Autism grows into silent epidemic
in China By Nick Compton
BEIJING - It's just past 10am, and at the
Beijing Stars and Rain Group Home in a bleak
eastern suburb of the capital, 17-year-old Zhu Yao
is unsettled about cookies.
He's pacing
nervously and clenching his fists because at this
time every day, without fail, he begins the long,
surprisingly complex task of baking cookies. He
cracks the eggs, prepares the dry ingredients,
blends the mix, and rolls the dough flat before
stamping out miniature heart-shaped sweets baked
in a
convection oven and sold for
15 yuan (US$2.40) per dozen. Today, though, the
process is halted because there are no eggs.
"Zhu Yao, relax," Lafayette, a volunteer
working at Zhu Yao's group home says. "We'll start
in a second, as soon as we can."
Zhu Yao's
rigid inflexibility, his absolute insistence that
life be predictable and routine, is a symptom of
his disorder - autism. At his group home, a
converted three-story villa in Beijing's Tongzhou
district, Zhu Yao and five other
moderate-to-severely autistic kids between the
ages of 12 and17 receive treatment five days a
week from 9am to 5pm.
When Beijing Stars
and Rain Group Home was founded in 2006, the need
for such a facility was evident to anyone who
looked. It has become a widely accepted fact among
healthcare professionals that the prevalence of
autism is rising quickly across the world. The
trend didn't skip China, where it is now estimated
by the World Health Organization that 1.1 million
individuals suffer from autism, making it the
country's most common mental disorder, according
to official statistics.
While
early-intervention facilities aiming to educate
young children with autism have popped up in
China's developed areas, facilities providing
meaningful life skills for older children who
graduate from China's nine-year compulsory
schooling system are painfully few.
"The
incidence of autism in the past 10 years in China
is undoubtedly increasing," Dr Guo Yanqing, a
child psychiatrist at Peking University No 6
hospital and a pioneer in treating children with
autism in China, said. "It's difficult to know
whether it's because more and more people are
aware of the behavioral phenomenon of people with
autism, or because the actual occurrence is
increasing, but it's a trend."
Beijing
Stars and Rain, now one of the most celebrated
autism rehabilitation facilities in China, began
in 1993 as the country's first non-governmental
organization (NGO) targeting the disorder. Tian
Huiping founded the institution out of necessity.
A native of Sichuan province, Tian was
disheartened when her two-year-old son, Yang Tao,
was diagnosed with autism. Her home near Chongqing
lacked any practical treatment facilities at that
time, so in 1992 she made the 1,500 kilometer
journey to Beijing, where she thought the
situation would surely be better. It wasn't.
The public school system in Beijing was
over capacitated and underfunded. Special needs
kids were relegated to homeschooling or obsolete
local schools catering to the physically disabled.
No private, specialized educational institutes
existed. In response, Tian rallied investors -
mostly parents of autistic kids like herself - and
founded her own center, aimed at improving the
lives of children with autism by training their
caretakers and parents in Western, science-based
treatment methods and offering their three to
six-year-old children one-on-one instruction with
experienced teachers.
"We were founded to
tell Chinese society and parents the truth about
what autism is and how to accept a child with
special needs," Sun Zhongkai, Stars and Rain's
communication director, says. "A lot of parents
feel ashamed. They think 'I' did some bad things
in a past life, so 'I' deserve this."
The
early-childhood center offers four, 11-week
training sessions per year, at a cost of 6,500
yuan per session. Fifty families from all walks of
life and from all corners of China escort their
children. Many kids are led there by unaccompanied
mothers, in Beijing for the first time, while
their husbands stay in their home provinces to
deal with affairs and earn money. They stay in
bare-bones apartments they rent from the village's
locals for about 700 yuan per month, and group
together according to their home towns - speaking
faraway dialects and reminiscing about their local
cuisines.
Nearing its 20th anniversary,
the childhood center has gained a celebrity status
of sorts, with a waiting list at least 50 deep and
one year long. In 2007, an English-language
documentary shot about the school made splashes in
international film festivals. In 2010, a Chinese
film studio scored a box office success with a
movie starring Jet Li based roughly on Tian
Huiping and son Yang Tao's life. Its treatments
have been covered by CNN, CCTV and a horde of
other domestic media.
