Week 4 of Serialization: Where Does My Autistic Son Belong? (Serialized): Chapter 4
In 2019, I published Where Does My Autistic Son Belong? that chronicles my journey of setting up a new life for Sebastien, my autistic son, after struggling with his aggression that erupted during his puberty and raged unabated for more than five years. This book has been very much part and parcel of A Mother’s Wish initiative (amotherswish.com.sg) to educate parents, educators, and the public about how we can interact with autistic individuals out of genuine empathy and respect. In the hope that as many people as possible will read it and learn from my parenting mistakes, I will be serializing this book on Medium on a weekly basis (click the link above).
And if you do want to purchase the book, please use this link: https://www.amotherswish.com.sg/product-page/crowdfunding-pledge-s-30.
Funds are still being raised for A Mother’s Wish that supports programs and families of autistic individuals and Sebastien’s future.
Please feel free to spread this message to others who may find this of value. Thank you very much.
CHAPTER 4
A LONE AUTISTIC TEEN
(June 2011 — September 2013)
I wished I could have said that my renunciation of physical force against Sebastien was a turning point in our story.
Well, that didn’t happen. If anything, now that I no longer “fought” back, things were back to Square 0. The only difference was that Sebastien’s threatening animalistic screams and occasional aggressive pounces that left scratches on my arms were no longer new and unexpected. Taking place about 2–3 times a week, they became the ammunition for Sebastien to create a new “world order” that was subject to his dictates. Once again, fear and anxiety became my companions in this universe.
As his mother, I was deeply torn at the time. On the one hand, I could recognise that Sebastien was merely being a rebellious teenager who was pushing the limits in flouting the rules of life I had taught him. Like any other teenager, his surge of recklessness and impulsivity seemed to be fuelled by his hormonal changes. After more than a decade of being told what to do, he wanted to assert his way of doing things. Many of us have likely done reckless and impulsive things during our adolescence.
On the other hand, because of Sebastien’s socio-emotional and learning deficits, he had absolutely no frame of reference in his experimentation. The outcome was thus far more bizarre than how it would have looked in the case of most teenagers. Sebastien’s teenage rebellion took on so many forms that describing them in detail would take far too many pages. Here is a small sampling of his challenging behaviour:
· Insisting on performing household chores his own way like starting a wash even when there were few articles of clothes in the washer;
· Dismantling household items like metallic doorstops;
· Washing remote controls of the air-conditioner until they no longer worked; pooping in small in quantities in his underwear throughout the day;
· Kneading at his penis all day long and wrapping the tip with price stickers or suspending rubber bands on it;
· Shaving off his eyebrows with a razor completely until he resembled a buddhist monk; and
· Racing onto the train platform to unleash a blood-curdling scream in competition with an empty train on the middle track that was moving off in the opposite direction.
Trying to stamp out all of Sebastien’s transgressions was akin to stopping the invasion of weeds. Before one area was under control, another would already be covered with them.
To combat his penis issue, I put up laminated posters featuring images of prison and caning in his room in the hope that he would be frightened into submission. I went to the library to get some answers about how to teach individuals with special needs about their sexuality. However, none of these instructional and prescriptive books written by credentialled professionals could tell me what do about an autistic teen who was perpetually kneading his penis to the point that he had only one arm available to perform any task. When I tried to follow their sensible advice of setting boundaries between the public space and the private domain by telling Sebastien nicely that he should go to his room if he wanted to knead his penis, he attacked me after being stuck in the house for two weeks. You see, given the fact that he was doing it non-stop, he could never leave the room or the house.
The breakthrough with Sebastien’s “penis problem” ultimately came when I observed that Sebastien could knead his penis by sticking his hand in the big pocket of his baggy shorts. Thus, this behaviour was somewhat camouflaged: to a bystander, Sebastien could be rummaging through his pocket for something. It was a workable and acceptable compromise for us. Sebastien, when reminded, adhered to this new rule without any resistance.
Achieving this little breakthrough did not bring me much comfort. The whole time, I felt too engulfed by all my struggles with Sebastien to know how to capitalise on my progress or when I should back off. My disorientation stemmed from my acute awareness of my inability to interpret his increased attempts to communicate with me. Initially, he would string together words to make verbal requests like “Close the door” or “Give me water”. His spontaneous initiation of speech was an encouraging sign for someone who spoke as little as he could get away with. That was how Sebastien the boy was like. However, these verbal requests soon took on an unpleasant aspect. Sebastien’s insistent manner in which he made these requests began to resemble more like attempts to control me and order me around than actual interactions. On some occasions, I would tell him, “Close the door yourself.” His face would turn red and he would raise his voice: “MAMA, CLOSE THE DOOR!” If I just walked into my bedroom and locked the door behind me for my own safety, I would hear him shouting “MAMA! MAMA! CLOSE THE DOOR” with an emotional intensity that seemed utterly out of proportion to the situation. At other times, he would even pounce at me.
