Youth Shine Academy – Bringing autism in bali to light

Explore Bali | Written By, NOW! BALI | April 29th, 2013

Perhaps, the most discouraging fact about Autism in Bali is the misconstrued treatment received by patients from society. Treating autism in Bali is a lonely struggle as witnessed by the Youth Shine Academy.

 

Perhaps, the most discouraging fact about Autism in Bali is the misconstrued treatment received by patients from society. Treating autism in Bali is a lonely struggle as witnessed by the Youth Shine Academy.

How did Youth Shine Academy come about?

Youth Shine Academy (YSA) was founded on January 23, in Denpasar, Bali by Teguh Jaya Putra. Bali has the 3rd largest population of people with autism in the country with 20,000 patients and 500 babies born with autism annually. Back then Pak Teguh started the foundation with IDR 100,000 and an old bicycle, which he rode to make door-to-door visits to autistic children, from Denpasar to Jimbaran, 12 hours a day, everyday, from Monday to Saturday. Currently YSA has 6 branches in Bali and 2 in Surabaya with 35 staff holding undergraduate degrees from various majors.

 

What are the main challenges of providing care and treatment for children with autism in Bali?

First is society and parents’ lack of knowledge in regards of autism. Many would see children with autism as retarded or suffering from a black magic attack. Consequentially, instead of taking them to an autism centre, parents subject their autistic children to religious rituals, which often are costly and, at the end of the day, ineffective. There are more than a few parents who think that their children are deranged, so they put them in bondage and confinement. Some parents from higher caste are ashamed to have children with autism, so much so that they keep the children from the outside world without proper care.

The second challenge is dealing with the government who are indifferent about the fate of children with autism. The government would only encourage these children to attend class C school for children with special needs (SLB C), which doesn’t actually fit their condition. Meanwhile the government also fails to prepare teachers in general school to handle children with autism, which eventually keeps them from being admitted to such schools. When we come to the education and health office to ask for permission to give free counseling on autism in general schools, we are subjected to a lot of bureaucratic nonsense and charged hundreds of thousands of rupiah to get the permit issued. Ironically, the social and health offices have never done counseling on autistic disorders for schools, traditional community units (banjar), or village integrated health services units (Posyandu).

Lastly is the issue regarding availability of trainers/ able human resources to teach children with autism, as there is no undergraduate programme on autism in Indonesia. Meanwhile undergraduate programmes on education, psychology, and special needs education never discuss autism specifically. Pak Teguh received training on autism abroad so he’s the one training the teaching staff at YSA. The staff at YSA have various backgrounds so they must be trained from scratch in providing care for children with autism.

 

What is the general condition of children/ students with autism in Bali, and what do they need to live a fulfilled life?

There are two types of autism, infantile (autism since birth) and regressive (regressed development). 80% of autism in Bali is of the latter variant with a 4:1 ratio between male and female patients. For 10 years, Denpasar was the only place to have an autism care centre. Therefore, YSA has initiated the establishment of more centres in Denpasar, Singaraja, Gianyar, Tabanan, Klungkung, and Jimbaran. Only Bangli, Karangasem, and Negara haven’t got such a facility. 60-70% of children with autism require life-time care and only 20% can become independent in the future. Basically to achieve maximum results, children with autism must receive intensive care and treatment from as early as 2 to 3 years old, 40-hours a week, uninterrupted for at least 2 to 4 years.

Children with autism don’t want everyone to feel sorry for them. They only need to be given a chance; a chance to have treatments that fit their needs, a chance to attend general school, a chance to socialize, and even to engage in activities like any other children. There are many children with autism who could have done better in life but were discouraged, just as Albert Einstein and Thomas A. Edison were thrown out of school because they were deemed to have no ability. Of course, we all know that if it wasn’t for them we would all still live in the dark and wouldn’t have been able to place satellites in outer space that would connect the internet, telephone, and other modern devices.

 

What is the general view on autism? Are there misconceptions regarding autism that need to be addressed?

Society in general still see children with autism as retarded, deranged, untreatable or incapable of getting anything done, and more, although the likes of Einstein, Edison, Isaac Newton, Bill Gates, BJ Habibie, and many other important figures are former autistic patients. Autism is different than schizophrenia, Down syndrome, or mental retardation. Autism is a development disorder that affects behavior, the ability to communicate and the ability to socialize. Everything else, other than those factors, is normal. Therefore, autism is very treatable.

Many physicians also don’t understand autism completely so they tend to prescribe sedatives such as haloperidol, Rispedal, Ritali and others, which are actually for patients with mental disorders. Many children with autism suffer liver and kidney damage because they have been subjected to the wrong medication for years since they were little. One of our former students passed away at the age of 12 because of complications. Autism is a development disorder, not a disease, so what is required is proper treatment to encourage development.

 

What is the method used by YSA in treating children with autism?

YSA has devised its own method called SHINE (Systematized Holistic Intervention and Natural Education) that focuses on 5 development areas of a child; physical, cognitive, adaptive, social, emotional, and communication. The YSA brand and method was listed in HAKI last year and can be used to provide care and treatment to children with autism all over Indonesia. YSA don‘t train children with autism to pursue master or doctoral degrees; we teach them useful life skills and self-help skills, which are useful to provide for themselves in the future.

Initially we conduct observations on their development according to WHO standard. Next we provide 1-on-1 care in personal homeschooling that targets 500 basic skills for the student to master. After a student is ready, he or she is integrated into community homeschooling that is equal to elementary, junior high, and high school levels according to their individual abilities.

During the last 10 years YSA has had a number of its students graduate and get a job, and use their income to pay for the education at YSA. There are some who got admitted to colleges in Jakarta and Gadjah Mada University in Yogyakarta. There are some others who have received awards in singing contests, fashion shows, and piano recitals. A 10 year old student who is skilled in painting even had his work bought by a collector for IDR 7,000,000. Some of the students with cerebral palsy have been able to stand and walk, some others managed to attend general school on their own. The list of achievements enjoyed by our students is growing.

 

How can the general public support your programmes?

YSA haven’t received any assistance from the government nor donors. So far we fund our operations ourselves. Financial assistance from well-to-do students’ parents is used to subsidize the less fortunate students. We still need support to help more children with autism in other regencies. We would also ask the community to report cases of children with autism in their community to us so we can follow it up. We provide 24 hour free consultations by phone and face-to-face. We also provide free trial treatment for a month for parents who are not sure if their children can be treated or not. 

 

We give individuals with autism room and opportunity in the family, school, society, and workplace. We don’t put them down just because they are different than us because they are also God’s precious creatures. 

Youth Shine Academy

Jl. Tukad Batu Agung No. 4

Panjer, Denpasar, Bali

T: 0361 7409436, 2112219

www.youthshineacademy.blogspot.com

 

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