Week 14 of Serialization: Where Does My Autistic Son Belong?
In 2019, I published Where Does My Autistic Son Belong?. It chronicles my struggle with raising my adolescent autistic son, Sebastien, and my subsequent decision of setting a home for him in Bali. As part and parcel of A Mother’s Wish initiative (amotherswish.com.sg) to raise awareness about the need to treat autistic individuals with genuine respect and empathy, I am serializing the book on Medium (please see the links below for all the previous chapters serialized to date up to Chapter 13):
CHAPTER 14
THE AUTISM UNIVERSE IN THE SPOTLIGHT
(May — June 2016)
One day, a rare opportunity came for Sebastien and A Mother’s Wish, which thrust my pursuit of the overseas solution to the back of my mind. A Mother’s Wish had been invited to showcase Sebastien’s paintings and our work, in tandem with a production about a family struggling with autism by Pangdemonium, a Singaporean theatre company. Written by Deanna Jent, the mother of an autistic child, Falling is a gripping and realistic portrayal of the stress borne by a family living with a largely non-verbal autistic teenager. As he was constantly teetering on the brink of a meltdown due to his sensory sensitivities, the family members, particularly the self-sacrificing mother who bore the brunt of his care and attacks, were perpetually on edge in their endeavour to avert the meltdowns.
To say that this play hit a little too close to home for me was an understatement. Somehow, it felt distinctly odd to me that people were paying to watch a dramatic recreation of the autism universe that was my life — a life from which I wished I could escape. I also struggled with the fact that such a play would be thrust out as a representative version for the world to behold, as though it were the ultimate representation of the autistic universe. Could the actors genuinely grasp the reality that I was living? At that point, my suffering felt so central to my identity and my experience of life that I kind of felt threatened by a spectacle put up by strangers to the autism universe, at an unconscious level. I saw it as usurping my experience somehow.
This invitation also stirred up bittersweet emotions for me. I was certainly grateful that Sebastien and A Mother’s Wish would stand to gain from this incredible exposure. In the ideal world, I would have been an unequivocally proud parent basking in the limelight with Sebastien, my incredible artist son by my side in front of a horde of exhibition visitors. However, in the real world, Sebastien would not have his moment in the limelight. Only his paintings, Jerome, and I would be there to represent him. We weren’t about to take the risk that he would wreak havoc at the event.
With my ambivalent stance, it took me a few days before I could gain a footing at the event. Once I finished setting up Sebastien’s paintings and the scarves made from digital photos of Sebastien’s paintings, I stood by them like a “lamp-post”, smiling awkwardly and doing my best not to feel out of place. I was conscious of the whirlwind activity of all the people, be it the staff and the audience. It seemed as though everyone had a real role to play, except for me. Without a selling bone in my body, I almost felt embarrassed at being the face of Sebastien and seeking people’s financial support for his paintings and products, as well as advocating for the cause of A Mother’s Wish. I was hyper-conscious of a few awkward glances that came my way or the deliberate avoidance of my gaze as they filed hurriedly into the theatre. For someone who was not a natural-born “salesperson”, I honestly wondered whether I would be up to the task putting up a “public relations” façade for a good three weeks.
However, little by little, my negative attitude began to morph as I watched spectators emerging from the theatre trembling and weeping. There was no question that this 90-minute play was offering a shocking initiation into the autism universe to those who were totally unfamiliar with autism. Quite a number of them surged past me uncomfortably, leaving the theatre without giving one look to Sebastien’s paintings or the merchandise. Perhaps, the play had given them a far stronger dose of “reality” than they could stomach. Though I understood why my presence, and by extension, Sebastien, would be difficult for them to take, it didn’t feel good to be turned into an “object of an uncomfortable gaze”.
So self-conscious was I to the spectators who seemed to have “fled” the scene that I held myself back initially, even when there were supportive spectators who lingered to admire Sebastien’s paintings and scarves. I wasn’t sure whether my approaching them would scare them away from buying Sebastien’s paintings and products. After all, they were there for an enjoyable evening of entertainment, with an art exhibition of an autistic artist thrown in. Should I be stepping across the boundary and thrusting myself into their space to communicate the fact that the 90-minute drama they had just witnessed was actually my daily nightmare?
