When my son Alex was just three years old, a doctor I took him to for a garden-variety ailment became the first medical professional to suggest my only child was on the autism spectrum.
It was not the only suggestion she made. She made me feel that Alex’s condition was my fault. She said that fathers of a generation before me would sit down with their sons and do things that would aid the development of their offspring’s motor skills – activities such as carving soap, she said. She went on to elaborate how diligent these fathers would be towards the upbringing of their children, adding that modern parents did not engage their children that way anymore – thereby suggesting that my style of parenting, whatever she imagined it was, caused his autism.
The advent – years before Alex’s birth – of liquid soap could not cleanse me of the guilt I felt that afternoon, even though I already had a fair understanding of what autism was. I left the clinic with medication for Alex’s runny nose and a strong foreboding that raising him was going to be a long and arduous task.
My mother, who took care of Alex for much of his early life, had previously noticed that he would line his toys up and was always fascinated with spinning objects – signs that a child may have autism. And although he uttered his first words very early on and could already read by the time he was two years old, he appeared to have a habit of repeating a single word or sentence, said by another person, over and over again in another symptom of a child on the autism spectrum – echolalia.
“I need to tell you something, Ivan,” she said one day. “Alex could be autistic.”
The words were a knife through my heart.
“I know,” I said, interrupting her in mid-sentence as she explained her reasons for thinking so. “I’ve seen him doing those things, too. Let’s wait and see,” I added. Which might have turned out to be the worst decision I made as Alex’s father, for early intervention would be vital to an autistic child’s development.
Fortunately, that wait was cut short – by another visit to a doctor. This one was a lot more sympathetic and asked if I had sent Alex for an evaluation. I would find out that she, too, had an autistic son. My wife and I decided immediately to rectify the omission, setting a date to visit a child psychologist.
For me, there were just two lines that stuck out after reading the seven-page report: Alex has autism. He is probably highly intelligent.
Bad news, tampered with a glimmer of hope.
The second doctor, the one who had advised me to send Alex for a test to check if he was indeed autistic, remains Alex’s doctor till today.
“You were very defensive when I first met you,” she said, years after our first meeting. I explained to her that the last doctor Alex saw before her thought I was the cause of Alex’s condition, and she shook her head in dismay.
By the time Alex was six, he could identify every flag of all the sovereign nations in the world and spell the names of each of their administrative capitals without the assistance of Google or Spellcheck. Today, he is a student of Pathlight School, an excellent school for children with autism.
Yet he would struggle to communicate like a child his age, apart from basic things like asking for food and water, or going to the gents.
Over the years, he has had his fair share of meltdowns, triggered mostly by a sensory overload from loud noises such as car horns, his aversion to anyone talking on a mobile phone, or the occasional disruption to a rigid schedule.
It was easy when he was little – I could lift him up quickly and take him to a quiet spot to calm him down. But by the time he was eight years old, I found it impossible to do it without damage to my back.
So when he had one of his monumental meltdowns after that – trying to bang his head on the table or wall before throwing himself to the floor in a shopping mall – I had to talk to him to calm him down, holding him so he did not injure himself.
The looks we got from the crowd were demoralising and devastating. Some stared at Alex in horror, then at me, as if unable to decide whether it was a bad child or a bad father. A few glanced awkwardly in our direction, probably feeling pity, before walking away, while the rest regarded us with a mix of contempt and confusion.
I finally managed to calm him down sufficiently for him to walk to the car, by which time I was drained – both emotionally and physically – from the episode. I could only imagine how Alex must have felt.
Alex will be 13 years old in May, which will also mark the 10th year since he was diagnosed with autism spectrum disorder. His meltdowns are less frequent now, not because his condition is improving (there is no cure for autism), but because we have become better at managing the triggers. We set a routine for him. We make sure he isn’t thirsty or hungry. We avoid crowded places. If we need to go to a place that we think would be crowded and noisy, we would make sure we have noise-reducing headphones with us, and that there is enough activity to keep him engaged.
On my outings with him, I talk to him all the time, even though I don’t particularly like the sound of my own voice. I do it because I need to keep him focused and amused.
However, despite our best efforts, the occasional meltdown still happens, and it is a frightening sight to those unfamiliar with such a situation. Because Alex is already 1.75m in height (just a tad shy of my 1.83m) and weighs 85kg – about 25kg heavier than me.
Just recently, our helper left for a holiday to spend Christmas and the New Year with her family in the Philippines, and the next day, my wife had to go overseas on a business trip.
That unfamiliar situation triggered a meltdown from Alex at a food court. I managed to stop him from banging his head against the table, but he threw himself to the floor. I crouched next to him, held him tight, and spoke gently but firmly to him: telling him it was OK, reminding him papa was here, and assuring him that papa loves him, no matter what.
No part of my removing Alex to a quiet place will look right. When he’s on the ground screaming his head off and I’m trying to calm him down, I could look like I’m not firm enough with him. When I attempt to lift him up, I could look like an abusive parent. But I’d still rather be looked upon for being a bad parent than for Alex to be looked upon as a bad child. If anyone is to be blamed for causing a scene, it would be me – for failing to manage the triggers.
So when a video emerged on Boxing Day of a boy with Autism Spectrum Disorder in Malaysia going through a meltdown and his father pinning him down to the floor to restrain him, my heart broke.
The boy, Adam, is described as a “sweet boy”, and you can witness that in a video taken after he has calmed down. He had a meltdown because he was hungry.
As a parent of a child on the autism spectrum, it is heartening to see that the video has received so much attention: It has had more than 3.5 million views and has been shared over 37,000 times. My hope is that people will be more understanding of the condition, and bear with people like Adam and Alex – and their parents – when they have a meltdown.
You can probably tell that a person is autistic if he is socially awkward, has problems communicating, and struggles to or avoids making eye contact while in conversation with you. And that is if you have an opportunity to meet such a person in a social situation. They are not aloof, they mean you no harm, and quite often, they are full of love. They are just hardwired differently.
However, for most people, their first contact with autism is when they witness a meltdown. And it is seldom ever pretty.
I hope you’ll understand. Because even today, I am trying my best to understand Alex.