Another transformation of Sebastien, with both positive and negative sides, was his spontaneous tendency to shower his affection on me, surprising me by coming up behind me to wrap his arms around my shoulders and breaking out in giggles. This was yet another aspect of him, which I had not seen in Sebastien, the boy. However, Sebastien’s display of physical affection also had a dangerous quality. For instance, he would insist that we walked with our arms interlinked in the middle of the road through the parking lot in our neighbourhood, even when there were cars moving in and out of the parking lot constantly. Walking in this manner placed us in harm’s way. As I tried to pull away in the face of an approaching car, Sebastien would actually tighten his grasp, making me feel trapped against my will. And when I managed to extricate myself, I would make sure that I ran ahead quickly just in case he struck me.
Through all these interactions, I could sense that Sebastien was hurt by my reactions. He seemed to think that if I didn’t do what he wanted, I didn’t love him. I didn’t know how to change Sebastien’s spurious notion of love. At the same time, I wasn’t even sure that my interpretation of Sebastien’s thinking was correct.
Nonetheless, I didn’t always get it completely wrong about Sebastien…
* * * * *
Even during the worst of my relationship with Sebastien, our holidays abroad as a family had always offered us a much-needed reprieve from our unhappy battles in Singapore. During these interludes, the pressures of expectations, routines, appointments, and the hustle and bustle of the urban landscape couldn’t seem further away. It was as though we had called a tacit truce.
Sometime in September 2013, on the third night of a rejuvenating holiday in the Southern Alps, Sebastien burst into tears as he was colouring at the dining table. These were no quiet tears: Sebastien was not only weeping copiously but also emitting howls of anguish at frequent intervals. Over the past couple of years, I had only heard Sebastien crying with such intensity after our fiery confrontations. However, nothing like this had happened.
In fact, we were enjoying the most fantastic holiday together. Each morning, we would set out from the cosy apartment that belonged to Jerome’s parents and hike up a mountain under sun-drenched, azure blue skies. Then after about 3–4 hours of hiking on the tranquil slopes, where we mostly had the whole place to ourselves, we would stop in front of a postcard-perfect scenery for a picnic lunch. As we lay back on the boulders, Jerome would compose sandwiches with slices of delicious French bread stuffed with cheese and ham. Even though Sebastien was not a ham-eating person, it didn’t take long before he was seduced. He was even willing to say the French word, jambon, to request for more helpings. After we had regained our second wind, we would make our way down the mountain that invariably led to a café, where we would indulge in a slice or cake or ice cream. Sebastien had more than his fair share of strawberry ice cream or cake — his favourites — throughout this trip. At the end of the day, we would retire to the apartment, where Sebastien did not hesitate to make himself feel at home. From the very first day, he had curled up on the couch in the living room and snuggled under the woollen blanket to warm up after his shower. Our holiday experience, even by Sebastien’s standards, was as close to paradise on earth as one could get. Until this moment, Sebastien had seemed blissful.
Neither Jerome nor I knew what to do. There was something in the intensity and fiery nature of his teary outbursts, which made us decide to give him a wide berth to unleash his angst. On my part, I felt so uncertain about his state of mind that I decided to lock myself in a bedroom with a book, not knowing whether he might just hit out at me before he ran out of steam. My fears proved to be unfounded. About 40 minutes later, his crying subsided and he went to bed.
I waited till we had completed another hiking day before speaking to Sebastien about his crying episode. Sebastien was in his favourite spot, snuggling with me under the woollen blanket on the couch. This was what I loved about our holidays when Sebastien and I could engage in these precious moments of intimacy, which belied the fraught nature of our relationship in Singapore.
Having a “conversation” about emotions with Sebastien had a high chance of going nowhere, as his spontaneous language was largely limited to requests. Nonetheless, the posing of a series of carefully-formulated “Yes/No” questions could offer some clues if you pay close attention to Sebastien’s tone of voice, hesitation, demeanour, the tunes he hums, or even laughter. Thus, a “Yes” or “No” could convey shades of meaning and intention, depending on how he says them:
“Sebastien was crying last night. Were you sad?”