"Everyone was
impressed by Stars and Rain when it was founded,"
Dr Tad Pu, child psychiatrist and founder of
Rainbow Consulting, another Beijing-based autism
rehabilitation center said. "It was the first to
do it."
Expanding opportunities - at a
cost In the years since Stars and Rain's
childhood center was founded in 1993, a handful of
private autism treatment facilities have sprung
up. In addition to Rainbow Consulting, which
opened its doors in 2009, at least three other
centers have opened, in addition to at least
half-a-dozen more catering to international
students.
Among them is Wucailu, which,
founded in 2003, has become China's largest
autism-specific education center, with around 250
kids, all Chinese nationals, enrolled in three
campuses in Beijing. For 4,800 yuan per month,
students there aged between three and six receive
one-on-one teaching in addition to music and art
therapy, group learning, and life skills on clean,
well-lit campuses with chandeliered hallways and
sun-filled classrooms.
"We opened because
the market needs it." Fu Xueyin, the vice
principal of Wucailu said. "For newly diagnosed,
there's no time to wait."
Despite the
proliferation of such schools, there remain thorny
barriers. Even with the local governments of
first-tier cities in China now giving subsidies of
up to 2,500 yuan per month to families of children
with autism, the costs of private institutions
remain out of reach for many - assuming they can
get their foot in the door in the first place.
"The waiting list for private centers and
international schools is intense," Dr Pu of
Rainbow Consulting said. "You get in through
connections, priorities, relatives and friends of
the people who run the place. In the end, it's
often a case of do you know the principal."
In second and third-tier cities in China's
hinterlands, the situation is far worse, Sun
Zhongkai said. "Most kids need to stay at home,
they can't come to public school. Big cities now
have autism schools, but in the small cities and
rural areas, nothing. They don't know what autism
is."
At Stars and Rain, a session's cost
of 6,500 yuan is roughly equal to a month's salary
in Beijing but could amount to a year's savings
for a rural family.
"At the center, out of
50, 10% are very poor. Some sell everything to
come. One family ate nothing but noodles the
entire time they were there." Sun said.
Compounding the financial burden is the
near-paralyzing social stigma that many Chinese
parents face while raising a disabled child. "Now
with the one-child policy, there's so much
pressure for your child to be perfect. Any
disability is looked upon with shame," Sun said.
For parents who do seek help through
China's education system, which ostensibly
protects the rights of special-needs children to
attend public institutions for nine years of
compulsory education, usually from six to 15-years
old, the path is all-too-often a dead-end.
"There is a serious lack of trained
special education teachers. In schools like
Beijing Normal, which have a special education
program, few decide to teach in the area," Dr Pu
said, adding that in a year he hoped to recruit
teachers from the university he could find zero
willing to teach autistic children.
At
Beijing Normal, one of China's top teaching
colleges, only about 20 graduates each year major
in special education, Hu Xiaoyi, associate
professor of special education there, said. The
lack of interest is due in part, she said, to the
low prestige attached to a job that often requires
hours of hand-holding, redirection, and behavior
analysis techniques that can be maddeningly
repetitive.
"The problem is the incidence
of autism has increased incredibly," Hu Xiaoyi
said. "Most children with autism go to NGOs,
public schools cannot accommodate them. NGOs have
teachers who weren't trained. Our special
education graduates like to go to public schools
for the salary and the status. The NGOs want them,
but they don't want to go. It's a real problem."
The problem is evident at the Stars and
Rain Group Home, from where Zhu Yao will soon
graduate.
The group home Li
Shuai, Zhu Yao's 24-year-old teacher, studied
psychology in Shandong province and came to
Beijing in 2009 to work for the group home on the
recommendation of a college friend who had
volunteered there. Warm-hearted and baby-faced,
with an electric smile that cracks open any time
he's around his students, Li Shuai's passion for
his work shows. Still, he never took teaching
courses and leapt into his work three years ago
unpracticed and overwhelmed.
"I just tried
my best to read the research and know the
situation," Li Shuai says in careful English.
"It's not easy, never. But I just try."
