What is it like to raise a child with high-functioning autism in Singapore? One brave mum shares her inspiring story with EVELINE GAN.
What is it like to raise a child with high-functioning autism in Singapore? One brave mum shares her inspiring story with EVELINE GAN.
Margaret Shaikh had always known that her younger son was different from other kids.
While his peers were learning their ABCs at age three, Manoah had already figured out how to read most words in the newspaper fluently. Now aged 10, he also has an exceptional memory and learns fast.
But along with those signs of giftedness came the terrible temper tantrums and meltdowns.
As a baby, Manoah cried inconsolably every day. When he entered his toddler and preschool years, the uncontrollable meltdowns turned violent.
The biting, hitting, head banging and rages left his parents physically and emotionally drained – and at the receiving end of unkind comments and judging stares from people around them.
“Bringing him out was always challenging because he was unpredictable. For many years, we were unable to eat out because he could not sit through a meal. And if we travelled via public transport, his behaviour may cause a disturbance,” shares Margaret, 41, a stay-at-home mum. She has another son, aged 12.
Manoah’s “difficult” behaviour turned out to be autism.
In 2012, he was diagnosed with the condition after seeing a specialist at KK Women’s and Children’s Hospital (KKH) for his tip-toe gait.
“After the first consultation, reality sank in. Besides his tip-toe gait, we realised that he might have special needs,” says Margaret.
Up to 1 in 100 children here with autism
About one in 100 to 150 children in Singapore has autism spectrum disorder (ASD), says Dr Mae Wong, senior consultant at the Department of Child Development at KK Women’s and Children’s Hospital (KKH).
It is a neurodevelopmental condition that affects the brain development from early childhood.
Children with ASD have great difficulty communicating and forming relationships with other people, and in using language (see Spot the signs).
The condition is a lifelong one, Dr Wong adds. KKH diagnoses approximately 650 children with the ASD each year.
“There are also currently no medications that treat the main symptoms of ASD, such as social communication/interaction difficulties, although doctors may use some medications in some patients to treat other symptoms like hyperactivity, inattention, irritability and anxiety,” she adds.
The range of severity and symptoms of ASD is very wide. While some children are unable to speak and may also have intellectual disability, others are considered “high- functioning” (see What is high-functioning autism?) and can speak, read and write.
Following her son’s autism diagnosis, Margaret’s initial reaction was of despair, fear and self-doubt.
“It seemed surreal even though I always knew Manoah was different from other kids, and we had difficulties raising him,” Margaret shares.
“I remember taking (the doctor’s diagnosis) well until I reached home, and my heart just broke into pieces for my poor child. My husband could not come to terms with the diagnosis initially and was in denial for a while.”.
“But I did not have the luxury to indulge in my own misery, knowing that my two young children needed me. I had to put my feelings aside and remain strong for them, as well as for my husband,” she adds.
Rising above the fear and despair
While the months after the diagnosis, which involved Manoah undergoing multiple tests, were frustrating and often discouraging, there was also hope for the family.
The Department of Child Development team at KKH laid out an action plan that catered to the family’s needs to help them cope better.
Besides attending physiotherapy and wearing foot braces for his tiptoe gait, Manoah underwent occupational therapy.
Things started falling in place after Margaret and her husband attended a parenting support course.
“We decided that there is no better caregiver than the parents of the child. Both my husband and I also agreed not to have a domestic helper for the same reason,” Margaret shares.
The hands-on parents created their own “therapy” sessions that included regular play sessions at the playground.
“This not only helps Manoah to get along with others, but also gives his older brother, Aaron, an opportunity to understand and bond with him and protect him from bullies,” Margaret says.
“As a full-time stay-at- home mum, I benefit by getting some ‘me-time’ from their playtime, too.”
Being open about their son’s autism helps, as misunderstandings often occur due to a lack of understanding, she shares.
“When someone looks offended or makes rude or unkind remarks, we will step in and inform that person that Manoah has autism.
“Their usual reaction would be ‘Sorry, I did not know. Your son looks so normal... he doesn’t have autism, lah!’ It re ally helps in his transition to new places and meeting new people,” she says.
“Children with ASD can learn… but they see the world differently and learn in more visual ways.”
Manoah Shaikh (centre) and his family.
Thriving with the right support
Now in Primary 4 at Greendale Primary School, Manoah is proof that children with autism can thrive with the right support.
Besides receiving the Edusave Character Award from Primary 1 to 3, he has also received the Top Three Student and Model Pupil awards, among other accomplishments.
Although the first year was challenging and fraught with frequent after-school meltdowns, support from the school helped ease him in gradually.
“Thankfully, the school’s allied educator has been fully committed to helping him in the past three years. He is now adapting well in school and has even found a few good buddies whom he gets along well with,” Margaret says.
His temper tantrums have also mellowed, which Margaret attributed to the consistent use of the “praise method”.
“For example, I would praise him with two thumbs up and a goofy smile to show how pleased I am when he listens to instructions. Manoah really likes it when he sees us being happy with him. In the heart of every child is a simple heart to please,” she says.
As autism is a neurodevelopmental condition, it cannot be "cured". However, kids can improve and progress with therapy, Dr Wong says.
“Parents should understand and realise that every child is different, and children with ASD can learn… but they see the world differently and learn in more visual ways.
Children with ASD may not fit well or learn in a typical classroom, but can thrive if given the correct support,” she adds.
Accept your chld
Margaret’s biggest joy is seeing Manoah blossom into a loving, cheerful and kind- hearted boy.
“We recently volunteered together as a family for the Boys’ Brigade Share-a-Gift Project. Manoah enjoyed himself so much when we went grocery shopping for gifts and helped distribute them with a joyful heart,” she says.
While the years raising Manoah were daunting, Margaret shares there have been many silver linings along the way, among them, learning what it means to be a genuine person.
“Raising Manoah made us rise above our own selfishness. We found joy and contentment in the smallest things – what matters is we stay together as family.
“His condition has also helped my elder son to have loads of understanding, love and compassion towards children with special needs,” she says.
Margaret encourages parents with special needs children to accept their child’s diagnosis with grace.
“Being in denial will only cause more pain to you and your child,” she says.
“When you remain positive and learn to accept your child’s ‘language’, be it through speech, actions or behaviour, you can overcome and conquer each and every challenge. Do not despair and give up hope.”
Spot the signs
Early signs of autism can be detected from the age of one year by trained doctors and nurses, says Dr Wong Chui Mae, senior consultant at the Department of Child Development at KKH.
CLASSIC EARLY WARNING SIGNS INCLUDE:
• Poor eye contact or no response to name at any age.
• By 12 months old: No babbling or cooing. No use of social gestures such as pointing, showing or waving.
• By 18 months old: No single words. No shared enjoyment. No interest in other kids.
• Any regression in language, words or social skills.
• Unusual interests or responses, such as such as repeatedly opening, closing, spinning things, odd interests in drain holes or escalators.
Kids with suspected autism will usually need to undergo a full developmental screening with a child development specialist, Dr Wong says.
What is high-functioning autism?
High-functioning autism is not a formal diagnosis. But it is used when an individual with autism can speak, read, write and is likely to integrate into mainstream school.
Children with high- functioning autism often speak phrases, but may echo or repeat things that other people say to them, KKH’s Dr Wong explains.
They may speak with unusual accents, such as in a Westernised or robotic accent, and may also have very advanced reading or maths skills.
PHOTO MASTERFILE