In coming up with this question, I finally had the clarity I needed to perform my role meaningfully. It wasn’t hard to for me to answer the question with a definite “yes”. What made the existence of Sebastien’s paintings and scarves so unique was not that they were just aesthetically pleasing, but because they were created by an autistic person who also struggled with aggression and self-injury. More than just an exhibition with beautiful products for sale, we were a visceral reminder of the reality of what they had just seen. Therefore, we were part and parcel of their experience of the autism universe — the other half of the autism universe that was grounded in reality, which did not end conveniently in 90 minutes. After all, the actors were putting up a no-holds-barred performance of the autism world to the audience, even at the risk that what they were doing could be difficult to watch. So I too decided to seize upon the opportunity to share the reality of my life with the visitors, while the paths of our lives crossed fleetingly in front of this booth. If they were interested, I would not hold back from my sharing.
With this breakthrough in my perspective, I warmed up to my role, even creating and wearing a nametag that declared myself to be “The artist’s mum”. No longer held back by my fear that I would be “scaring” people away, I did not hesitate to draw comparisons between the severely autistic young man in the play and Sebastien. In fact, once I had crossed this threshold, I felt almost bound by a sense of mission to grasp hold of this precious opportunity to speak out, to let the public know that what they had just witnessed in the play was no exaggeration, but a very, very real, simulacrum of the reality.
Opening up about my life with Sebastien elicited a tremendous outpouring of sympathy and support from the visitors to the booth. Even as they heard about Sebastien’s outbursts of self-injury and aggression, they were still celebrating his artistic talent, exclaiming at the uniqueness of his paintings and marvelling at the beautiful silk scarves. Initially, it was hard for me to receive this deluge of support — the celebratory hugs and praises revolving around Sebastien were not what I had come to associate with him. In my daily life with Sebastien, no one saw him as a talented artist and showered him with accolades. Depending on how he was behaving, people on the streets either saw him as a juvenile delinquent or a crazy person with bizarre mannerisms.
However, as time went on and the kindness of strangers who even stepped forward to hug me and wept with me, I found myself softening with appreciation. For those three amazing weeks, autism was not a private family struggle, hidden behind closed doors; it was thrust out into the open. Each night, I was enveloped by the sea of encouraging faces, the extension of hands and hugs, and the purchases of Sebastien’s paintings and products. Riding on the “high” of the collective caring of the people, I even indulged in the belief that their support could turn things around for us. I felt so positive about everything that I would keep Sebastien updated about the event by showing him my regular Facebook posts thanking the people who had purchased his paintings and scarves. By involving Sebastien, I wanted to let him know how much support he was receiving from the outside world.
In fact, I was feeling so positive that I began to look forward to using the free ticket that Pangdemonium had given me to attend the play and taking part in the post-show dialogue involving the actors, an invited professional/parent, and the audience. It had been quite some time since I had an evening event to get dressed up for. I was so excited about attending the play that I already knew which dress and which of Sebastien’s scarves I would wear that night.
And then Sebastien attacked me. The day before the performance that I would be attending, Sebastien and I were heading for his weekly functional training class in a car. For some reason, Sebastien kept encroaching into my space to look out of my side of the window, pushing his weight against my body. When I endeavoured to get Sebastien to sit back properly, he screamed and pummelled my face and my arms. He was so close to me. Within the tight confines of the car seat, I could barely raise my arms to fend off his flurry of blows. The driver stopped the car on the side of the highway. I pulled the car door handle and got out. The driver also stepped out and hurried over to me. For a few moments, I just stared at the stream of cars swishing by on the highway. I was buying time to decide what to do — continue to the class or turn back and go home. Although I would have preferred to have gone home and hidden inside my bedroom, I decided that it was far less risky to proceed to the class. However, I moved to the front seat of the car. That was the last time I sat on the back seat with Sebastien. The rest of the day went by without further incident.
Nonetheless, I was shocked. This was the first time that Sebastien had ever attacked me in the car. I wasn’t sure what had caused him to erupt in this fashion. Perhaps, he had felt entitled to do whatever he wanted in the car because I had not spent as much time with him on recent weekends as usual. I was away the whole day, taking care of the booth during the matinee and the night performances.
