October 14, 2022
JAKARTA – People who have been diagnosed with autism spectrum disorder (ASD) can find navigating life in Indonesia to be more difficult than other adults, as some individuals with the condition and their parents have shared.
“My classmates would often clap or cheer at me in a derogatory way whenever I did something. I was often bullied, which is hard to forget,” a 21-year-old law student from Jakarta, who asked to use the pseudonym Dimas, told The Jakarta Post, describing the challenges he faced as a child. Dimas was diagnosed with autism spectrum disorder (ASD) at the age of 3.
“Even these days, I’m super cautious when choosing who to trust. When I’m socializing, I always suppress my autistic traits to prevent others from labeling me as a ‘weirdo’,” he saidc.
Like Dimas, Bayu Dwityo Wicaksono was diagnosed with ASD, but his diagnosis came just this August as a 31-year-old.
“I always wondered if there was something different [about] me. I believed I could function normally, but whenever a trigger distracted me, I would have a headache,” said Bayu.
In its article to mark World Autism Awareness Day on April 2, 2018, the Health Ministry notes that 2.4 million Indonesians are born with ASD and 500 new diagnoses are recorded each year.
Maisie Soetantyo, a 52-year-old family therapist and inclusivity trainer who is based in the San Francisco Bay Area and works with clients in both the United States and Indonesia, said the actual figure could be higher.
“The number of autism diagnoses may be higher than currently reported, because getting a proper diagnosis and support is a [luxury] for individuals,” added Maisie, who has ASD.
Many autistic individuals are more than three times likely to be targeted by bullying, according to Pemuda AustismeIndonesia, a nongovernmental organization.
Bayu is no stranger to bullying, which he experienced from elementary to senior high school. Some students made fun of him because of his self-stimulatory behavior, also known as “stimming”, which are involuntary, repetitive movements or vocalizations, whether sounds or words.
“The bullies stopped when I was in junior high, though, as I was able to control most of [the stims],” he said.
As an adult, Bayu constantly faces challenging situations at work, such as becoming stressed when customers yell at him.
“My ears buzzed, which I thought was something normal, but it continued until I turned 30. Another uncomfortable experience was when someone degraded me. It drained my energy to overcome it,” he said.
“When I experience pressure outside the workplace, I would cry to my close friends [for comfort],” said Bayu, emphasizing that having a support network was important.
Maisie explained that autistic individuals had different sensory, communication and information processes, and that lack of understanding about this led to the common misperception that autistic people were unmotivated, distracted or incompetent.
Moreover, different individuals had different needs depending on their particular disorders and stage in life. For example, an individual with nonspeaking autism generally needed greater support than autistic people who were able to communicate verbally.
Hersinta Suroso, whose 18-year-old son Muhammad Auzriel Pasha was diagnosed with nonspeaking autism at just 2.5 years old, said that raising a child with unique abilities required twice as much patience from a parent, especially when the communication between the child and parent was compromised.
“Parents need to understand their child’s [genuine] interests, so we need to invest our time in them,” said Hersinta, who took Pasha to a psychologist when she realized he was exhibiting speech delay.
“Since my son was pursuing formal education up to grade 2 in elementary school, as his psychologist suggested, he needed to focus on practicing daily activities,” she added.
Hersinta said that today, Pasha needed to focus more on independent living skills, such as cooking, personal care and hygiene, house cleaning, crafts, playing music and swimming, his hobby.
“Some individuals think that autism is treatable, though it is not categorized as a disease. Often, people say that your son must be a genius, but different people have their own challenges,” she said, and that this sometimes required a compromise.
Adults with autism often experience difficulty getting a job. Meanwhile, their parents deal with their varying responses as they wonder where they might find employment.
To date, there is no specific employment data on autistic individuals in Indonesia.
Nadhif Rizky Rahmatullah, 23, who has a degree in English literature, said it was hard for him to find a job until his cousin applied on his behalf to the Kouji Genki Project, which bills itself as a “special cafe run by neurodiverse [people]”.
“It is hard to find a job, and you want to be more independent. I think inclusiveness could be good for us to see better life prospects,” said Nadhif, who now works from 11 a.m. to 6 p.m. as a barista at the cafe.
Yumiko Hirano, whose son Kouji Santoso Eto has ASD, on realizing that opportunities were extremely slim for special needs children, founded the Kouji Genki Project to support her son’s passion for coffee as well as other people with autism or disabilities.
“So that people with special needs can also work,” Kouji told the Post. Kouji goes to the cafe every day to greet his peers and teach them how to make coffee. While he might be shy at first, he has a lot to say, including his automotive hobby.
“If they are trained, they can do it, as there is no such a thing as impossible,” Hirano said, pointing to the benefits of building an optimistic approach to life.
“Communicating with many visitors is challenging,” she added, including explaining the menu, “but these children are willing to learn.” Hirano also stressed the importance of involving individuals with different abilities.
“No such a thing as impossible,” she reiterated.
Misrepresentation & visibility
However, people with ASD also face a downside from the misrepresentation of autistic individuals as excelling in certain fields, such as music or mathematics, often driven by media coverage.
Hersinta had noticed that the media often praised people with autism for their unusual abilities. One prominent example was the South Korean drama, Extraordinary Attorney Woo, which stars Park Eun-Bin as fictional lawyer Woo Young-Woo, who has high-functioning autism.
Dimas said that people often asked him why he wasn’t a genius, like how the media described autistic individuals. “It’s kind of hurtful when they say that,” he said, and that more efforts were needed to create greater visibility for and social inclusion of auctistic people.
He also expressed the hope that his workplace would eventually accept autistic employees by providing individual pods or cubicles to aid their concentration. “Such a simple thing will help [autistic] individuals integrate better in society,” he said.
Separately, Maisie noted that it was important for the autistic community to support each other, regardless of their differences, as even the most capable autistic individual might need time to process information and make decisions. “Without proper accommodation, we’re eventually going to hit a wall,” she said.
Maisie also encouraged parents with both autistic and non-autistic children to have more conversations at home about inclusivity and what it actually meant: that people were willing to do more than notice when someone needed help. Whether a person was diagnosed with ASD, Down syndrome, a mental illness or dyslexia, they all deserved a sense of belonging, she said.
“We simply want to be treated as equals,” Dimas underlined.