselves, they call themselves rainbow launchers. As parents of children on the autism spectrum, they promote differences between children and speak out for their children's right to be part of the rainbow. They appeal to the public not for sympathy, but for equality. They told people that the greatest thing they would appreciate was not compassion, but equal treatment. People were stunned by the tenacity and energy of this special dance team, followed by generous donations and volunteers who intend to take care of the children on special occasions. “I remember clearly that many times, there were warm-hearted people directly slipping money to my hands after our speech, saying that they don’t know what they can do but they really want me to accept their donation,” recalls Xiaohua.
Xiaohua, moreover, was recognized by the local authorities for her work with autistic children. In 2016, she was sent to a well-known organization in Guangzhou to find further help for the parent community in her hometown. She launched her own non-profit organization for parents there, got financial support from funds provided by large firms, and started free afterschool activities like sports and arts for children with autism. Right now, her organization has grown from a 9-person dance team to an organization with 400 families across the province. Unlike other welfare organizations, Xiaohua’s team only focuses on autism. Xiaohua wants to differentiate her team from large organizations that intend to participate in all aspects of social welfare. “The larger the organization, the larger the administrative level, and the harder it is for people to do real things for those in need,” says Xiaohua
After 8 whole years of constant effort, Xiaohua has altered her life and that of countless others. When asked about bitter memories she remembered most clearly, she replied with no hesitation. “The stereotype and misunderstanding of autism”. Just like other children with autism, her son was often called retard and simpleton, and some of his classmates’ parents even believed that playing with him can cause their children to become retards as well. Despite the trauma in Xiaohua’s heart, she knows stereotypes can be altered by the popularization of science. She also says frankly that her career is far from complete. In many provinces of China, there are workshops that provide jobs for the disabled, but they do not accept autism sufferers. Now her son is about to become an adult, his marriage and livelihood bother Xiaohua a lot.
Just like her name, which means flower in the dawn, Xiaohua will always lead people out of the darkness and bloom in the light. This is just the beginning of Xiaohua’s tale. She will continue to bloom as a leader, creator, achiever, and supporter of her son. Despite her achievements, Xiaohua aims for more. She continues to sparkle like a bright red star in the misty forest, guiding families in need to a harbor of sanctuary where they can receive help, take their time and prepare for the rest of their life.