Until this incident, I had felt as though my “second life” at the Pangdemonium exhibition had woven a spell of positivity and goodwill around me, warding away all that was negative about my life with Sebastien. However, with this attack, Sebastien had broken the spell. Why did he always have to ruin things? Why did the good in Sebastien always get tainted by the darkness in him?
Feeling devastated, I felt almost embarrassed about showing up at the booth with my bruises and the scratches, which seemed to be amplified under the spotlights of the foyer. There was a part of me that wanted to get on with my booth tending duties per usual without saying a word. However, when a Pangdemonium staff member came by to ask an innocuous “How are you?”, I unleashed a flood of tears. As she wrapped her arms around me, I told her what had happened in the car. That was when I realised that I didn’t want to pretend the attack never happened. This attack, all fresh and raw, was the ultimate complement to the play.
Nonetheless, I didn’t know whether I would be up to the task of baring the horrors of my life in front of an audience without collapsing into a pool of incoherent sniffles. Even on that very morning of the performance, I was still wiping away the flood of angry tears from my face. Wiping away the tears made me feel the painful sensations of my bruise and the scratches on my hand. I really didn’t know how I would fare under the spotlight later that night.
I made sure to control my emotions throughout the watching of the play. After all, I was no ignorant initiate into a brand new world, but a seasoned veteran. I took pride in holding back my tears while watching the play, even at the terrifying climax when the mother was pinned against the wall by her autistic son who was strangling her. Even as I could hear the sniffles breaking out in different parts of the theatre, I willed myself to stay strong because what was playing onstage was just one day in my life. It was nothing terrifying, nothing shocking for me. Crying was an act of vulnerability and fragility that I could hardly indulge in. After all, I still had to return home the next day when I would be stepping right back into that world. So in contrast to the sniffles erupting around the theatre, I did not shed a tear. Perhaps, I would do all right when I go up onstage for the post-show dialogue in just 15 minutes.
Enveloped by the hot glow of the stage lights that plunged the audience into complete darkness, I stared down at the scratches of my hands, seeking for the resolve to speak about my recent attack. I wondered how the audience would respond to my raw and honest revelations about Sebastien’s capacity for violence.
I hesitated. But tears welled up in my eyes. I needed to speak. So I sought for the microphone and spoke openly about Sebastien’s most recent attack on me. Although I wept copiously, the tears were not uncontrollable ones of self-pity. Rather, they were stoic tears that confronted the hard reality of my life with Sebastien. I told the audience about a painting by Sebastien that I had entitled “Resurrection”. For each time Sebastien attacked me, I would feel like I was dying a little, but the next day, I would pick myself up again to continue looking after him. That recurrent cycle of dying and reviving was my life.
Speaking openly about the awfulness of my life, instead of “censoring” my representation or pretending that it didn’t bother or hurt me, was immensely liberating. In speaking out so openly about my pain and heartache, I realised that, more than anything else, I wanted the world to bear witness to how hard I had fought to raise Sebastien and love him. Even if the outcome of our homeschooling life was far from ideal, even if I was contemplating the possibility of moving him far away from me, he was and would forever remain the love of my life. And without any premeditation, I had captured the heart of A Mother’s Wish — the desire of a beleaguered mother to love her autistic child despite impossible odds.
It was only when I had stopped speaking that I became immediately self-conscious of the silence that had descended over the auditorium. When Tracie Pang (the director of the play) asked the audience if they had any questions, the auditorium remained just as quiet as before. With much of the audience hidden in the darkness, it was hard to see their expressions. Although staff members were moving along the side aisles to pass the microphones to audience members, no one asked for it. I wondered whether I had overstepped some kind of etiquette and quashed the atmosphere for this post-show dialogue.
The only response I could see came from Adrian Pang (the actor playing the father in the play) who was seated next to me onstage. Throughout my sharing, he had been gazing downwards, shedding quiet tears. With the audience swallowed by the darkness, I had been speaking, while gazing downwards at the palms of my hands catching my falling teardrops.
