Parents help autistic kids adapt
Parents of people with autism are working with NGOs and the government to enable their children to adapt to life without guardians in China. Xing Wen reports.
The drums pounded steadily as the curtain lifted on a variety show staged by young people with autism on World Autism Awareness Day, which fell on April 2.
Fan Meiying was helping her 16-year-old son, who’s a head taller than her, put on his costume and shoes backstage at a students activity center, at the Capital Normal University.
The 43-year-old spoke softly and patiently to the boy, who was diagnosed with autism spectrum disorder in 2004.
“I initially didn’t want to send him to special education because I believed he would overcome his disorder and be able to stay in primary school with children who don’t have autism,” she says.
She quit her job as an accountant to sit in the back of her son’s classroom.
It’s common that families lose a breadwinner as one of the parents gives up working to care for children with autism.
Fan’s son started throwing more explosive tantrums upon reaching puberty. So, the family sent him to a specialneeds school with courses for children with autism who are younger than age 16 in 2014.
“He’s too old to stay at the school now,” she says.
“I hope he can someday earn his own living.”
Her concerns are shared by many such parents.
Yang Zhonghao’s parents sent him to a calligraphytraining agency in 2007 to help the 23-year-old alleviate the anxiety that comes with his disorder.
He became less irritable, and started winning regional and national prizes for his works.
“He often had epileptic seizures after age 18,” recalls his mother, Qi Zhiying.
“He’s an adult. But it’s difficult for him to be independent, to have a job and to adjust to new environments.”
She worries he may be injured without his family’s protection.
She believes his ideal job would be to run a calligraphy studio in his home in the Inner Mongolia autonomous region’s Ordos.
Such NGOs as the red-brick Autistic or Autistic Art studio in Beijing’s 798 are also working to assist the children and alleviate parents’ concerns.
Income sources
Brightly colored paintings by artistically talented children and adults with autism from around the country line the walls of the lobby. Bags, bottles and phone cases printed with the paintings line a shelf.
“We help them sell the paintings and make creative products using their works,” studio co-founder Zhou Jing says.
“A big part of the money goes directly to them.”
The studio also offers free painting, music and handicraft lessons to people with autism.
It’s affiliated with the Beijing Association of Rehabilitation for Children with Autism, an NGO comprised of experts from the Peking University Sixth Hospital and parents of children with autism.
Zhou joined after her son, Duo Duo, was diagnosed in 1998.
She met Li Mu, a Tsinghua University Academy of Arts and Design professor and the father of a child with autism, through the group.
Li’s son would scribble with a brush whenever his father painted on a canvas.
He realized children with autism could communicate through art in ways they couldn’t otherwise.
They’re sometimes nonverbal and live in their own worlds. But they can paint whatever they want without even considering the benefits, he realized.
“This may provide insight into art’s essence,” Li believes.
“Society should give them more opportunities to be understood.”
Li and Zhou founded an annual art exhibition with the association to display works by people with autism in 2008 to promote awareness.
Zhou says greater publicity would help them sell artworks and related products.
“We then could have enough money to cover expenses and reward the painters,” she says.
Sheltered employment
A bakery on the studio’s second floor teaches adults with autism how to make pastries for free.
Zhou says they plan to turn the bakery into a sheltered workshop that not only ensures incomes for people with autism but also protects them from the outside world.
“They’re like people who never grow up and don’t know social conventions,” Zhou says.
“They feel safe in their comfort zones and adhere to strict routines. That’s why we want to shelter them.”
The bakers went to Beijing’s Grand Summit to sell cookies and products printed with paintings every week, with assistance from full-time teachers and volunteers.
“We encourage them to work within their capabilities, enabling them to earn money in a respectable way,” says Guo Ying, a full-time teacher in the studio.
“They can also learn how to interact with others in society by talking with customers.”
People with autism need lifelong care and protection, Zhou says.
“I hope the government can develop solutions to guarantee their wellbeing without us guardians.”
The group plans to make the bakery a model and figure out how much it costs to run.
“The government will notice and know how to help us.”
He’s an adult. But it’s difficult for him to be independent, to have a job and to adjust to new environments.”
Qi Zhiying,
Job option
Though sheltered employment is a good option for families who want their children to be protected in workplaces, some parents hope their children can function in ordinary workplaces and explore their potential to engage the outside world.
China’s government and NGOs practice supported employment, which gives people with disabilities employment opportunities to work with peers who don’t have disabilities through vocational rehabilitation and job coaching.
The country plans to cultivate 2,500 job coaches for supported employment by 2020, according to China’s 13th FiveYear Plan (2016-20).
The NGO Rong Ai Rong Le has been developing supported employment since 2013.
The organization first assesses candidates’ emotional stability and communication ability to see if they’re suitable, project manager Qu Zhuo explains.
“About a third of people with autism are appropriate for the program,” Qu says.
“Coaches give one-on-one instruction in vocational skills, social propriety and selfcare.”
Coaches then follow them on the job for months to make sure they can handle the work.
“The whole process averages a year,” Qu says.
“So far, 37 trainees with disabilities have signed contracts with companies.”
The Beijing-based NGO founded by parents of children with intellectual and development disabilities is a pioneer of supported employment in China.
“We’re striving to give these vulnerable groups a fair chance in the workplace,” Qu says.