Effendy (left) and Khairy (Photo: SooPhye)
“I hear babies cry, I watch them grow. They’ll learn much more than I’ll ever know.” Louis ‘Satchmo’ Armstrong might have throatily sung those poignant words in What a Wonderful World in 1959, but for parents of neurodiverse children, the sentences carry the emotional load of a lifetime of struggle, challenges … and pure love.
“I was in denial for quite some time,” says Khairy Jamaluddin, 48. A familiar face to all Malaysians, who often refer to him succinctly as “KJ”, the Oxford-educated politician and former health minister now busies himself with radio presenting as well as being one-half of the hit podcast Keluar Sekejap, which covers local politics and current affairs, alongside Shahril Hamdan.
Married to Nori Abdullah, daughter of Malaysia’s fifth prime minister, Tun Abdullah Ahmad Badawi, the couple have three boys — Jibreil Ali (17), Timor Abdullah (16) and Raif Averroes (9) — and are open about the fact that their middle child is special, in every sense of the word. “Yes, I was in denial initially, but you have to learn to embrace what you are confronted with because, behind the diagnosis is your kid, a person. As parents, you need to figure out how to help [him] achieve his full potential; and if that requires changing your expectations completely, then that is what you must do.”
Timor has autism spectrum disorder (ASD) and what riles Khairy is how “people always want to fix the kid” rather than accept autism as part of the neurodiversity that comprises the wonderful and varied human race. “There is much more awareness [about the condition] in developed countries, not to mention resources. There is support and, as a result, people [abroad] are much more accommodating. That is key. In Malaysia, when it comes to neurodiversity, we are still talking about behavioural interventions, that we mould the autistic person into society’s expectations of them rather than accommodating them in our world and we making the changes.”
It is a thought his friend Effendy Shahul Hamid, 51, vehemently agrees with. Many know the veteran banker as CEO of CIMB’s group consumer and digital banking. He is admired for his smarts, business acumen and no-nonsense approach, but few are aware that he has a soft side, particularly when it comes to children and their causes. Many key charity do’s would see the father of Ryan (15) and twins Sebastian and Patience (10) in wholehearted attendance, schedule permitting.
Being the change
The two fathers struck up a friendship after discovering their boys attended the same school. “Ryan is autistic as well and just about a year younger than Timor,” says Effendy. “I agree with what KJ said earlier but, adding to that, more can always be done when it comes to inclusivity. I like to give an example. If you have someone who is four feet tall standing behind a brick wall and trying to watch a football game, you can do one of two things — give him a ladder or, better yet, don’t use bricks for walls. Why not use a mesh fence instead so everyone can watch the match [without needing help or intervention]? Inclusion needs to be more than just accommodation. It has to take into account how things are designed so it’s as fair a playing field as possible … for everyone.”
This is certainly something to consider as up to 20% of the global population reportedly show signs of being neurodivergent, although the majority remain undiagnosed. It is also important to remember that neurodivergence is not necessarily a disability but rather the brain just working differently.
Both men are vocal on what more can and should be done. Corporate Malaysia, CIMB included, has already taken steps to embrace diversity, equity and inclusion (DEI) policies, encompassing but not limited to welcoming neurodiverse people into the workforce. Then there is the stellar example of Gamuda Bhd, whose Enabling Academy has its very own Employment Transition Programme that helps individuals with autism develop the necessary soft skills and practical abilities to secure and retain gainful employment.
For the betterment of all
The built environment is also of great importance. “There are years and years of guidelines and best practices when it comes to physical disability,” says Khairy. “From ramps to toilets, that has been taken care of. But that same extension of thought and effort has not been brought into the mainstream for the neurodiverse.”
For those unaware, the sensory and nervous systems are highly intertwined and even more so for people on the spectrum. To a neurodiverse individual, a place with stimuli such as strobe lights, flashing bulbs or even certain smells and sounds can provoke immediate and intense reactions.