He replied with a little hesitation, “Yes.” His uncertainty could mean that either I hadn’t gotten to the heart of the matter or he wasn’t sure where this conversation was going.
“Why was Sebastien sad? Were you crying about the holiday?”
Sebastien responded immediately, “No.” This was an emphatic response.
“Does Sebastien like France?”
His response was just as fast as before: “Yes.”
“But Sebastien was crying. Sebastien was sad.”
He replied almost ruefully, “Yes.”
What is most remarkable about that moment was that Sebastien and I were actually engaged in a conversation about the causes of his teary outbursts. I could sense that he wanted me to understand what he was experiencing. We were completely attuned to one another in a relaxed state: all the tension and unhappiness from the past seemed to belong to another lifetime. I was posing questions naturally to him without the expectation that I would really get answers from him. And Sebastien who tended to hide behind a wary and secretive façade was also opening up to me. Our dialogue also happened away from the context of our hectic and stressful life in Singapore, after another exhilarating hike in the most stunning of scenery under the glorious blue skies.
To this day, I still can’t put my finger on it. But from time to time, in my interactions with Sebastien typically when I am able to suspend my expectations and judgments, insights would come to me. And so it was that day that amidst my questioning of Sebastien, images of our first evening in France, where we were dining with Dominique, Jerome’s brother, as well as Diane, his wife and two sons, at their apartment in Paris, would float into my consciousness.
That night, all of us, including Sebastien, were seated around the dining table in a convivial atmosphere. While the rest of us enjoyed the meal prepared by Diane, Sebastien ate pizza we bought from the store and several pieces of French bread. As Sebastien was accustomed to eating by himself with no more than two people (Jerome and me), I had not known how he would react to such a social situation. Although he could have eaten in the living room area, where there was more room, Sebastien opted to sit at the crowded table. I was at once happy and nervous — happy because he had included himself, nervous because I was always worried about his behaviour around others.
Everything went smoothly until Sebastien had finished eating his food. Amidst the excited chatter that was going on at the table, Sebastien started to make loud, low-pitched noises that were somewhat intrusive and annoying. Thinking that Sebastien was fed up with the group chatter, I told him that he could just go upstairs to the room to do his colouring. However, Sebastien continued to linger at the table, as though he was unwilling to leave. There was an awkward silence for a few moments, as we all waited to see what Sebastien wanted to do. And then with big exaggerated movements, he pushed the chair away from the table, stood up, and marched upstairs. For the rest of the dinner, I felt as though something had transpired with Sebastien. But I could not put my finger on it. Soon, subsumed in the conversation, I had forgotten about my concerns for Sebastien. As I was not proficient in French, conversing with the others in French took centre-stage in my mind.
As these images of the dinner returned to me, I suddenly knew why Sebastien had been so unhappy: We had been so rude to him. Although we had included Sebastien at the table, we had excluded him from the interactions by conducting the conversation entirely in French! Everyone at the table could speak English. They would not be conversing exclusively in French if someone at the table could not speak it. Yet we did not extend this courtesy to Sebastien who could only understand English. We had assumed that it didn’t matter because he hardly spoke or socialise.
To verify my hunch, I asked Sebastien about that dinner in Paris: “That night, when we were staying with Dominique, you were very noisy at dinner. Do you remember?”
Sebastien replied quickly, “Yes.” The immediacy of his reply suggested that I was on the right track.
“Were you angry?”
Sebastien hesitated when he confirmed, “Angry, y-yes.”
“Was it because everyone was talking to each other in French and you didn’t understand?”
This time, he spoke loudly, “Yes”, which confirmed my theory about what had caused Sebastien’s tears.
After this exchange, I could feel Sebastien’s body relaxing. It was as though he was happy to have conveyed what he had experienced to me. This was momentous for us.
But just then, another question just came into my mind: “Sebastien, were you crying because you are autistic?”
This question had crossed my mind a thousand times. However, it had always felt too difficult to bring up and I would always censor myself.
And Sebastien lifted his head and tilted it up towards me such that he was looking at me as he asserted loudly: “YES.” Ultimately, his anguished crying was not about his exclusion from a social gathering. It was about the immutability of his condition: as an autistic person, he would always be living on the periphery of a social community, alone and misunderstood — an exile that would extend till the end of his life.
