Parents' fight to help child with autism

By Agni Amorita

JAKARTA (JP): When their third child was born in good health on Nov. 29, 1992, Dwi Widodo and his wife Tuti were very happy. The baby boy was named Pamungkas and called Amung for short.

But despite his rapid physical development, three-year-old Amung still could not speak. Dwi and Tuti took Amung to the family's pediatrician several times only to be told that they should be patient because the phenomenon was common. The parents, both 32 years old now, believed what the doctor said.

Amung grew up. He liked watching sports programs on TV. His parents were not over-suspicious about his condition but were concerned that he was indifferent to eye contact. They were somewhat relieved that their youngest child could communicate, although through actions and not words.

For example, if Amung wanted to drink milk, the boy would take his mother's hand, and without a word lead his mother to a tin of milk. Even if Tuti asked him whether he was thirsty and wanted to have a glass of milk, the boy remained silent and did not react to his mother's eye contact. But when the mother had prepared the milk, he would immediately take the glass and drink it. So, without them being aware, their son already showed signs of difficulty in socializing.

But not until January 1997 did Dwi and Tuti take Amung to the Harapan Kita Hospital in Jakarta, which has facilities for treating children suffering speech tardiness.

Under Dr. Melly's supervision, Amung was treated for speech therapy at the Cacat Tumbuh Kembang (Development Defects) ward for three months. The diagnosis was that Amung had autism.

Autism is a mental disturbance in the form of active self- withdrawal from the real world into a fantasy world (Toni Sutono MPH and Farida L. Soebardja in Ensiklopedia Nasional Indonesia, 1990).

According to experts in medicine and psychology, a patient suffering from serious autism is usually not able to communicate well and normally with other people.

At the moment, autism remains one of the unsolved mysteries in the medical world, and there has been a sharp increase in its prevalence. It is estimated that autism affects 15 of every 10,000 newborns worldwide, compared to only two in 10,000 births 30 years ago.

In 1997, the number of autistic people in Jakarta was at around 20,000, out of an estimated 400,000 nationwide.

"Dr. Melly even feared that Amung would never be able to speak," said Dwi gloomily.

The diagnosis instantly changed the couple's world. They panicked. None of their families suffered from the condition. They went to various doctors and Amung underwent many kinds of treatment. Still, there was no change in the boy's condition. He did not speak. He was busy with the only thing he liked: sports, especially ball sports. He spent his time in front of the TV watching football, tennis and badminton. And he was happy just watching children of his age playing football.

"Once I placed Amung in the middle of a field where his friends of the same age were playing football. But he only stayed for a while. When he had the chance to kick the ball he seemed surprised with his ability to kick it. Then he ran to the sidelines and just watched his friends play," said Dwi.

More recently, Amung also showed attraction to computer games. He was very quick to master these games, even the ones which his father could not play. He showed rapid progress in interactive games each day until he was not interested in them anymore.

Their son's intelligence lifted Dwi and Tuti's spirits. They held a slight hope that some day Amung would be able to speak and attend school like his two elder sisters.

So, apart from seeking treatment from doctors, and even shamans, Dwi never stopped teaching his son the alphabet.

"I was taking an extreme approach," said Dwi. "Every day I showed him the letters b, o, l and a, and spelled them out in front of him." The word bola means ball.

Amung did not react, although Dwi did it for months. He did not speak, or even show eye contact.

Medication continued in various ways. Dwi once tried a high dose vitamin E treatment on the advice of Dr. Diah Puspita, treasurer of the Indonesian Autism Foundation. The treatment had been effective for Diah's son, Irsan, who also suffered from autism. Irsan, then six years old, finally managed to drink water by himself.

But the imported medicine was beyond Dwi's means. The employee of a publishing house in West Jakarta compelled to opt for other treatment.

He collects literature on autism. He is now closely studying a report by Stephen B. Edelson, a medical doctor and an autism expert from the Environmental and Preventive Health Center in Atlanta, USA.

Edelson also writes about the discovery by P. Shattock and K. Reichelt on a gluten and milk diet presented by A. Knivsberg in a 1996 European Autism Association International Congress in Barcelona. The diet was proved to have a positive influence on the function of the brain. An autism patient, who volunteered for the study, took seven days to return to the level which he had reached earlier only because he did not follow the diet of biscuits.

It was a pity that the diet did not suit Amung, who did not like rice, and so far had relied on milk for his main nutrition.

Dwi then asked for the help of Haidir, an ulema living in Ciledug, South Jakarta, who gave him holy verses from the Koran to be spoken by Dwi and Tuti at certain times. Amung was once given a bath with water for which special prayers had been said.

The only thing that continued to take place was Dwi's teaching approach. The letters b, o, l and a were communicated to Amung each evening.

In June 1997, exactly one month after Haidir's treatment, as usual, Dwi took the blocks of letters and placed them in front of Amung while spelling out the letters. Suddenly, Amung shouted "Bola!". The whole family was stunned. Between believing and not, Dwi continued his lesson. Although Amung's voice was not heard anymore there was a very happy development. The boy made eye contact. Dwi, who had vowed to slaughter a goat if Amung spoke, immediately took his savings and bought a goat.

Although difficult in the beginning, Dwi continued his approach by communicating words with a relevance to the world Amung liked. Dwi and his wife agreed to continue saying the prayers taught by Haidir. One month later there was another happy development in Amung's condition. He started spelling words in English that he found on television, in newspapers and on roadside billboards.

The speed with which Amung reads and understands Indonesian (and English, though more limited) is unfortunately not followed by developments in socialization and arithmetic. Amung frequently did not pay attention to what his teachers and friends said. He prefers to keep to himself, doing the things he likes.

As for mathematics, Amung, who can fluently count from one to 20, still needs an abacus to add and subtract. He was admitted to the higher grade of a public school kindergarten, but still easily reverts to his behavior of non-communication with his environment. Dwi and Tuti realize that they should not neglect their struggle, and that the road to Amung's healing is apparently still long and tortuous.