Life still goes on
Having been blessed with an autistic son, Charles Siaw, 58 and Roselind Wee, 60 had braved the hardship together; coming out stronger than before. Initially, their son was not found autistic as a toddler. Not a typical case, their son, Jonathan Siaw was diagnosed with a late-onset autism spectrum disorder.
According to autismspeaks.org, autism, or autism spectrum disorder, refers to a range of conditions characterised by challenges with social skills, repetitive behaviours, speech and non-verbal communication, as well as by unique strengths and differences.
Among the symptoms of autism are social challenges, communication difficulties, repetitive behaviours, genetic disorders, seizure disorders, sleep dysfunction, sensory processing problems, and pica (tendency to eat things that are not food), however, symptoms vary according to the child.
Roselind recalled her son being able to speak both English and Mandarin fluently before he turned four. However, Jonathan’s behaviour changed within a year. “It started with constant shouting. Then his speech deteriorated, and he was hyperactive.”
The couple spent two years running around searching for a diagnosis, but thirty years ago ‘autism’ was unheard of. “Nobody could tell us what was wrong with him. It was a very agonising time for us as we did not know what to do,” said Roselind.
Jonathan was not diagnosed until they visited a doctor in Kuala Lumpur to test Jonathan’s hearing. “A parent noticed Jonathan’s behaviour and asked if he was autistic. So we visited a recommended doctor and finally got our diagnosis.”
After the diagnosis, Charles conceded that he was always questioning his faith and why he had to go through this agonising path. “It was a tough time for us. Accepting was not easy. The turning point was when Jonathan got lost when he was 8 years old.”
Charles disclosed that he had brought Jonathan out to a local mall and while he was browsing through some items at a shop, Jonathan wandered by himself. “I was distracted and I lost him. It was such a distressing moment. We even reported him as a missing person.”
That same afternoon, the parent of two received a phone call regarding their elder son. “We met him at the Waterfront’s police booth. We were told he was found in the Sarawak River with only his fingers up. Thankfully, a boatman saw it, rowed over and pulled him out.”
The couple also added that till this day, they did not know how Jonathan ended up in the river — the memory is only known by Jonathan.
After sharing the incident with New Sarawak Tribune, Charles concluded that Jonathan’s disabilities as a test from God. “At that point, I thought God had saved him, so he must have some plans for him, for us — I took it as a cross I that have to bear.”
Despite the limitations, the family continues to power through, and Roselind’s motivation to move on is the constant joy that her daughter has brought her. “Life still goes on,” the retired lecturer said. Meanwhile, Charles holds strong to his faith as a motivation in life.
As for Jonathan, he is still a low-functioning autistic adult, and less hyperactive, but despite all that, he is still deep down very happy about life.
Kuching Autistic Association
Being the first president and vice-president of Kuching Autistic Association (KAA), Roselind and Charles were two of the six parents (three couples) that founded the association in 1998. Initially named Sarawak Autistic Association, the three families came up with the funding and resources to hire a teacher for their first autistic educational centre.
The first class started with only three children, Roselind said it was essential for the establishment. “For Jonathan’s case, he was hyperactive. He could not stay in any school, and no centres would accept him as he could not sit still.”
When they started in the late 90s, the level of awareness for autism was low. The families had to work hard to share knowledge through public talks, radio talks and newspaper articles.
Registered as a non-governmental organisation (NGO) on May 6, 1998, KAA provides one-to-one therapy and training, usually for two hours daily, or on alternate days. Students aged 4 to 12 attend KAA’s Elementary Intervention Programme (EIP). This programme aims to enable children with autism to learn how to communicate, develop social skills, learn personal hygiene skills and cognitive skills such as reading, writing and arithmetic.
Applied Behaviour Analysis (ABA) is the main therapy practised at the centre. Structured teaching based on TEACCH principles, gym exercises for gross and fine motor development, play therapy, art, group activities, indoor and outdoor activities are among the other intervention programmes implemented at the centre.
Older students, aged 13 to 17 years, attend the Secondary Intervention Programme (SIP). In this programme, students will continue learning basic academic skills. In addition, they are taught daily living skills too, to enable them to take steps towards independent living within a sheltered environment. They also participate in some pre-vocational activities e.g. making craft items, planting vegetables, car wash, laundry, cooking and house-keeping skills.
The autism spectrum disorder is a lifelong disability. Thus, it is only natural that parents that they worry for the future of their autistic children. “When we are gone, what will happen to him?” questioned Roselind.
With the worries building up each passing day, parents with autistic children are constantly on their feet. Roselind hopes that KAA will be able to gather enough funds to build a community group home for the autistic adults.
Relying on public donations, KAA hopes to see the group home a reality for the adults diagnosed with autism. “It is an urgent matter as many of the autistic adults are growing older with their parents also advancing in years, with little to no energy left to care for them,” said Roselind.