When we went offstage, Adrian, along with the other actors and staff, burst into effusive praise for me. But there was hardly any opportunity for us to talk, as we headed into the narrow foyer housing Sebastien’s exhibition. It had become so overrun with visitors waiting to buy Sebastien’s paintings and scarves that I had difficulties making my way over to Jerome to help him cope with the thronging customers. At the same time, people were surging forward to give me hugs and encouraging me with words of support. By the time the intensely emotional evening was over, the mystery of the uncharacteristic silence of the audience was revealed to me by a Pangdemonium staff member: “You were so amazing. We walked up and down the stairs with the microphones. There was not a dry eye in the audience. Everyone was crying.”
* * * * *
Although our participation in the “Falling” event did not change the course of our journey with Sebastien, it became, nonetheless, a critical part of my grieving process. During the subsequent post-show dialogues, I regaled the audience with my atypical experiences of raising an autistic adolescent. They laughed at my humorous spin on the time when Sebastien exposed the tip of his penis from the top of his pants so that it got to “visit” the terracotta warriors in Xi’an. Caught up with navigating past the crowds of tourists, none of us had noticed Sebastien’s indecent exposure until hours later! The audience also giggled, albeit nervously, at the time, when Jerome and I pulled up in a taxi around midnight, just in time to intercept Sebastien, dressed only in his underwear, tiptoeing down the sidewalk, as though his discreet walking would make his behaviour less noticeable. When he had not been able to locate his pyjamas after taking off his daytime clothes, Sebastien had decided that he would just locate us in the neighbourhood, even though he didn’t know where we were! Although these incidents were presented in a funny way, they were seldom amusing at the time when they occurred. So much could have gone wrong with more dire ramifications.
Furthermore, not every account had an amusing side to them. Some of them were downright scary because Sebastien could have hurt himself. I am still traumatised by the time Sebastien straddled the window ledge of Jerome’s 10th-floor apartment in an effort to remove bird poop from the pipe. Even when we had gotten him to come inside, he kept running out to other spaces in order to try to remove the bird poop. It was hard to believe that something like bird poop on a pipe could cost him his life.
While my sharing did serve a societal purpose of raising awareness among the audience with regards to the travails of families raising autistic individuals, it also took on a personal dimension for me. My recollections conjured up not just the visual details of the scenes, but also the difficulties that Jerome and I had faced in raising an autistic adolescent who did not grasp the consequences of his action — consequences that had severe implications now that he was no longer a little boy. This was how scary and unpredictable our life with Sebastien was.
But it was also a validation of how much effort Jerome and I had put in to keep Sebastien safe, to love him as best as we knew how. I often felt sentimental with every word I spoke, as though I was moving further and further away from Sebastien and looking at him from a distance. As I gazed into the darkness of the theatre, it dawned on me that I was saying “good-bye” to Sebastien and my role as his caregiver.
Therefore, despite my appreciation for the warm support of the audiences and the visitors at our booth, I was acutely aware of the disconnect between their perceptions of me and what I was feeling inside. At times, it was hard for me not to feel like an impostor. In my eyes, I was not a courageous mother fighting to look after her son; instead, I was a beleaguered one looking for a way out. I no longer wanted to play the role of the heroic carer that they were cheering for. When the production run of Falling was over, it felt harder than ever to return once again to the isolation of my existence. The audience, the visitors, and the staff had offered an incredible source of respite for me.
Nonetheless, I had received a piece of promising news from Cecilia about a potential solution during the Falling production. Based on the recommendation of a friend, Cecilia had ventured out to a secluded old folk’s home that was tucked away in a village area, an hour away from the more touristy area of Ubud, Bali. There, individual residents lived in their own houses on a vast expanse of greenery, making the place look like an eco-resort. The photos that Cecilia sent of the interior of the house — the living room, the bedroom, and the bathroom — looked lovely and inviting. Jerome and I even joked that we would love to live there.
However, this option only met one of the three criteria to make this option viable. The other two criteria — carers and a natural environment — were absent and unknown, respectively. The staff members at the old folks’ home were very upfront about their focus on helping the elderly with dementia; thus, their amenities and programmes catered only to their needs. Still, they were willing to take a chance and see whether they could accommodate Sebastien.
The Bali option wasn’t perfect. But after two rounds of seeking an overseas solution, I knew that I couldn’t wait for an option in which everything was aligned with my ideal expectations. The process had never worked that way. Each time, I had started from the position of having to place my trust in complete strangers and take a leap of faith. What lent this option more solidity than the previous ones was that we would deal with individuals working in a professional capacity, rather than individuals with no accountability. Furthermore, they were backed up by an entire institution with significantly more resources and support.
