Lost in their inner worlds

By Qi Xijia Source:Global Times Published: 2017/2/28 18:28:39

Chinese autistic children lack institutional help, educational opportunities

Shanghai Children's Art Theatre welcomed 21 special children and their parents to take part in their most recent show, Paper Planet. Together they entered a cavern of towering cardboard trees where they encountered creatures, inhabitants and foliage all constructed out of paper. The inner world of the handmade installation served as a fragile yet vibrant metaphor for the minds of the autistic children in attendance.

An autistic child takes part in the Paper Planet show. Photo: Courtesy of Shanghai Children's Art Theatre

The mother of a 5-year-old autistic boy, surnamed Zhou, who attended the Paper Planet show told the Global Times that she first grew concerned about her son after he was enrolled in kindergarten.

"He would run away while playing among a group of children. When we called his name it took him a long time to respond. When we played hide-and-seek he had no interest to look for us. He was just lost in his own world," Zhou said.

His teacher also noticed a difference about the boy and suggested Zhou take him in for examination.

After her son was diagnosed with ASD (autism spectrum disorders), a neurodevelopmental condition of which there is no cure, Zhou and her husband became sleepless with worry over their son's future.

"How will he live his life when we are gone? We feel like we need to prepare for his unforeseeable future while he is still in our hands," said Zhou.

The family wasted no time looking for local autism institutions, only to find that there are long waits at almost every place they visited.

After two years on a wait list, Zhou finally had her son enrolled at Shanghai Qing Cong Quan Training Center for Children with Special Needs.

"In the past I never thought about autism nor autistic children. Only when it falls on you do you realize there are so many," said Zhou.

(From top) Autistic children and their parents participate in the Paper Planet show. Photos: Qi Xijia/GT and courtesy of Shanghai Children's Art Theatre

Golden treatment time

Founded in 2004, Qing Cong Quan is a nonprofit organization providing professional rehabilitation, training and coaching to autistic children from age 2 to 6 (the widely acknowledged "golden treatment time" for autism is under 6 years old).

Once enrolled, children are divided into different classes according to their personal evaluations.

Since Zhou's son has no intellectual impairment and still attends kindergarten every morning, he was placed in a half-day class for high-functioning autistics.

After one year at Qing Cong Quan, Zhou found her son was much better at following instructions. "He now knows to do the right thing at the right time," Zhou said.

But now that the boy is 5 and a half years old, Zhou is already concerned about what awaits him after he must leave Qing Cong Quan at age 7.

Zhou hopes he will lead an "independent and respectable" life, starting with being accepted into an ordinary primary school.

The parent believes that it will be easier to enroll her son in a public school than a kindergarten due to China's nine-year compulsory education policy.

However, students suffering from ASD are often required to postpone their attendance in primary school by one year and are also often vulnerable to dismissal by school administrators if they disrupt or disturb other students.

Zhou nonetheless remains optimistic and positive about his chances.

Integrated education

"Less than 20 percent of children in Qing Cong Quan have the chance to go to normal schools; the rest attend special schools for mentally retarded children," Zhang Yinghui, the deputy headmaster of Qing Cong Quan, Jiading branch, told the Global Times.

Zhang said that this rate is lower than in Europe or the US, where ASD children have the chance to study with "normal kids" in the same school under integrated education policies.

Though separated at first, autistic children can eventually switch to standard classes once their condition improves.

Another problem facing Chinese autistic children is the lack of institutional or professional help compared with the proportion of those diagnosed with autism, Asperger syndrome or other pervasive developmental and childhood disintegrative disorders.

Though Qing Cong Quan has 40 certified teachers with psychology and special education backgrounds, it is still shorthanded. With 400 families on its waiting list, Zhang expects them to have to wait for at least one and a half years.

"We are very worried about the kids who may miss their golden treatment time," Zhang said.

Nuanced and rich

Worse than the lack of treatment is discrimination from society, with many people in China simply tagging autistics as "eccentrics."

Zhang said impaired social interaction remains a core problem for autistic children, as they lack the same oral expression abilities as non-impaired children.

"You may be annoyed by their behavior, but what's happening is they have too much backlogging in their mind that can't be turned into words. Sometimes you may be disappointed by their lack of response, but they may have answered your question one hundred times in mind. You just don't know that," Zhang explained.

To understand the "nuanced" inner worlds of special-needs children requires compassion and patience. Zhang hopes that people can accept their difference instead of seeing them as "different."

As for their future in society, citing Naoki Higashida, a Japanese novelist and poet, Zhang would like to see more autistic children admitted into public schools and also given more job opportunities after graduation.

Naoki Higashida was diagnosed with autism at the age of 5 and not able to make himself understood to people around him.

Despite his disability, he wrote and published a book, The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism, which became a Japanese bestseller.

His story has inspired and empowered many Asian parents and teachers, including Zhou and Zhang, to explore the rich inner worlds of autistic children.

"They can feel what we can't feel," said Zhang.


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