“Let me give you an example so that it’s clearer,” Khairy volunteers. “Our family was travelling through London’s Heathrow Airport. We were already late and anxious. And I can tell you that every single parent of an autistic child is envisioning nightmare scenarios of him having meltdowns at this point. It’s the biggest anxiety parents of autistic kids have. You can’t control the sensory input they are getting on the way to and at the airport. Other passengers are also stressed. And because you can’t ‘see’ autism, you would not know how to be more patient or accommodating.”
Travellers entering or exiting Malaysia might have seen posters advertising butterfly lanyards in KLIA. “In Heathrow, they use a sunflower lanyard. Wearing one enables airport staff to identify you have a hidden disability without needing to declare it,” Khairy explains.
“Thankfully, we pre-registered and had a lanyard ready. The beauty of this is everyone is trained to recognise and do something about situations instantly! We were in this snaking long security line, getting nervous, when, suddenly, this big burly security guy — I mean, you know, the last person you’d stereotypically expect to show softness or compassion — approached us and said, ‘Excuse me, please come forward.’ And he took good care of us throughout, and that was a wonderful experience. Heathrow is particularly good as are all the Australian airports.” (Editor’s note: Both KLIA 1 and 2 offer the Butterfly Effect, a set of facilities and services that specifically cater to neurodiverse passengers, including a Calm Room and interactive sensory walls.)
Effendy says, “Based on my experience, I can tell you most people, and most Malaysians, are very compassionate. They want to help but, when it comes to autism, most people don’t know how. At CIMB, we have neurodiverse people in the workforce. The main challenge we found usually lay not with the candidate, but more about training the managers and having people understand what autism is.
"For example, one did not like overly bright lights. So, he would eat lunch in a darkened meeting room. It took a while for the managers to understand that this worked for him. And guess what? Soon, he wasn’t the only one eating lunch in the dark anymore. It should not have to be doing what is traditionally done anymore, but about embracing difference. Eh, I also don’t mind eating in the dark myself! It’s soothing,” he laughs.
The way forward
“We need to see how certain sensory experiences can be muted too,” Khairy continues. “Let’s face it. Many common areas in buildings and offices are not built for people with sensory issues. If you are really thoughtful, you would be thinking about more accessible exits for people who get easily overwhelmed and can’t regulate themselves. This is especially true for those with autism.” He commends
Sunway Putra Mall, hailed as the country’s first autism-friendly shopping centre. Its Calm Rooms feature fibre-optics and warm, versus bright, lights. There are weighted blankets, art and reading corners, throw pillows, bean bags and even essential oil diffusers.
Both he and Effendy go on to praise changes in the work culture where it is now possible (and permissible) to get some rest or decompress as silent spaces, privacy pods and other ergonomic advancements become more commonplace. “Research has shown it’s good to have areas to disengage, to ensure there’s no sensory overload,” Khairy says. “I’d love to check in there myself if I’m particularly stressed. What more for someone who is autistic and wouldn’t be able to tell you [how he’s feeling].”
He cites an incident during his time as health minister when the Covid-19 vaccination programme was being rolled out. “We quickly realised it was extremely daunting for parents of autistic children.
I remember having to help physically hold down one child. It took about four of us in the end, including his dad. I then instructed some of the PPVs (Pusat Pemberian Vaksin, or Vaccination Centres) to have calm rooms and we developed specific medical guidelines on vaccinating people with mental disabilities, which Singapore then asked from us. Some others couldn’t or didn’t want to get out of the car. So, we had a drive-through PPV and jabbed them on the shoulder, through the window.”
Doing more, doing right
“When you bring up the topic [of autism], Malaysians are generally very receptive,” Effendy assures. “In my position in the corporate sector, I make sure to openly talk about it, sometimes even going out of my way to say more than I need to say. We bask in the fact that Malaysia is this diverse nation, diverse in terms of ethnicity, religion, geography and so on. So, we really need to make it known, then, that neurodiversity is just another element of diversity, an extension of it.”
He pauses for a while before adding, “I can tell you, when my good friends and I go out for dinner, they know exactly what kind of restaurant Ryan likes and can go to. They will not complain if we all have to go to the same spot three or four times in a row so he can come along too. I am not saying anyone who doesn’t do that is bad, not at all. I am just showing [the difference it makes to everyone] when there is an extra level of care and understanding.”