Nonetheless, another recon trip was in order for me to determine whether this was a viable option.
At this juncture, with the passage of time and the Pangdemonium experience, which had allowed me to further process my feelings about Sebastien, I had finally arrived at an emotionally stable and realistic position about the overseas solution. It was a stance that was neither based on fear nor fantasy; instead, it was a genuine acknowledgement of what we were facing with Sebastien and what we wanted for him based on our circumstances. While we were pursuing an overseas solution for Sebastien to create a life for him, independent of me, we were aware of the fact that it would not entirely be the same as a young adult establishing his own life as a part of the natural phase of development. In fact, it would not even resemble the natural transition for many special needs adults from living with their own families to living in their own apartments in a wealthy country like Norway.
Ultimately, Sebastien was, by no means, as stable and mature, as I would have liked him to be. Nonetheless, I had become an impediment to Sebastien’s transition towards independence and adulthood. So long as I continued to stay in his life, he would always look to me to assuage his frustration and contain his unhappiness about the world. I would always be the butt of his attacks, which would prevent him from embarking on the painful journey of growing up on his own. To stop Sebastien’s instinctive reliance on me and his sense of entitlement in using me to manage his emotions, I had to recognise that my time as his life mentor was up. For both of our sakes, I needed to get out of his way.
At a practical level, my presence within the vicinity of his explosions placed me in increasing danger, as he grew older and bigger. For me, the survival of one episode only brought up the inevitability of having to face a pipeline of one episode after another until one day, Sebastien hurt me severely or even kill me. Whether it was his intent or not, both of our lives would be over.
Perhaps, most significantly of all, my embrace of the overseas option this time around was an admission to myself that I had never succeeded in connecting with Sebastien. Despite my efforts, Sebastien’s inner life had remained a mystery to me. Furthermore, I had discovered how much I had contributed to his unhappiness. All the honeymoon parenting years when I had imposed my standards of behaviour on Sebastien to force him to accommodate to the reality of living in Singapore had taken a toll on him. I had thought that things were going well because Sebastien had appeared tame, quiet, manageable, and thus easy to love. Until he broke out in aggression and self-injury, I didn’t know that those good years for me came at a heavy price for him.
From this fresh perspective, I could see the extent to which my blindness towards Sebastien had been influenced by my unspoken expectations of myself as a homeschooling mother. Despite the amorphous nature of my game plan in my homeschooling of Sebastien, achieving a happy ending of raising Sebastien as a well-behaved young man was an outcome with high stakes for my ego. I had felt great pressure to achieve such an objective because of the responsibility that I had taken to homeschool Sebastien. Sebastien, the model young man, would have been the ultimate validation of my homeschooling decision. This would silence the naysayers who had criticised my decision to homeschool him and accuse me of keeping Sebastien from getting the necessary exposure to “recover” from his autism. Sebastien, in his teenage rebellion, had completely shot my game plan to pieces. Ultimately, all my resentment and frustration at the rebellious Sebastien the young man who had “turned against me” made me question my self-worth. What good was I in failing to realise my meaning of life and a sense of purpose?
With this uncovering of the egocentric aspects of my homeschooling aspirations, I felt compelled to recognise that my raising of Sebastien all through the years had often made him feel terribly alone in this world. It is little wonder that he never directly sought comfort from me when he would express his profound sadness in tears of anguish. I was the last person who knew how to make him feel less alone. In fact, Sebastien’s happy moments had occurred in the tiny “sanctuaries” of colouring, painting, skating, and the forays into nature during our holidays, which had afforded him some relief from our homeschooling life. They were “sacred” spaces — realms with no people and no words, but a kaleidoscope of colours, water, and movement. These were the spaces and moments where he was left alone to connect with his feelings and his senses, with no outside interventions. It wasn’t hard to notice that these sanctuaries, which had given Sebastien a measure of peace, were the spaces when I was absent.
Thus, the true act of love for me would be to for me to step aside, find a sanctuary for him, and send him off into the world and life without me by his side. Unlike the mother in Falling who could not let go of her autistic son, I was determined to write a different and hopefully happier ending for Sebastien and me.