Growing up with autism.

 

What is the world like to Yan Ling (11) and Yan Yun (8)? Or, how do we see them as members of public? 

They were both diagnosed with Autism Spectrum Disorder (“ASD”) at 4 and 3 respectively. Their father, Edward, 45, said: “Autism is an invisible disability that not many people can see or understand.” 

Photojournalist Ong Wee Kiat followed and interviewed the family, and took some sobering pictures of their daily lives from travelling in a train and playing by the beach, to taking a stroll along a canal. 

The pictures are screenshots of how this invisibility plays out. At times, they invited strangers’ stares because ASD manifest itself in ways many cannot fully understand. 

“ASDs are a range of developmental disorder characterised by difficulties in socialisation and communication, and restricted or repetitive patterns of behaviours and interests. It is estimated that one out of 150 children today has some form of ASD.”

The stats speaks for itself. “Only 11 per of early intervention professionals polled in 2018 thought that Singapore is an inclusive society, according to a survey commissioned by philanthropic organisation Lien Foundation.”

Recently, Edward had to quit his job as an auditor to become a private-hire car driver so that he could have more time with his two girls. He said: “The learning for every autistic individual is different. For my girls, you cannot teach them from chapter one to 10. You sometimes have to start from three, then go to 10, and come back to one.”

Currently, only the girls’ mother, Mdm Soh, is working as a senior accountant. When she has the time, she will spend with them, taking them out for a stroll and play. 

However, bringing them out in public can be a social challenge. Yan Ling would “run up and down the full length of the train platform” and Yan Yun would “walk from one end to the other, even when it is crowded, stopping occasionally to play with the grab poles along the way.”

Edward mused that the greatest lesson for him is about learning to adapt. He said: “It’s my interest versus the children’s interest. Their interest is long term. After I die, they will struggle and not be able to survive if we do not impart to them the necessary life skills.”

Lesson...?

You can’t not reflect about what you have at the present when you read about such story. Most of us are reasonably realistic about what we have. We know there is no such thing as a perfect family. Our relationships are all tested by the circumstances we face. Each family go through their own trials in their own way.

Somehow, you can’t help but think about the lives that have gone before you and the lives that will come after you, and you wonder, how have and will they overcome? 

Given the limited time we have on earth, the struggle to make or carve out a living is the same for everybody. Within that short span of our mortal consciousness, we want to make the most of our life here. 

But how do we do that? How do we make the most of our life here? How do you keep your chin up, stay positive, when everywhere you turn is grim and dark, even hopeless, especially during this Covid-infection period? 

Let me share with you a client I know who is unusually positive even in the midst of an accident that has left her husband bedridden for life. Despite his permanent incapacity, everytime she comes to my office, she will be smiling. She will tell me about her kids, about how she had worked with social workers and doctors to care for her husband, and how she plans to remain strong for the family. 

Of course, I believe there are days when she shed silent tears, questioned her life, and felt completely helpless. But, people like her never stay that way for long. 

We are humans after all. We do breakdown. In our brokenness, we naturally experience rage, pain and sorrow. We cry out for justice. We beat our chest for hope. And we go on our knees amid the storm. 

But over time, time itself beckons us to move forward. Like it or not, life has to progress by seasons, that is, from a season of tears to a season of healing, from a season of hope to a season of overcoming, and from a season of growth to a season of joy. 

We must therefore allow time to be the handmaiden of the seasons that move us forward. And what comes out of each season as we progress to reclaim our healing is the gradual affirmation of the post-traumatic growth that defines our humanity. 

The reality is, after a season of pain and sorrow, comes a season of recovery, and what sabotages our progress is a spirit of self-nurtured cynicism. Once we allow that to take root, we become the author of our own victimhood, drawing security from being a victim.

So let me end with the parenthood of Edward and Mdm Soh and the positive outlook of my client. They have shown me a side of life that is not only real and painful but enduring and empowering. Their lives have also shown me a side of humanity that is prepared to confront and overcome with hope because they never allowed the worst in life to rob them of the best it has to offer.