Ac­cept­ing dif­fer­ence

Chi­nese autis­tic chil­dren lack in­sti­tu­tional help, ed­u­ca­tional op­por­tu­ni­ties

Global Times – Metro Shanghai - - FRONT PAGE - Page Ed­i­tor: yangzhenqi@ glob­al­

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.

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 high­func­tion­ing 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 per­va­sivede­vel­op­men­tal and childho 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 im­pared 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 dis­a­pointed by their lack of re­sponse but they may have an­swered by 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.

Photo: Cour­tesy of Shang­hai Chil­dren’s Art Theatre

An autis­tic child takes part in the Pa­per Planet show.

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

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