Life With Autism is Full of Challenges

From Jakarta Globe

By Anna Egutkina
8th May 2013

A teenage girl is sitting peacefully in the corner outside Mandiga, a school in South Jakarta for children with autism. She seems to be in another place, lost in a world of her own, humming and squeezing a plastic straw in her hand.

Unexpectedly, she jumps up and runs around, screaming loudly and twisting her face into a variety of expressions.

Unpredictable and repetitive behavior is typical for children with autism, a disorder of neural development that first appears during infancy or childhood. Symptoms and severity vary greatly.

Nuha Fithriya Nafisa,14, does not speak, and sits in the bottom 20 percent of the autism pyramid, meaning significant cognitive improvements will requires enormous effort from her parents.

“Nuha was first diagnosed with autism at the age of 1 year and 2 months. My wife and I tried to deny it and search for options to cure our daughter, but deep down we knew Nuha was different from other children,” says Nuha’s father Krisnadi Yuliawan Saptadi.

Nuha grew up as a very active child who struggled to sit still. She never made eye contact with her parents. The tendency to avoid eye contact is a pervasive trait among autistic children.

“Some 10 years ago we used to force autistic children to look us in the eye, but nowadays we do not do it anymore as the understanding of autism has increased,” says Adriana S. Ginanjar, a psychologist and principal of Mandiga. The school has some 20 students and around 30 more attending the afternoon individual therapy sessions.

“We teach children to count, read, write and also useful everyday knowledge, for example how to behave in a supermarket. Of course, the levels of the students are very different and some can only learn around 20 new words,” Adriana said.

When it was founded in 2000, Mandiga was the only school for non-verbal autistic children in Jakarta.

Nuha has attended Mandiga since she was 2 after her father discovered the school through Yayasan Autisma Indonesia (Indonesia Autism Foundation).

“This school and therapy center is like a blessing, otherwise I have no idea how we could afford even the basic education and therapy for Nuha. I am just a freelance journalist, I don’t earn much” Krisnadi explains.

“In Indonesia, all the therapies needed have to be paid for by parents. A middle-class family struggles to pay for the full range of therapy, since it is very expensive,” confirms YAI founder and chairwoman Melly Budhiman.

“No insurance company is willing to take on an autistic child. The government has just begun to realize the needs of autistic children during the past two years, but nothing concrete has been done to help them yet.”

Until she turned 8, communicating with Nuha was almost impossible. Her parents invited home therapists to teach her, but nobody knew whether Nuha actually digested the lessons or had any understanding of her surroundings.

“I had no idea whether Nuha had any thoughts at all. But when I almost gave up hope of ever communicating with my daughter, one of the teachers at Mandiga managed to ‘unlock’ Nuha’s silence by teaching her to type with a simple device,” Krisnadi recalls.

That turned out to be a massive breakthrough, with Nuha able to absorb more details and have a better understanding of things. She even claimed that she had learned to read at the age of 4.

Before her interview with the Jakarta Globe, Nuha, who has also had some of her poems on display in several autistic exhibitions, typed on her father’s computer: “I want to look good when I meet the journalist, I don’t want to look like a weird kid in the picture.”

“But do not get the wrong impression. Even though Nuha’s typing capability has improved over the years, typing is still hard for her,” Krisnadi says. “One short answer can take hours to type. Between letters she might scream, jump or run around, so communicating with her is still extremely difficult and requires lots of patience.”

Typing is also a burden for Nuha as her mind often works faster than her typing skill level, which has lately left her feeling frustrated and not as eager to type.

But during the interview, Nuha reached for her father’s phone to type a message. “I feel shy in front of the journalist,” she wrote in Indonesian after several minutes of typing.

The afternoon classes at Mandiga are over, and it is time for Nuha and her father to head home. Nuha’s repetitive behavior continues as she sways from side to side and knocks things over. The nature and behavior of a severely autistic child are not easy to understand. It may take years to adjust daily life to fully support the child’s needs. Krisnadi calls it a “never-ending process.”

“Sometimes I still think ‘Why did Nuha turn out like this? What would her life have been like otherwise?’ It’s a question of a lifetime,” Krisnadi said.

“I try to avoid thinking about Nuha’s future, because it simply hurts too much.”

The number of children diagnosed with some degree of autism is increasing alarmingly all over the world, and Indonesia is no exception. Data collected by the Autism Research Institute in San Diego estimated that 1 in 500 children was autistic in 2000. But recent US studies show 1 in 88 children are diagnosed with an autism spectrum disorder, although some manage to shed that label as they grow into adulthood.

The prevalence of autism seems to be increasing in Indonesia, although this is undoubtedly due in part to increasing awareness of the condition leading to more diagnoses. Poor record-keeping means a valid statistical analysis of autism across the country is difficult.

“Autistic kids are found on every island. We only know about those whose parents can afford to come to Jakarta for diagnosis and treatment, but there are many families who cannot afford to treat their autistic children,” Melly explains.

The chairwoman emphasized that there is a spectrum of degrees of autism. Those children with a diagnosis of mild autism detected in early childhood, who receive intensive treatment, and have normal to high IQs, are able to attend regular schools. Some earn university degrees and live a normal life.

One of them is 18-year-old Muhammad Valdy Fadhyo. Despite being diagnosed with autism at the age of 2, he attends a regular school.

“Sometimes I have concentration problems and everything goes blank. I have also experienced bullying. At school students would stick a piece of paper saying ‘crazy’ onto my back,” Valdy said.

“When Valdy was diagnosed with autism in 1996, there was very little information about it available. Even the doctor could not explain it properly,” says Valdy’s mother Yaty Nurhayati Rusli. “In 1997 I turned to YAI for advice, and Dr. Melly Budhiman helped us to get therapy and suitable medication.”

“At that time the increasing prevalence of autism was not understood. There was panic in the community. Autism was thought to be a new infectious disease, and children with autism were being ostracized,” Melly said.

For many, autism is an incurable disorder, but thanks to the medication and therapy in his early childhood, Valdy’s symptoms have eased with age. While people may notice his repetitive behavior and occasional lack of concentration when keeping a close eye on him, Valdy does not let it get in the way of his dreams.

“I am interested in history, so I want to become a history researcher. I am planning to go to State University of Jakarta. I have never been abroad, but I would really like to go to Europe and see a football match. I am a big football fan, Arsenal and Barcelona rock,” Valdy said.

The young man has also won several swimming competitions for regular children. “I put Valdy in a swimming club when he was 8, and I am proud of his achievements,” Yaty said. “As a mother of an autistic child, I would like to say, ‘Never give up.’