"WE'LL have to play it by ear,' the message read. "Depends on my son. Once he's okay, I'll text you."
Securing an interview with Iman Wan Tuck Meng had been a challenge, but it wasn't hard to see why. At 58, Iman has dedicated his life to raising Adam, his 23-year-old non-verbal son on the autism spectrum.
Every hour of Iman's day is tethered to Adam's needs. His time isn't his own, and scheduling a conversation required navigating the unpredictable rhythms of Adam's world.
I first got to know Adam and his family through their social media page, Adam's Autism Family. The page offers a glimpse into Adam's life and the day-to-day experiences of his family, highlighting not only how he navigates life, but also the challenges they face together. Over time, the page grew in popularity, resonating with followers who were drawn to their heartfelt stories.
Through candid Instagram posts, a father's journey with his autistic son unfolds, capturing both challenges and small victories that highlight their profound bond.
Many people resonate with Iman's struggles as a parent, finding in his story a reflection of their own challenges in raising a special needs child.
While Iman is undoubtedly his son's fiercest advocate, stepping into the role of an "ambassador" comes with its own hurdles.
Even simple activities, such as attending events or social outings, require careful preparation, from managing potential triggers to ensuring Adam's comfort, leaving little room for spontaneity or external obligations. For Iman, advocacy often means balancing visibility with the realities of caregiving — a delicate and unrelenting dance.
"I can't meet you in person," he wrote to me, and I understood why. Still, not everyone does.
"Orang kata saya anti-social, sombong, demand sangat. Tak support event charity, asyik menolak jemputan untuk bagi talk dan sebagainya… Mungkin mereka tak faham keadaan kami yang sebenar… (People say I'm anti-social, arrogant, too demanding. That I don't support charity events, always turning down invitations to give talks and so on... Maybe they don't understand our real situation...)" wrote Iman on one Instagram post.
But it's clear that his perceived aloofness isn't born of arrogance or indifference. Instead, it stems from the demands of his daily life as a full-time caregiver to Adam, whose needs often make it impossible for Iman to commit to events or public appearances.
Behind the scenes, his reality is far from what people might assume. His refusal to attend events isn't about choice — it's about prioritising his son, whose well-being requires constant attention and care. Iman's words reveal the loneliness and misunderstanding many caregivers face, a reality hidden behind social media snapshots and public perceptions.
It's also understandable why he doesn't want to talk solely about Adam. "We've done so many stories," he told me matter-of-factly, adding: "I want to talk about the true struggles of parents, not just about the child or autism. Are you okay with that?"
While he may not be able to attend events or share these experiences in person, it's clear that Iman remains deeply committed to advocacy. As much as he can, he strives to foster understanding and support for the often-overlooked struggles faced by caregivers.
"It can get lonely," he acknowledges when we finally settle down for a Zoom call. I catch sight of Adam lying quietly on a couch in the background. "Adam is my second-born," Iman explains, adding: "I have two daughters as well — my eldest is 25, and my youngest is 13."
EARLY YEARS
Iman once had a thriving career as a marketing director with a recording label. "I relished my work," he shares half-wistfully. A songwriter and composer, he worked with many top artistes, including Datuk Siti Nurhaliza, Amy Mastura and Dayang Nurfaezah.
Beyond the music industry, Iman also made his mark in television, contributing to shows like Akademi Fantasia during the early days of reality TV in Malaysia. "That was my world," he says simply.
While he enjoyed a flourishing career, things took a different turn at home. He and his wife noticed that their young son, Adam, lacked eye contact and exhibited other concerning behaviours.
Seeking professional guidance, they visited the Child Development Centre at Hospital Canselor Tuanku Muhriz UKM, where Adam was diagnosed with autism. A subsequent evaluation revealed that he also had attention deficit hyperactivity disorder (ADHD).
Reflecting on that time, Iman shares: "You have to imagine that this was like 20 years ago; you could hardly find information about autism." The lack of accessible information made it challenging for Iman and his wife to fully grasp the implications of the diagnosis. In Malaysia, awareness and understanding of autism were limited during the early 2000s, with few resources available for parents seeking guidance.
On the early days following Adam's diagnosis, Iman recalls telling his wife that Adam's condition would "go away". For at least two years, they took no specific action, hoping the challenges would resolve on their own.
As time went on, Adam still couldn't speak. "We always thought that he'd eventually talk," Iman shares, adding: "But by the age of 7 or 8, we had to accept that he wasn't going to. It got me thinking and worrying about what we were to do with our boy."
Concerned about Adam's development, Iman and his wife began researching early childhood intervention options. However, choices were limited at the time, and many available programmes were prohibitively expensive. "The more affordable ones were nothing more than daycare instead of proper therapy, you know?" he sighs.
Iman and his wife learnt about Applied Behaviour Analysis (ABA) therapy, a widely recognised intervention for children with autism. However, the high costs associated with ABA therapy back then made it inaccessible for their family at the time.
Determined to provide Adam with the best possible education, they enrolled him in a private school that offered specialised support. "We paid an arm and a leg for it," Iman reveals, "but the cost became too much for us to continue."
This experience highlights the financial challenges many families face when seeking quality education and therapy for children with special needs in Malaysia. While some private institutions offer tailored programmes, the expenses can be prohibitive, leading families to make difficult decisions about their children's care and education.
