The Jakarta Post
Ananda Sukarlan’s parents once suspected he was deaf, when the Indonesian classical pianist and composer was a toddler. (JP/Sebastian Partogi)
Ananda Sukarlan’s parents once suspected he was deaf, when the Indonesian classical pianist and composer was a toddler.
“I just didn’t respond when people called me. They subsequently checked my hearing, only to find out that I still responded to auditory stimulation,” the 59-year-old musician told The Jakarta Post in a recent interview.
So what was the problem? He turned out to have a hard time to respond to people.
As he got a little older, he had difficulties interacting with other people, whose presence made him feel anxious. But his parents could not identify the true reason why their son was a little different to the other kids, who were generally sociable.
“Around the age of five, my parents took me to a therapist, who first labeled me mentally retarded due my delayed speech, but after I was eventually able to speak, they said I was a ‘normal’ kid after all,” he said, adding that he had been bullied by his schoolmates.
Besides having a hard time interacting with people, he said he had found it difficult to pay attention in class, causing his grades in various subjects – especially geometry – to suffer.
“My parents couldn’t identify what was actually going on with me,” he recalled.
A 44-year-old mother named Susy was also confused in the past as to what was happening to her son Marcel, who is now 15 years old.
“He did not respond at all when other people called him and had delayed speech; he also threw some really bad temper tantrums. Also, he had poor language articulation skills as well as poor gross motor skills.” Susy told the Post recently.
Susi was shocked once to see her son holding a knife upside down, grasping its sharp edge. Thankfully, he did not cut himself.
Susy finally gained clarity on her son’s condition after taking him to a therapist at the age of three. Her son was diagnosed with Asperger’s syndrome, a high-functioning type in the autism spectrum disorder. Ananda had the same condition, but, unlike Marcel, his condition was not diagnosed until he was 28.
According to Felicia Ilona Nainggolan, a psychologist working for Jakarta-based psychological services and counseling center Personal Growth, the main symptoms of Asperger’s syndrome typically affect two domains of an individual’s life: social interaction and communication.
These individuals find it difficult to open up to other people’s perspectives and to discern other people’s emotions. They find it hard to look their conversation counterpart in the eye. Due to the inability to express emotions properly, these individuals are prone to temper tantrums, according to Felicia.
These tantrums might be triggered by a change in their rigid daily schedules.
“People with Asperger’s don’t like to have their rigid routines disrupted. For instance, if they are already used to going straight back home from school at 3 p.m. to watch television, they might snap up if, instead of taking them straight back home after school, you take them to a relative’s place,” Felicia said.
“But individuals with the syndrome still have good intellectual capacity, while still being able to take care of themselves by conducting daily activities like eating and bathing independently, something that people with more severe autism find really challenging,” Felicia added.
Felicia added that early diagnosis was important to help these individuals acquire the abovementioned skills as early as possible, with the assistance of a professional therapist.
“When you notice that, around age two, your child doesn’t possess the skills – such as gross motor skills and speech development – that others of his age already have, you have to take him to a psychologist or psychiatrist right away,” she advised.
Felicia said researchers had not discovered definitive risk factors leading to the condition. “Some researchers, however, believe that the condition is closely associated with genetic factors,” she said.
While data on the prevalence of the syndrome in Indonesia are not yet available, it is estimated that an average of four in 1,000 individuals – most of them men – have the syndrome.
To raise awareness on the syndrome, as well as the autism spectrum disorder in general, the United Nations General Assembly in 2007 designated April 2 as World Autism Awareness Day.
People with the syndrome have some distinguishing characteristics, including a high interest in and devotion to particular tasks, leading to a neglect of other tasks, Felicia asserted.
They might be very interested in talking about highly specific issues – such as medieval European history – but get bored and instantly turn away from people when the conversation moves to topics besides that particular expertise.
Ananda’s saving grace came when his parents sent him to a piano class. He became obsessed with that instrument as an outlet to express his emotions and connect with other people. He practiced so much that he neglected his homework and even skipped taking a bath. He graduated from senior high schools thanks to private lessons.
Marcel, meanwhile, finds great pleasure in cooking and tasting food, making him a junior culinary expert. This is why Susy plans to send him to a vocational cooking school, so her son could earn a living from his passion and expertise.
“Due to neuroplasticity, their interest and intense focus on a particular task has eventually helped them to grow more neurons in brain areas regulating that function, making them skillful in the thing they are interested in,” Felicia explained.
“If you have a child with Asperger’s syndrome, your child is guaranteed to have one special talent. If you haven’t identified his strong suit yet, you have to be patient and keep looking,” Ananda advised.
“It doesn’t have to be academic,” Susy explained, arguing that non-academic skills – such as Marcel’s cooking – could also help children succeed in life.
Susy admitted that she had found it difficult for a few years to identify her son’s area of specialty, which could help him earn a living.
“I was confused as to how to direct him to identify an area he’s interested in,” Susy said.
Susy admitted that this difficulty had frustrated her, but fortunately, she had not given up on it, until a little serendipity revealed the way forward to her and her son.
“One day, I asked him to join me baking a doughnut. I initially intended to help him refine his gross motor skills through the activity,” she said. She was surprised upon discovering that Marcel’s doughnuts tasted delicious. And the rest was history.
“I want to be a chef,” Marcel said enthusiastically, after he had revealed that his mother would send him to SMK Santa Maria, a vocational tourism school specializing in culinary skills.
Still, possessing creative skills alone is not enough to adjust successfully to adult life. According to Felicia, individuals with Asperger’s syndrome needed to train their social skills – particularly in terms of nonverbal communication and empathy – as well.
Marcel accomplished this through weekly therapy sessions.
“Today, I’ve learned how to greet a person, how to introduce myself to another person and ask something about a person I’ve just met, like ‘what’s your name?’” Marcel, who had just finished his therapy session, told the Post.
While regular children might acquire the abovementioned skills through mirroring and modeling adults, children with Asperger’s syndrome find that difficult to do due to their relative lack of mirroring skills. Therefore, they require therapy.
Ananda, who never went through formal therapy, said he was grateful to his parents, who had always encouraged him to interact with other people when he was young.
“I’m happy with my condition now, because it allows me to make music, making myself and other people happy,” he said, concluding the interview.
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