A disability comes into the spotlight

The recently released movie “Running Boy (Marathon),” about the trials and triumphs of an autistic person training to compete in a marathon, has revived interest in the problems of the disabled.
A mere three weeks after its release, the movie has drawn more than 3.2 million viewers.
Currently, about 7,600 autistic persons in South Korea are registered with the Health and Welfare Ministry, with 6,270 of them being males. But experts say the actual number of people suffering from the disability ranges from 30,000 to 40,000. If one were to include those with relatively mild symptoms, the number could exceed 100,000.
Many families with autistic offspring do not register with the government because of the social stigma that comes from being labeled “autistic,” while some do not know they need to register in order to receive any welfare benefits.
It was only in 2000 that people with autism were formally categorized as “disabled,” allowing them to receive welfare support; hence, prior to that time there are no comprehensive data on autistic persons. Although autistic persons receive benefits such as discounts on fuel prices, these are seldom useful because not many of them drive.
Special schools for autistic students or specialized programs in regular schools can be helpful, but the majority of these institutions or programs are in Seoul, with very few in rural areas. The bulk of help for autistic persons comes from their families, especially mothers. That is why the mothers of autistic children tend to become superwomen: They must become a doctor, caretaker and special education teacher all rolled into one.
Son Bin-ho, a 20-year-old autistic man, has been running 10 laps around his local elementary school’s track every day for three years. Beside him is his mother, Lee Hyeon-suk, 50, who accompanies him rain or shine, all year long. Running is part of his therapy, and Bin-ho does so without complaining. Ms. Lee says that it is her fervent hope to die after her son does so that she can continue to take care of him.
Nam Seon-ja, 50, who lives in Wulgae-dong, northern Seoul, says, “My life has been over for a long time.” Her son, Heo Jae-yeong, 25, was diagnosed with autism when he was five, and she has spent every waking moment tending to him. When her son was young, she accompanied him to the welfare center for the disabled in Singil-dong, western Seoul, and when he entered elementary school she sat next to him during class until he reached third grade.
When Mr. Heo enrolled in a special school in Janggi-dong in the fourth grade, she accompanied him on the three-hour round-trip drive to school every day. Ms. Nam says, “My wish is that I die the day after Jae-yeong,” because she worries that if she dies before he does, the harsh reality of his situation will cause her son to live in pain.
The cost of rearing an autistic child is enormous. Because symptoms can improve if early treatment is given, some parents pour their life savings into obtaining proper treatment.
Kim Yeong-ho, the mother of an eight-year-old autistic child, said she spends 1.8 million won ($1,790) per month on psychological and speech therapy, and 1.5 million won on a personal tutor who takes her son climbing and teaches him to swim and do other physical activities. “We spend more than 3. 3 million won per month on our son,” she says, sighing. “We recently sold our apartment in Bundang and moved into a rented one.”
A patent lawyer who lives in Dongjak district says, “Because of the inadequate treatment and educational facilities in Korea, my wife and my autistic daughter, who is 12, recently relocated to Australia.”
While autistic students can enroll in special education schools that enable them to receive proper care, a more serious problem occurs when they graduate. There is not much that autistic adults can do in the real world, particularly if they have not received adequate training. Typically, they either stay at home or become institutionalized.
Low-income families cannot afford any form of treatment, hence their offspring tend to show abnormal behavior because their language or cognitive abilities have not developed. Some parents even abandon their children because they feel helpless.
“Autistic persons must receive regular treatment and education for the rest of their lives but there is no system in place,” said Jeong Seong-sim, a physician at the Seoul City Children’s Hospital in Seocho district. “We must come up with measures, such as allowing the use of health insurance to pay for their treatment and establishing facilities to aid autistic persons.”

Moreover, the prejudice that people have against autistic children is painful for the parents to bear. It is difficult enough, given the economic burden of providing treatment for their children and the insecurity about their future, but the prejudice that people harbor against autistic persons makes parents feel utter despair.
Many people think that autism is hereditary, that it is caused by indifference on the part of parents, that autistic children are violent, or that all autistic persons are mentally retarded. All of these perceptions are untrue.
For some families, having autistic offspring causes great economic hardship. Because of the lack of public facilities to treat autistic children, parents have no choice but to turn to private treatment facilities.
Yong-guk, a nine-year-old autistic child, is driven by his father to the Seoul City Children’s Hospital every day to receive six hours of treatment. The cost per month is 2 million won, and a further 500,000 won is spent on a caretaker. Because of the long list of applicants, Yong-guk had to wait two years in order to receive treatment.
But there is a glimmer of hope, as can be seen in the movie “Running Boy (Marathon).” It depicts the real life struggle of an autistic person, Bae Hyeong-jin, who enters and finishes a marathon race. Mr. Bae, 23, now works in a musical instrument manufacturing company.
Kim Jin-ho, 17, who lives in Busan, recently entered a national sports competition as a swimmer. His mother, Yu Hyeon-gyeong, 45, says, “Since he was a child, he loved swimming and we hope to have him take part in swimming competitions.” Restaurant chains such as Outback have begun employing autistic persons in their branches.
Still, cases where autistic persons find jobs are not commonplace, and that is why parents dearly hope to find group homes or workplaces for their autistic children when they become adults. There is a severe lack of government-led policies to help support these disabled people. Some parents even get together to set up special facilities for autistic children. The Yohan Workplace in Seongdong district, for example, was set up by 10 parents of autistic children to help them find menial jobs to become self-supporting.
Experts say that the government needs to establish more welfare facilities specializing in treatment of autistic persons; set up a “patron” system as in Japan where a person regularly donates funds to an autistic family; increase special education assistance, and develop work for autistic persons.

Some parents seek assistance abroad

Because of a lack of proper care and facilities for autistic children in Korea, many parents choose to live overseas, where there are more advanced forms of treatment and educational opportunities.
“There are numerous difficulties, both mentally and economically,” said a 42-year-old patent lawyer identified only as Mr. Choi. “But considering the hardships that my wife and my daughter had to endure here, I believe it is better that they relocated overseas.”
Mr. Choi’s wife and daughter now live in Australia, having moved there two years ago. “It’s painful to be apart from your loved ones, but seeing my 12-year-old daughter so happy in Australia makes it all worthwhile,” he said.
Mr. Choi’s daughter is enrolled in a special school that provides diverse kinds of sports activities for autistic children. Sports competitions, large and small, are frequently held for the students.
A 44-year-old man identified only as Mr. Kim sent his son and wife to the United States six years ago so that the boy could receive a proper education.
Mr. Kim’s son is enrolled in an ordinary school, but he was assigned four or five teachers who help him with his education throughout the day.
The boy is now 16 and already considering career prospects in various fields.
“In Korea, the parents pour money into special education for their autistic children,” Mr. Kim said, “but what happens when these kids graduate from school is that they have nowhere to go.”
He said his son’s guidance counselors at the school in the United States told him they were looking into such jobs as a musical accompanist in churches because the boy displayed exceptional skill in playing the piano.
Professor Park Ji-yeon of the Special Education Department of Ewha Womans University said, “In the U.S., disabled persons are trained to become self-sufficient by the age of 20, and provided with diverse vocational training and life management skills, whereas our society lacks even the basic sports facilities for them.”

by Shin Sung-shik