GROWING UP PAINS
Adam attended three different schools, each transition presenting significant challenges. As he entered his pre-teen years, Adam exhibited increased rebelliousness and aggression, sometimes resulting in harm to his teachers. "We had to take him out for his safety and the teachers'," Iman explains.
Aggressive behaviours in autistic children can arise from various factors, including sensory sensitivities, communication difficulties and environmental stressors. These challenges often lead to significant stress for parents and caregivers.
He emphasises: "There's not enough emphasis on caregivers when you talk about autism. Parents are stressed out, and it's not easy going through life. On top of that, you have to take care of a challenging child, which makes everything super stressful."
Initially, Iman's wife bore the primary responsibility of caring for Adam while Iman focused on his career. However, as Adam's needs intensified and his wife's stress levels rose, it became evident that Iman needed to adjust his commitments to support his family more effectively. "My wife needed me. So, when I had to stay at home more often, it affected my work," he confesses.
Balancing caregiving responsibilities with career demands became increasingly challenging, leading to financial strain.
"There's so much to handle when you're bringing up a child on the spectrum. Raising a child like that requires a lot of money," Iman shares. "When a family is struggling financially, it becomes a stressor to provide the best for their child. Everything is expensive, from therapies to proper food."
The father-of-three continues: "Imagine a parent who has to work to make ends meet, and then they have to come back and take care of the child. They can only afford daycare, which often lacks the specialised support their child needs. So, what happens to the child's future?"
Recognising the escalating demands of caring for Adam and the toll it was taking on his wife, Iman made the difficult decision to leave his job. He became Adam's primary caregiver, prioritising his son's needs and his family's well-being over professional aspirations. "It wasn't an easy decision," he admits. "I had to give up my future, my plans and my dreams — for Adam."
LIFE AS A CAREGIVER
In the initial years after leaving his career to care for Adam, Iman faced significant challenges. "I thought I could go out and do business at first. But being with Adam meant staying with him 24/7," he recalls, adding: "I became a stay-at-home dad."
This drastic shift from his previous professional life led to immense frustration. "I became a miserable and angry guy. There was a phase where I blamed Adam and I resented him for putting me in this position," he admits.
Adam's erratic mood swings and volatile behaviour also presented significant challenges for Iman, necessitating his full attention and leading him to set aside other responsibilities.
"Taking care of a challenging autistic child affects you mentally and emotionally," he says quietly, adding: "I don't have a social life, I don't go out. So, it's just me and my son."
The young man's inability to speak makes it hard for him to express his needs, leading to frustration and sometimes aggressive behaviour. "I've become his punching bag," Iman says wryly, showing the scars on his hands from Adam's outbursts. "But I'm his dad, and frustrating or not, he's my responsibility. There's nothing I wouldn't do for him."
Iman's journey to accepting his role as Adam's caregiver is challenging, but his faith in God provides him the solace and strength he needs. He reflects: "I eventually found the good in struggles and that made me a better person in many ways. I've learnt to be more patient, more positive and appreciate the little wins."
Life isn't predictable, he acknowledges. "I run a few online businesses that I focus on when I have the time and when Adam is asleep. So, I'm very sleep deprived," he says, chuckling.
Iman's mornings begin between 6am and 7am, aiming to complete tasks before Adam wakes up. However, if Adam rises early, Iman shifts the focus to preparing him for the day.
Their routine varies, hinging on Adam's mood upon waking. "If he has a meltdown, it can take an hour or two to calm him before we can even settle for breakfast," Iman explains.
During meltdowns, Adam may become aggressive, breaking objects and hitting himself. Iman's priority is ensuring safety for both Adam and those around him. "It's not that he wants to be aggressive; he just has trouble regulating himself," he notes. Adam's inability to verbalise discomfort, such as illness or stomach pain, adds to the challenge. "Anything can trigger him and set him off," Iman confides.
There's no set routine, and he's always ready for the unexpected. "With Adam, no two days are the same!" he exclaims, chuckling.
Despite the unpredictability, Iman maintains a positive outlook. "Life isn't bad at all," he reflects, adding: "I think parents with children on the spectrum have to come to terms with the fact that life is what it is. We have to find the good in our struggles."
After a pause, he continues: "So my son is a gift to me, despite the challenges. He's made me a better person. I'm stronger, calmer, more confident, more grounded and at peace. What more can I ask for?"
The difficulties are real, but in the case of him and his son, love triumphs over everything. "It's been a rollercoaster ride," he admits, adding: "But it's all worth it in the end. God has given us the strength to accept our fate and to make the best of it."
In a heartfelt Instagram post, Iman reflects on his bond with Adam: "I spend so much time with Adam every day, from when he wakes until he sleeps. How I wish we could have conversations, and he could share what's on his mind," he writes.
Continuing, he adds: "Sometimes when I'm alone with him, I do tell him about my aspirations, hopes, my worries, and share some of my deepest thoughts. Stuff I do not even talk to my closest people about. I can with Adam. He's the best listener."
Iman's parting words echo the struggles of many parents raising children with special needs. "Adam has so much potential," he says softly. "It's just that I can't provide him with everything he needs. We simply don't have that privilege."