Although Sebastien’s “Yes” might not have seemed like much, it cut me to the quick. While I had always striven to know Sebastien from the inside to better help him, I realised that I had been cut off from his pain and suffering. Even at this point of our relationship, I had wanted to entertain the wish that Sebastien’s condition had left him unscathed, that he could be oblivious to the unfairness of his condition and his life.
Unfortunately, despite his socio-emotional delays, Sebastien was not impervious to the hurt and sting of being relegated to the periphery. He was very aware of his autistic condition and how it marked him as being different from the others. And sadly, Sebastien would not be spared the hurt and the suffering of having a condition that was not of his own making. It made me feel helpless to know that there was absolutely nothing I could do to change this situation.
At that moment, I found myself straining to contain the surge of anger, anguish, and frustration that I had felt back when I had first received Sebastien’s diagnosis when he was just 18 months old. I could feel the knot of tension in my stomach tightening, while I tried to fight back angry tears. But it was futile; the tears came gushing out anyway, with such a fury that I found myself struggling for air. I wanted to scream at the top of my lungs, pummel my fists at something, and even bang my head; I had to clench my fists tightly to stop myself from doing so. I came close to “living” Sebastien’s grief.
That was when I realised how much Sebastien had contained his grief last night. He had “packaged” his grief in powerful howls of anguish, but he didn’t do anything violent towards himself, things, or me. This, in and of itself, was amazing.
Nonetheless, having experienced the vastness and depth of Sebastien’s grief, I wondered how he could continue to stem the tsunami of emotions rising within him in the days ahead. I imagined that, as his perception of his difference from most people in mainstream society and his inability to participate in it deepened, his grief could become unbearable at times. And if that time were to come, I wasn’t sure that I would be able to withstand its onslaught without being destroyed by it.
As I write these words today, I realise how close I got back then to truly understanding him. I was able to empathise with him in a way that I cannot do justice to with words, for I connected with him in a way, which extended far beyond our limited verbal “Yes” and “No” exchanges. They led me to his deep-seated grief and even helped me to experience what he felt literally. It was an incredible instant of connection.
But I didn’t know how to capitalise on it…
* * * * *
In fact, over time, our moment of special connection would recede from my memory. It became relegated to the past — an awesome, but atypical, three-week experience of a quintessential showcase of an enlightened society in its treatment of families with special needs loved ones. Throughout our journey that included Paris, Marseille, the Southern Alps, and small towns in the Languedoc-Roussillon region, the attitude of the people towards us ranged from a discreet and thoughtful acknowledgement of Sebastien’s handicap to hospitable concern for his well-being.
At the various carousels (and France seemed to be peppered with them) that were drawing Sebastien like flies to a candy stall, the ticket seller only took a second or two to regain her composure when I bought a ticket for the tall and gangly Sebastien standing next to me. She informed me that I could step up onto the platform with Sebastien without paying if I liked.
On another occasion, a ticket seller for a tourist train at Avignon surmised Sebastien’s condition quickly and discreetly; he charged us the discounted “child price” for Sebastien, even though Jerome had asked for three adult tickets. In France, it was common practice for the “child price” to be extended to individuals with special needs, if no specific pricing category catered to them.
Additional positive overtures during our French trip came from café and restaurant owners and waiters. At a brasserie in Paris, when we requested for a plate of French fries for Sebastien, which was not a separate item on the menu, the waiter took one glance at Sebastien and served us the dish, but didn’t charge us for it on the bill. In a small town, the café owner emerged from the restaurant to where we were seated and served Sebastien with a flourish, referring to him as a gentilhomme (trans. “gentleman” in French) and returning with a CD of computer games for him.
At one of the bed and breakfasts, the hospitable hostess went out of her way to make us, including Sebastien, feel welcome in her home. When we stepped out for dinner, Jerome forewarned her about Sebastien’s tendency to hum and sing loudly in the shower and left our contact number in case she was concerned. Upon our return, she especially stepped out into the hallway to reassure us with the friendliest of smiles that Sebastien posed no problem at all and they were not in the least bit bothered by his “singing”. The next morning, when we were all seated around a crowded table with other guests, all engaged in jovial chatter, the hostess, who had been bustling around the table serving everyone with toasts, drinks, and cakes, noticed that Sebastien was covering the sides of his face. She came over and lowered herself to my ear to ask me whether Sebastien was all right and if there was anything she could do for him.
I hold each of these episodes close to my heart, including the smile that radiated from a young lady at the three of us across the tombstones of the Pere Lachaise Cemetery. It was just a smile, but in it, I could feel her support and encouragement for our challenging life journey with Sebastien.
