Last week, I was at a café when I overheard a low growl coming from a teenage boy.
At first, I brushed it off as part of the normal restaurant chatter but it became harder to ignore when the voice turned louder. The next minute, I saw an adult accompanying the youth out of the café.
It ended as soon as it started, so nobody really noticed it, but I’m guessing that’s because an experienced parent knew what to do to prevent a testy situation from escalating into a public meltdown.
But not all parents are so successful.
While some kids throw tantrums because they are tired, cranky or (let’s face it) simply spoiled, autism-related meltdowns are indications of distress as these children often struggle with expressing themselves.
Outbursts in children (and adults) with autism occur because of difficulty in coping with sudden changes, new situations, or sensory stimuli, such as sounds or physical closeness. Sometimes it could be due to physiological reasons, such as hunger or tiredness.
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But aren’t we all like that too, to varying degrees?
Nevertheless, it is a common challenge that parents of children with autism encounter.
Speaking to The Pride, Ayu Suparman says: “On some days, we really don’t want to go out.”
Her husband Gampang Puruhita (or Hita for short) adds in Bahasa: “But our boy is similar to other children, enjoys playing and having fun.”
Their son Naseer, who is turning 4 years old, was diagnosed with autism one and a half years ago.
Says Ayu: “We don’t know how the public would judge us when Naseer has a meltdown. When it happens, it’s very tough to manage.”
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“People in restaurants actually shift their tables away from us. Some even take out their phones and start recording videos. Others would stop to stare at us instead of offering help,” she says, recalling times when Naseer acts out in public.
“Children with autism have repetitive behaviors. For example, banging a spoon on the plate. People who don’t understand would find that irritating, because we can’t stop him, otherwise he goes into a meltdown.”
Naseer is on the autism spectrum, which is a range of neurodevelopmental conditions including classic autism, Childhood Disintegrative Disorder (Heller’s syndrome), Asperger’s syndrome and Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS).
Treatment important, but mindsets need to change too
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The Institute of Mental Health (IMH) says that about 1 in 150 children have some form of autism and it is estimated that about 10% of individuals on the spectrum may display remarkable abilities, whereas others who may demonstrate high performance, do so in areas of high repetitions or obsessions.
According to Health Hub, interventions are individually tailored to help children with autism develop speech and communication skills, as well as (typical) behaviours. The end objective is to support people with autism to gain independence.
No treatment has been shown to cure autism, but several interventions have been developed for use with young children and may be helpful in addressing anxiety, hyperactivity or sleep difficulties. For example, one notable treatment approach for people with ASD is called applied behaviour analysis, which has become accepted among healthcare professionals and used in many schools and treatment clinics.
Hita and Ayu believe that a change of mindset from the public, would help parents of children with autism cope better, as well as help them see their children’s potential, and not their problems.
“Focus on your child’s talents, not their disability,” Ayu tells The Pride. “As parents, we worry about how our children’s future is going to be. Will people accept him? Will others understand?”
Fostering acceptance rather than passing judgement
The goal as a community then, is to cultivate acceptance.
“The future generation needs to continue to advocate and create acceptance for special-needs people,” says Ayu. “It’s not just to generate awareness.”
Hita elaborates: “Whenever our son has a meltdown at home, our neighbour would come over and offer sweets or coax our son not to cry. That’s a display of kindness and acceptance.”
“One way to show acceptance is, for example, when a child has a meltdown in public, don’t make disparaging remarks and assume that the parents are doing something wrong, therefore the child is behaving that way,” says Ayu.
Another approach is to increase visibility and acceptance. For example, including autism awareness ribbons on social media profiles (World Autism Day is on April 2), e-mail signatures and or even print stickers for display.
Support System for Autism Spectrum
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Another important role of the community at large is to provide support for those whose children have autism or other special needs.
“Our first support system is our family members, followed by close friends,” says Ayu. “We need emotional and mental support, not just physical help with caregiving.
Which is not to say that there have already been many efforts made to help children with special needs. In fact, it is one of the areas that Deputy Prime Minister Heng Swee Keat mentioned that would be focussed on in this year’s Budget.
Explains Ayu: “Over the years, more schools for autism (such as Pathlight School and Eden School) and special needs have already been set up. There are also mainstream schools with teachers who are certified or specialised in special-needs education. The Government also provides subsidies for children to attend special-needs schools.”
The Central Singapore Community Development Council (CDC) also supports The Purple Parade – Singapore’s largest movement to support inclusion and celebrate abilities of People with Disabilities.
When asked about what more can be done, Ayu ponders. “To be honest, when we wanted to diagnose our child, the wait was six to nine months long. That period of time is very crucial for early intervention.
“It’ll also be nice for schools to invite speakers or organise sessions to teach students about special needs, to let them know that there are such conditions out there.”
Created podcast for other parents like them
Ayu recalls: “When our son was diagnosed, we went through a stage of denial. We couldn’t find motivation to get through that stage. We all wanted to hear success stories that gave us hope.”
The couple feel that if neurodiversity awareness and acceptance become prevalent in Singapore, on top of the stepped-up efforts from policy makers, parents would not have to worry so much about their children’s neurodevelopmental conditions.
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Says Ayu: “Last year, we were invited to share our autism parenting experience on Facebook Live, and we received messages from others sharing queries and concerns. We’re glad to be making an impact by coming forward to share our journey. That’s how we decided to continue advocating for parents out there.”
This experience spurred Hita and Ayu to launch Parenting Made Special – a podcast for parents and other listeners to hear real stories and learn tips and tricks from experts on how to handle children with special needs.
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“Our lack of prior knowledge could have delayed Naseer’s diagnosis. I advise all parents to pay attention to their child’s milestone checkup at the polyclinic, especially speech development. It’s possible for parents to actually know of their child’s delayed development, for example in speech functions, but remain in denial and take a long time to address it,” Ayu highlights.
Hita continues: “If ever there are doubts about your child’s development, do not be afraid to find out more. I hope our platform helps inform others about symptoms and what to take note of.”
Despite their different ways of social interaction, children with autism have feelings too. They are open to making friends, for example.
“When Naseer plays and socialises with other kids, neurotypical or not, he shares his toys and they play together,” says Hita. “He’s very giving and it’s admirable.”
At the end of the day, what both Hita and Ayu want is to help other parents going through a similar journey realise that they are not alone, and that their children, whatever their special-needs requirements, are an inspiration and not a problem.
“To all parents of children with autism, embrace the journey, do not have self-pity, because your child needs you.”
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