Khairy recalls a recent incident. “There was a father and child having dinner. And, clearly, his son was one of ‘our guys’. He was particularly loud and having trouble regulating himself. I noticed a nearby table giving negative looks so I took it upon myself, assuming they knew who I was, to go over and explain how I thought the boy was autistic. And you know what? They were okay once informed. So, yeah, we all gotta develop a thick skin and shout it out … when the time calls for it, of course. And this is something you have to do — for yourself, for your family. Sometimes, other people are in the same situation but maybe they aren’t ready to speak out.
So, you speak up for them!”
Effendy nods in agreement, saying, “I’m already one of those guys who will stand up, talk and shout as loud as I can about things I feel strongly about. Because if you don’t, who’s going to hear it? Given how increasing numbers of the population have some form of neurodivergence, compassion is worth fighting for. The hardest thing is seeing your kid have a meltdown and not knowing how to comfort him. So, [my stance] is always about taking care of the child first. And we have to remember: What makes us feel good isn’t necessarily going to make the child feel good. So, to all the parents out there having a tough day, just take one step back. Do what is going to make the kid — not you — happy.”
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Make that change
Public service announcements (PSAs) are also something these fathers would like to see more of. “Autism awareness has gone up, especially in urban areas, because more parents are willing to talk about it,” Khairy points out. “However, I’d like to see PSAs that are more raw. Malaysians need to be able to easily identify someone whom they think is neurodiverse. We need posters telling you what to do or say when you encounter a family whose child is having a meltdown. These are things that still make people uncomfortable.”
Asked what their posters would read, if they could make one, Khairy immediately replies how his would not be in the form of a poster. “I’ve not had the time to do it before — well, maybe I do now — but I’ve always wanted to produce a short video where you take the perspective of an autistic person. By the way, would The Edge like to fund this project?” he asks, laughing.
Effendy’s idea of a PSA is equally creative. “I think mine would be a T-shirt,” he smiles. “And it would read: ‘He’s not a brat’ or ‘He’s not naughty. He has autism.’ I’ve seen those tees before and the first part of spreading awareness is to ensure it is not stigmatised.”
On favourite ways to bond with their neurodiverse sons, both agree swimming is a preferred activity, citing near-immediate results in inducing calm since it is a form of sensory deprivation, as water blunts the senses while forcing focus and encouraging internal retreat. “It’s never about the big wins either,” Khairy notes. “It’s always the small wins because those are the moments when we are experiencing life together. It could be enjoying a bowl of soba or a swim or … an uneventful flight.”
Despite the conversation taking on a morbid undertone, they are very frank about how everyone in the family needs to be collectively responsible for each other’s well-being — a fact they tirelessly instil. “Yeah, it’s a dark topic but I’ve already told Jib, my eldest, that when I’m gone, ‘[helping care for Timor] is on you, bro’. I’ve tried telling Raif, too, but being barely 10, he’s not on the bro level yet,” Khairy chuckles.
“Ryan is the eldest and we are trying to impart to the twins that family is also their responsibility,” says Effendy. “While I’m trying not to overburden them as they are still young, our conversations at home are very open. They have started advocating for their brother and look out for him whenever new kids check into the neighbourhood. We take a lot of things for granted sometimes, but when you have children on the spectrum, nothing goes unnoticed. Every little thing is a big win. And it humbles you. My father himself told me straight up how my son made me a better person. He said I have more patience, more compassion now. And it’s these things that make you stop and think.”
As the devoted dads wrap up the chat and make their way home to their families, two truths stand out: First, it is kindness, not autism, that is contagious. Second, neurodivergence is not a disability, but just a different ability in terms of thinking, seeing, doing and being part of the big wide world. And, with a little more kindness, patience and understanding, what a wonderful world it can be. As Louis Armstrong himself sings it, “Oh, yeah”.
This article first appeared on Dec 2, 2024 in The Edge Malaysia.