Finally, at Jerome’s parents’ wedding anniversary party — the primary reason for our trip, we were all warmly welcomed. With a huge turnout of more than 50 guests, this social event with no particular activity of interest for Sebastien other than food and the colouring activities that I had brought for him could have been disastrous. However, the moment we showed up, warm and friendly faces were surging at me with bises — the French greeting of two pecks on the cheeks. They gushed about how delighted they were to meet me. Before long, I was caught in the whirlwind of meeting Jerome’s extended family and friends, putting faces to names that he had mentioned over the years. I was having such a great time conversing in French with these warm and effusive people that I literally forgot about Sebastien.
At some point, when I did get my head above the sea of people to look for Sebastien, I saw him lounging comfortably in a patio chair, surrounded companionably by other guests. He had a big grin on his face, soaking in the atmosphere. Whenever a plate of hors d’oeuvres or drinks was brought around, someone seated nearby would make sure that Sebastien got something to eat and drink. Although they did not really know how to interact with him in a more substantive way, they would look him in the eye and give him a warm smile. Essentially, they embraced him as part of the group and made him feel at home. Thus, thanks to the hospitality of the hosts and the warmth of the guests, Sebastien managed to sail through a party that lasted for more than six hours, involving a lavish buffet, several speeches by family members, and a slideshow. Sebastien’s excited yelps throughout the speech segment, as he did his colouring, was greeted with warm and understanding smiles from the audience within the vicinity.
Such an exhibition of collective goodwill by a large motley group of people was something I had never experienced in all my years of raising Sebastien. Their united affirmation of Sebastien’s presence in their midst allowed me to feel relaxed about Sebastien’s atypical behaviour. I could not have been given a more welcoming gift by these virtual strangers, many of whom were meeting us for the very first time!
By this point, Sebastien and I had been living in Singapore for eight years. Except for the period after we were featured in an episode of a Chinese television series called Joy Truck, which thrust us into the public limelight for several months, most people would regard Sebastien, the teenager, with an air of fear, anxiety, and veiled disgust. They barely sought to conceal their unease with having to share the crowded public space at close quarters with such a strange creature. Some even looked as though they were angry with me for bringing Sebastien out into the open and intruding into their comfort zone. Instead of feeling like Sebastien’s guardian, I felt as though I was walking around with a ticking time bomb, with all the attendant feelings of stress and anxiety.
In contrast, what stood out the most about our experience in France was the casualness and the “matter-of-fact” way in which the French people treated Sebastien and other people with special needs. At one of the cafés, where we had ended our hike, I watched with incredulity as a mother fished out a baby bottle from her bag to instruct the waitress to fill it up with the drink they had ordered for their adult daughter with cerebral palsy. She did not look the least bit embarrassed; nor did the waitress bat an eyelid. For them, treating people with special needs with decency was not an act of charity, but a matter of course. When I marvelled at this attitude to Jerome’s teenage nephew, he had looked at me with wonder: “How else would one behave towards Sebastien?” Not once did people make us feel that we had inconvenienced them in any way to make special accommodations for him. The cumulative effect of their actions illuminated their acknowledgement of Sebastien’s right and entitlement to a place in society. He is, first and foremost, a human being, who deserves to be treated with decency like his neurotypical counterparts. And if anything, he deserves a little more, for his life has been made harder by the unfairness of circumstances beyond his or my control.
As we sat in the aeroplane, waiting for our flight to take off, I wept. At the time, I wasn’t even sure why I was feeling so emotional. The whole experience was still too new and too fresh. Thus, I wasn’t able yet to find the words to articulate the significance of the enveloping effect of this collective spirit of kindness, understanding, and empathy on Sebastien and me individually, as well as our relationship with one another. In fact, it would take me constant reflection and putting two and two together to realise the sheer power of society’s perceptions on the quality of life for families of individuals with special needs. For Sebastien, people’s positive attitude made him feel accepted and embraced. As for me, in my role as his mother, it meant that I wasn’t pressured to force Sebastien to conform to society’s norms. This had been the never-ending source of tension that had torn apart our relationship.
Even more significantly, in terms of the narrative, I wept that day, because of a sense of premonition. Regardless of how great the vacation had gone, I would forget what this had felt like — how great Sebastien could be or how nice it was when we weren’t feeling the weight of society’s pressures — once we had returned to Singapore and we were no longer breathing in the atmosphere of enlightenment and acceptance…