This is potentially the “mother” of all autism questions!
And were you to ask me if there was another more frightening one for a parent, I honestly can’t think of it right now.
All I know is that this question never crossed my mind before. Not until I came across it recently in an account by a Singaporean mother who struggled with her severely-autistic son.
The account of this single mother, Choo Kah Ying, and her teen son Sebastien can be found in a memoir she published in 2019 called “Where Does My Autistic Son Belong? — An Extraordinary Journey To Build A Better Future“. An experienced copy writer and editor, Kah Ying has also published a few related books prior to this one.
(Her story has also appeared in other platforms like Women’s Weekly and Asia One.)
Living with severe autism
All those years Kah Ying journeyed with Sebastien, since his autism diagnosis at 18 months, were filled with the sort of drama no family would want, and every family would wish to avoid.
From difficult home-schooling episodes, to zig-zagging dangerously in public malls and underground stations. Not forgetting Sebastien’s disappearance that’s the stuff of every parent’s nightmare.
It’s safe to say that this mother has seen it all!
And when I tell you that she ended up sending him away at 18 years of age, to a special school in Bali for children and young adults with mental and physical disabilities, you’ll no doubt be drawing some pretty bleak conclusions about her cruelty and neglect.
You see, from the time Sebastien was physically able to, Kah Ying lived each day with the dreaded prospect that she could be beaten to death by him! If you’ve read her account, you would know that this is no mean statement to make.
That’s because the nature of Sebastian’s form of autism made it extremely hard for him to manage his temper. He would frequently struggle to regulate his temperament, and end up lashing at the very person who loves him the most in this world – his mom.
As painful as the hitting and beating Kah Ying endured were, it was clear that what was far more painful was the unimaginable decision she had to make to send him away.
Unimaginable, because I simply cannot see myself making a similar decision for C some day!
Mild or severe, the question’s still clear
What would you think if, after being alive for the longest time, you woke up one day and realised that you actually had a serious disability all along?
A disability that made you stick out like a sore thumb from the rest of humanity. From people who would forever look at you with either astonishment, or mockery, or disdain, or unbridled fear and suspicion.
When I look at my son and how he behaves and interacts day after day, I’ve often wondered if he knows he’s different.
By that I don’t mean the way he clearly knows that blue isn’t red and red isn’t blue. Or that he wears a different school uniform and goes to a different school from his older brother.
I mean the day he realises he might never fully interact with the rest of the world, with its mixed-bag of subtle and multiple social communication cues. Seemingly innocuous cues like the lifting of an eyebrow, a clearing of the throat or crossing of one’s arm over the torso.
For Kah Ying, this came to light almost by way of an after thought.
They were dining at a friend’s place while holidaying in Paris.
At the table where they were seated, there was a lot of friendly conversation going on among the hosts and guests. Unfortunately, it was all done in French, which Sebastien didn’t understand, and Kah Ying struggled to keep up with due to her limited command of the language.
After clearing his plate, Sebastien did not leave the table. Instead he started to fidget and let out low grunts that gradually became more audible. Assuming he was getting bored and restless, Kah Ying suggested that he retreat to the guest room to work on his colouring (his favourite activity).
At first he did not respond, but continued to linger where he was. That led to some awkward silence as everyone at the table waited to see what Sebastien would do next.
After some moments, he finally pushed back his chair with large dramatic movements and marched off to his room.
It was only much later that it dawned on Kah Ying how rude everyone at dinner must have seemed to her son, speaking jovially in a foreign tongue. Sebastien must have felt excluded, though everyone knew he would have hardly spoken or socialised even if they spoke in English.
To confirm her hypothesis, she decided to ask him if he had been upset and angry that night because everyone spoke in French around the dinner table.
His reply came swift and immediate: “Yes!” His body was now visibly more relaxed, as though all the tension of that night had kept his body on a tightrope up to this moment.
Spurred on by the exchange, Kah Ying blurted out the next question almost without thinking: “Did you feel upset because you were autistic?”
Lifting his head up and tilting his face towards her, he loudly proclaimed: “YES!”
A parent’s anguish
That answer, she wrote, plunged Kah Ying into a state of helplessness and despair.
And me right along with her.
Reading this far into her account, I felt a sudden upswell of tears springing from somewhere deep inside me. I had to quickly close the book, and steel myself from letting the emotions of the moment overwhelm.
Just like Kah Ying, I found myself wondering in fear: Will C come crying to me one day when he realises that his autism is immutable? That his exile to this “land of autism” might be eternal?!
How will I reply? What will I say?
For all the purported bravado and sacrifice I seemingly made to leave my work and stay home for him (and his brother), nothing I have at this moment (and possibly the next) will equip me with an answer if ever C posed me this mother of all questions!
But at the very least, thanks to Kah Ying’s account, I’ve come closer to the periphery of what his grief must feel like; what the grief of all special needs people must feel like.
The grief that is what Kah Ying calls “the hurt and sting” of being different in this society; for having something that’s not of their own making.
I pray C can stay oblivious like he is now, so that I may never have to confront this question.
But if that time does come, I suspect that just about all I can do is sit and hug him tight, tell him how much he’s loved, and grief right alongside with him.
Then afterwards, we will stand up and continue on this raw and unfinished journey of autism and being.
For as long as we both shall live.