At
the group home, the students' days are regimented
into discreet chunks, each with a specific task to
complete, a specific goal to reach. It's an
orderly, well-defined environment that allows the
students to thrive.
In the morning,
students have a group circle-up for speaking and
listening skills. Then they go to individual
lessons, physical therapy, and a sort of
arts-and-crafts class where the more advanced make
bracelets or cookies, and the lower functioning
work on simple art projects. They eat a group
lunch, practicing table manners and feeding
skills, and in the afternoon work on life skills
like teeth brushing, hand washing, dressing, and
sweeping and mopping.
At 5pm, assistants
with a non-profit home for the disabled come to
walk the children to their overnight home, a
10-minute walk from the Stars and Rain villa. This
routine repeats itself, without fail, or as close
to it as possible, Monday-to-Friday, until the
kids' families come to pick them up on Friday
afternoon for a weekend at home.
"Of
course we want to make these kids as independent
as possible," Li Shuai says, "Because when they
leave here, they may have nothing."
Poor prospects The problem is
too big for society to ignore. With the first
official diagnosis of autism in China issued in
Beijing in 1984, the earliest cohort of autistic
individuals, numbering in the hundreds of
thousands, are reaching adult-aged and the
opportunities available to them are by all
accounts dismal.
"Very, very few find some
jobs, and if they do, they have the job because of
their parents, because their parents run a company
and provide a position for the child to do some
simple thing," Dr Guo Yanqing at Peking University
Hospital No 6 said. He said he knows of few NGOs
catering to such individuals, and the social
safety net, as it exists in many Western
countries, is in its nascent stages here.
"You'd have a hard time finding a single
autistic individual finding a job in China's
society," Dr Tad Pu said. "Companies don't want to
be responsible for the supervision, the oversight
of that individual."
Very soon, Zhu Yao
will face this challenge head-on. The tall,
handsome son of a mid-level government official,
Zhu Yao was diagnosed with autism when he was four
years old and has been at the group home since it
opened, six years ago. He's self-reliant, but
prone to jarring verbal outbursts and awkward
facial contortions when he's over-stimulated, as
he often is. He's obsessed with cleanliness,
refusing to shake hands during the morning circle
with any student he suspects might harbor a colony
of germs, and insists on mopping the living room
floor each afternoon.
He loves to bake
cinnamon-raison cookies that the home sells to
families at the childcare center, and would
happily spend hours using a pair of scissors to
snip out intricate paper shapes. He listens to his
teachers, tries his best to obey the rules, and
genuinely enjoys himself at the center.
When Chang Le, a severely autistic student
who slowly walks around the center in a constant
daze, wanders off or gets his hands on something
not intended for him (such as cookies), it's Zhu
Yao who most commonly redirects him.
But
no one stays at Stars and Rain forever. The
government cuts off funding for 18-year-olds, and
Zhu Yao will soon be leaving the group home
setting, with his 18th birthday having passed in
late November. After moving out, he will almost
certainly live full-time at his current evening
home, a facility that houses about 20 patients,
most of them severely mentally retarded.
The prospect of him wasting away at a
non-profit home for the mentally disabled,
mindlessly cutting paper or staring at the
television, is almost more than Li Shuai can bear.
"I just wish he would be able to find a
job," he says. "He's good at making cookies. Maybe
a bakery would hire him."
On this day,
when the eggs finally arrive, Zhu Yao is back into
his element, mixing and folding and rolling the
cookies that he's come to see as an essential,
inseparable part of his day. The fact that this
routine and the other iron-clad rituals he's
developed at this group home over six years will
be wiped clean when he leaves in a few weeks
doesn't faze him.
It is Li Shuai who seems
to bear the burden of his fate, watching him,
smiling. "He's my favorite," he says softly. "I
just don't know what we'll do without him."
Nick Compton is an American
journalist completing post-graduate studies at
Tsinghua University in Beijing.
(Copyright 2012 Asia Times Online
(Holdings) Ltd. All rights reserved. Please
contact us about sales, syndication and
republishing.)
Head
Office: Unit B, 16/F, Li Dong Building, No. 9 Li Yuen Street East,
Central, Hong Kong Thailand Bureau:
11/13 Petchkasem Road, Hua Hin, Prachuab Kirikhan, Thailand 77110
