The Story of Our Autism

“Honk Honk”, the car comes screeching to a halt. Right in front, was a 14 year old boy who tumbles to the ground. He was unscathed as he had for umpteen times since young. All Ellen can do is quickly come to her son’s side, pick him up and apologise to the driver.. once more. 

Zilex is a 14 year old boy, with Autism. He has a high amount of energy, with a tendency to run off. While he was manage-able when he was much younger, now at the almost-grown up age of 14, he exhibits physical strength and stamina that far out stretch his ageing and exhausting parents. He is non-verbal, though able to point to words and picture cards.  He has huge difficulty leaving the site of the activity to go home. His “runner” tendency kicks in so often that Ellen (mother) often has to rely on neighbours or even call the police to assist. She is absolutely at wits end with how to better take care and ensure his safety.

These are the tip of the iceberg of the stories of Ellen and her family’s challenges and struggles. 

They have another boy, Jason, 12 years old. Jason also has autism. Jason fell very sick at 6 years old, with high fever, seizure, lost of urinal control and weight loss. He is on full-time diaper. Jason has picking skin and he will pick himself till it bleeds with a big patch mark.

Zilex is difficult to get off public transport, due to transitional difficulties. Travelling from point to point itself can be quite a challenge for Ellen and her husband, Pierre. 

The boys’ father and Ellen’s hubby, Pierre, is a mellow man who is the sole breadwinner of the family. He works at a factory as a technician for the past 20 years and earns a humble income. He suffered a cardiac heart issue two years ago that required surgery. He is currently enduring a weak heart and body that prevents him from keeping up with his high energy teenage boys.

Ellen and Pierre are from Malaysia, and now in Singapore. They do not have relatives living in Singapore. They manage their challenges almost single-handedly by themselves with a little assistance from various institutes. 

Their financial situation together with the cost of raising two children with special needs overloads their financial capacity until they have to be almost fully subsidised for every therapy and cost related to their boys. The list of organisation that they have attempt to reach out to stretches beyond imagination.

The situation of having to raise two children with autism at home, also creates a challenge that is almost impossible to be resolved by therapy alone. At any one point Ellen has to watch over two of them for their safety and energy needs. It gives her almost no time to do the homework that every therapist will task parents to execute at home for their child with Autism. She is absolutely tied up. Pierre has worked most of the time, to keep afloat the basic income to sustain the family daily expenses.

Ellen has almost exhausted all her channels of enquiring for help and assistance from official organisations in Singapore. Many organisations (due to their limited resources and non-profit KPI-s) could only give advice, pockets of therapies or some care-giver support. It is really kind and nice of them,  absolutely no doubt. But it couldn’t truly help her situation. They are all pretty much a band aid to an internal wound. 

She even approaches her own district MP (Member of Parliament) and PA (Community Centre), to much avail, as they have no idea how to help. They only know the structured and protocol way of doing things. They are really not listening to their true needs.

Desperate for help and growing through the evolution of her children, Ellen and Pierre, have already put down their ego and need for privacy. Ellen would tell me that she has now learnt that she needs to shout for “HELP” in order for the public to respond, as many people would freeze and be wondering if they should step up to help her when Zilex or Jason acts up. Through our 3-hour conversation, it was clear Ellen was very clear right now what she needs help with, but she is absolutely tied up and has no resources or energy reserve to gather the help she needs. 

“I need volunteers and people who are willing to stand in to watch over one of my boys (either at home or outside), while I can work on the other with the knowledge and therapy homework given to me. It would be better if they can help me when and where I need.”, said Ellen.

That is what Ellen and the boys need now. 

Of course there are many other things and resources that they would need help and support with, but the above is a priority as it concerns the boys. It concerns Jason and Zilex, whom both mum and dad love so much. They love them beyond their own selves, and that is clear.

Pierre shared with me about the father who killed both his special needs children last year, and said many families out there are struggling in such light. The notion or thought of it may be new to many of us, but not those families who are undergoing it. But their will and strength absolutely goes beyond many of our imaginations. Seeing Ellen and Pierre speak and share about their struggle was like witnessing  Superman and Batman trying to save the world from almost imminent doom. It is a real life superhero story. 

Zilex and Jason, if without the help, support and growth required, will one day be admitted to the Institute of Mental Health because of their physical age and inability of their family to ensure safety for them and others. Ellen and Pierre will definitely fight till the very end to prevent that from happening, for when that day comes, it is almost like sending their children to the abyss of no return.

Helping Ellen and Pierre, and in the process engaging with Zilex and Jason, shouldn’t be about us being in a privileged position being able to help others. It should be the expression of being human. It is these moments that remind us to truly care, love and be kind to another human being no matter the condition. It is why we live together and not in isolation. It is these moments that exemplify our National Consciousness.

Jason and Zilex will show us that they are not the problem. They are the ones who will show us how to be a better human in this seemingly divided and cruel world. It is not the big corporate or national success that truly defines us, but how we embrace and support each other in times like this.

Written by: Darren Quek


Note as of: The names have been witheld, as the family wants to tell their story but not their identity, which we fully respect.


For those who wish to help them financially or in any other ways, please email to wired.darrenquek@gmail.com with your

Your Name
Your Whatsapp no.
The resource or help you wish to offer your support with.

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