Early detection is best treatment for autism

By Rita A. Widiadana

In this increasingly elaborate world of communication, there is a group of people excluded from even the basic means of interaction. They are autistic children, and there are about 400,000 across the nation. They do not have the ability to convey their emotions, desires or needs. Although more research is being conducted, autism remains a little understood medical enigma. The following articles probe treatment of the disorder and one family's struggle to bring their son out of his dark world.

JAKARTA (JP): Amid the fun and games of his third birthday party, Danny sat still and gazed out the window.

Like usual, he did not speak to his parents or play with his two brothers.

He appeared oblivious to the mound of presents, still in their wrapping paper. He ran to his room and locked himself inside.

His parents, Riana and Hadi (the family's names are pseudonyms), had long suspected something was wrong with their second oldest son. He was indifferent to sounds or visual stimuli. He did not hold on to objects and shrunk back when hugged or held. He avoided eye contact.

The parents consulted with doctors at major hospitals but there was no improvement in his emotional and intellectual development after a year's medication.

Although he was in perfect physical shape, he was unable to communicate and express his feelings like other kids of the same age. The doctors offered varied diagnosis, ranging from severe speech delay and hyperactivity to acute mental retardation.

"I felt very desperate and shocked when they told us that our son was mentally retarded. I knew that I couldn't act against God's will. But my instinct told me that Danny was not what they diagnosed," Riana recalled.

Danny's parents tirelessly searched for other medical opinions. They finally ended up at the office of a child psychiatrist at a local hospital here.

Dr. Melly Budiman listened thoughtfully to their stories and carried out intensive observations of the boy. Her diagnoses: Danny was mildly autistic.

Like Danny, many children with autism are often misdiagnosed as having speech delay or hyperactivity and thus receive inappropriate medication and therapy, she explained.

Autism, she said, must be detected as early as possible. Therapy and medical treatment are more effective if administered when the child is still young. Danny, then four years old, was late in receiving therapy. Unfortunately, he is not alone.

"There are thousands of autistic children in Indonesia and most of them do not have access to appropriate medication because it is still rare and quite expensive. Besides, many parents were too late in seeking professional help for their kids," she said.

The psychiatrist described autism as a specific disorder of the central nervous system. Autism strikes 14 to 15 of every 10,000 newborns, she said, adding that it affects four times as many boys as girls (see accompanying article on this page)

Each year an estimated 0.15 percent, or 6,900 babies, of Indonesia's 4.6 million newborns suffer from autism. The number of autistic people in Jakarta is around 20,000 from the estimated 400,000 nationwide.

"We are now facing a pressing problem. As the number of autistic people is rocketing, we still lack medical and educational facilities to accommodate them," Dr. Melly said.

Specialists in the mysterious condition are scarce in Indonesia and Asia in general. Even the West has few doctors specializing in autism, said the doctor, who is now focusing on treating autistic children.

This accounts for the paradox of a lack of medical research and studies, despite increasing reports of autistic children in the United States and other developed countries since the early 1960s.

Hollywood

Autism has got more attention thanks to the power of Hollywood in breaking down barriers and educating the global public. Rain Man, the 1989 Barry Levinson film starring Dustin Hoffman, was the cinematic vehicle for spreading the message.

It was an unusual subject for a critical and commercial which won four Oscars in the categories of best film, director, original screenplay and actor for Hoffman's portrayal of the institutionalized autistic who has a knack for memorizing numbers.

While definitely not produced as a public service, Rain Man was a hit among medical professionals and the public. Global appeal lies in Hoffman's remarkable performance and the film's unsentimental treatment of the disorder.

It encouraged professionals in several countries to carry out more advanced studies and establish autism centers.

This concern has also reached local medical experts. Dr. Soemarno Wignyosumarto in Yogyakarta and Dr. Samuel Lazuardi, a neurologist at Cipto Mangunkusumo Hospital in Jakarta, have both been active in studying the disorder.

A special clinic for child development at Harapan Kita Children and the Maternity Hospital on Jl. S. Parman, West Jakarta, have already introduced special programs on early detection and treatment.

In 1990, the first school for the autistics was also established by the Nirmala Nughara Foundation on Jl. Tarogong Raya, South Jakarta. Special schools for autistics are now found in Jakarta and other major cities.

The most recent addition is the Autisma Foundation, a non- profit organization established last March by a group of medical professionals and parents of the autistics.

The foundation's office is at the Jakarta Medical Center (JMC) on Jl. Buncit Raya No. 15, South Jakarta, tel. 7940836; fax 7940838; E-mail jmcinfo@rad.net.id.

Dr. Melly said the country still needs more.

As so little is known about the condition, nobody is really sure of the long-term gains of therapy and medication. But Dr. Melly believes today's studies will one day help autistics integrate better within their communities.

There are famous success stories. Temple Grandin got a doctorate and is now working as an associate professor at Colorado State University in the U.S.. In the Netherlands, 30- year-old autistic Kees Momma has just released his autobiography about his experiences.

Danny, now nearly six years old, has made remarkable progress after two years of therapy.

He has shown promising development in his speech, emotional and intellectual levels. He is now enrolled at a kindergarten near his house, and receives remedial classes from his schoolteachers and therapists every afternoon.

He can sing some songs and now chats with his brothers. He will shout in anger or glee. He is becoming affectionate towards his parents.

"Compared to his brothers and other kids, Danny still lags behind," his mother said. "But, at least he has already built a bridge of communication with his surroundings. I broke down in tears the first time he called me mom. That was the most wonderful sound I had heard in my life, and something I had waited for five years."

He has exceptional drawing skills.

"Whenever we take him to one place, Danny will silently record all the details about that place in his memory and then draw them on a piece paper," his father said proudly. "He can draw a city landscape detailed with lines of skyscrapers, a two- way road, crossing bridges, traffic lights and everything in it."

Despite these achievements, he still does not interact well in social situations with people other than his immediate family. But Riana takes one day at a time and is grateful for the gains, however small.

"Every morning when I drive him to school, my heart fills with gratitude to God. Sometimes, I am hurt when other kids make fun of him but I don't let my feelings show. It is only a part of a never-ending process to develop his independence and integrate him into the society."