Adeline Lim first twigged that something wasn’t right with her then-1-year-old son, Jayden, because he didn’t respond to her when she called his name; he was so engrossed in his own little world of toys.
Her suspicions were confirmed when she noticed later that her son wasn’t really talking and “all the key milestones were a little late”. “My husband thought I was paranoid and my mum said I was crazy. But these things — you just know.”
Now 8, Jayden was diagnosed with autism spectrum disorder (ASD) just before he turned 3, after she engaged a psychologist to observe him at home. At that time, he had the cognitive capacity of a 5-month-old.
Statistics also show that boys are three to five times more likely to have autism than girls, although experts are unable to pinpoint reasons why. In addition, other conditions, such as Fragile X syndrome (a genetic condition that causes a range of developmental problems including learning disabilities and cognitive impairment) and tuberous sclerosis (a genetic disease that causes benign tumours to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lungs and skin) may accompany autism.
Signs of autism
Children with ASD either have difficulties communicating — both verbally and non-verbally — or face delays in areas like social interaction. They often engage in repetitive behaviour, feel a need to adhere to specific routines or are preoccupied with certain objects, explains Alex Liau, clinical director of Nurture Pods Early Intervention Centre, an autism education school at Novena Specialist Centre.
Common signs these children exhibit include not being able to make eye contact and delays in language acquisition. They also have difficulty looking in the same direction as another person, and having difficulty relating to and showing interest in others.
How ASD affects people varies widely as this disorder ranges in severity. Every child within the autism spectrum has unique abilities, symptoms and challenges. The most severe being “low” functioning and the least severe being “high” functioning. Low-functioning children may throw temper tantrums or behave in a socially inappropriate manner, while high-functioning ones are able to manage their own behaviour, although they are a little awkward and find it difficult to make friends.
Understanding the condition
As a toddler, Jayden had frequent meltdowns when he became frustrated with unfamiliar places and situations. Lim said her family could only dine at obscure little places, so that his behaviour would not affect other patrons. She says, “It was pretty traumatic. People who don’t understand simply think the child is misbehaving.”
A stickler for routines, he’d always insist that his parents drive home using only a particular route, no matter which direction they had come from. Lim recalls, “He had to go by that one way. Otherwise, he’d scream and go hysterical — he had no other way to express himself.”
Though Lim — who has two younger children, Jamie, 1, and Ashley, 5 — was hesitant about adding to her brood, she’s glad she did. “I think having siblings did help him, as Ashley often tries to get him out of his shell,” she chuckles.
“We don’t want sympathy — we want inclusion.”
Early intervention needed
Experts stress that early intervention is key when managing ASD. Learning to communicate effectively early on also helps the child gain control of his environment in a way that is not disruptive or aggressive. Liau advises parents to seek the advice of a paediatrician or a psychologist if they suspect that their child is autistic. While many types of therapies are available, he advises parents to pick those that have a proven track record.
Some parents put their children on special diets, such as the “Gluten Free Casein Free Diet”, as it’s thought to reduce symptoms like hyperactivity, temper tantrums and eye contact problems. In the latter diet, the child avoids all food and drink containing milk and certain cereals like wheat, oats, barley and rye. However, Liau asserts that such diets have to be paired with therapy in order to reach the desired outcome.
There are countless examples of autistic people who have overcome their condition and gone on to lead normal lives. This depends on where the individual is on the spectrum and what access he has to quality intervention programmes, he adds.
Accepting the condition
At the end of the day, Lim hopes that society is able to embrace her son’s condition. “We don’t want sympathy — we want inclusion,” she says. Because of her job, her family moved to China shortly after Jayden’s diagnosis, “where there was hardly any support for special-needs kids at all”.
Following this stint, they lived in Australia and the UK, where children with special needs are “more widely accepted” and in-home therapy is “affordable”. When Lim returned to Singapore some three years ago, she was relieved to find vast improvements in our ability to help sufferers.
Learning to adapt
Jayden is now settled happily in a mainstream primary school in Singapore, where a privately engaged shadow teacher assists him in class. Though shadow teachers are costly — Lim pays more than $5,000 a month for this service — she notes, “His teachers are happy with this arrangement as the shadow teacher acts as a teacher's aide as well.”
She notes that they decided to place him in a mainstream school instead of a special-needs one because they didn’t want him to live in a “bubble environment where everything was artificially catered” to his special needs. “We want him to thrive in a real-world setting and learn to adapt.”
Things haven’t been easy academically for Jayden. Lim acknowledges, “For instance, when he was 4, he had the verbal skills of a 1-year-old. He still doesn’t speak like a typical 8-year-old,” she says. At some point, her son “might not be able to fit into the mainstream academic route”, so an international school or homeschooling are options she is considering, she notes.
But she remains upbeat. “As long as he gets to the destination, it doesn’t matter how long the journey is — we believe he will get there. We’re just happy to see progress on a regular basis,” she sums up with a smile.
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