Sebastien's Meltdown: Parenting a Proudly Non-Verbal Autistic Adult

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This is Episode 4 of A Mother's Wish's endeavour to share more about our approach: EpiEco (Autistic Individual as the EPIcentre of the ECOsystem).

The Meltdown

From an optics standpoint, these photos would appear to mark the apogee of my connection with him during our holiday in November 2024. The next day, Sebastien, my autistic son, smacked my face and head so hard and so fast 3–4 times that I never saw it coming. Although we were leaving the holiday home, there were still four more days left of our vacation. Sebastien typically reacted with great emotion only on the day of departure or the day before.

This time around, I was going through the "procedure" of showing Sebastien a "social story", consisting of corresponding words and pictures, to explain his holiday programme. Through this visual tool, I was adding a few more words to remind Sebastien about getting up early the next morning so that we could vacate the house on time. He had been waking up rather late on the preceding days. We had let Sebastien sleep more than usual: after all, it was the holidays, and it seemed like he craved the sleep.

However, something was not quite right with Sebastien. He was more agitated than previous evenings, touching the tabletop and the bench he was sitting on obsessively and compulsively. Out of the blue, he grabbed the black pen I was holding and rolled it back and forth on the ground. His agitation had an added intensity that should have set off alarms. But I was blind to it, concluding that Sebastien was regulating his emotions because of the imminent departure.

In retrospect, I could concede that I had observed Sebastien's rolling of my pen with some impatience, distracted by the evening's agenda. Dinner preparations and packing loomed ahead, as well as the worries of whether Sebastien, who had been lingering in bed till noon, would wake up in time the next day. I had also not realised how aggravatingly patronising I was when I was belabouring the departure routine as though he were a child. We had gone over it with the first house, and Sebastien had navigated it with flying colours. If Sebastien had not given me a "whack-up call", all of this would have gone over my head.

If Sebastien had not given me a "whack-up call", all of this would have gone over my head.

However, in the immediate aftermath, the incident sent me reeling in shock and plunged me into a downward spiral. All the advice I had given other parents to not overly focus on meltdowns flew out the window. Though I knew I was overreacting, I couldn’t stop the swirling voices within me, competing to make sense of what had happened. Was it a regression? Has the Bali decision been all for nought? How could I go through the next four days of what should have been our precious precious time together — 18 days of reunion out of six months of separation? Will I be able to look at him without feeling terrified or resentful?

All the work of the past eight years of creating the Bali Bubble to improve the quality of Sebastien's life seemed to have erupted within a matter of seconds. Eight years dissipated in an instant: I found myself hurtling back to the days in Singapore when everyday life with Sebastien was like walking on eggshells, never knowing what could set him off.

All the work of the past eight years seemed to have evaporated within a matter of seconds.

That night, as I struggled to stay afloat, it was left to Jerome, my husband, to talk to Sebastien. It was not a conversation about why Sebastien had struck me. At that point, both Jerome and I realised how upset Sebastien was about leaving this house. This house had a distinctive feel to it, resembling a contemporary museum with multiple floor-to-ceiling glass doors, high ceilings, and walls adorned with massive abstract paintings. Tucked away in the forest near Margaret River, our closest neighbours were a family of kangaroos. It was an idyll that couldn't get much better than that. In my focus on getting on with the night's programme, I had ignored Sebastien's grief. He needed me to "get" him, and I missed it. And he was hurt.

When I emerged from the room, Sebastien was much calmer. Jerome and I hugged Sebastien, enclosing him in a protective circle. As Jerome and I reiterated how "sad" we all were to leave the house, I could feel the calm and sad acceptance of this reality settling over us like a comforting cloak. At that moment, it became clear that all Sebastien had wanted was so simple, yet so profound and so vital. He simply wanted us to pause, step back, and acknowledge the sadness together, instead of moving to the next event, as though we were enslaved to the dictates of the schedule. And he was right. It was a beautiful moment.

Yet, it was still tainted by the anguish that hovered over me — I wished that this moment had come without him hitting me. And I knew that the real struggle over the next few days would not be about Sebastien but about my response to what had happened.

The Grief

I woke up the next morning to the soreness on my face that I couldn't dismiss. Yet it would take a day and a half for the voices of regret, magical thinking, and perfectionism on the surface of my mind to die down. They were clinging to the fantasy that I could go back in time to see Sebastien's meltdown coming so that the holiday could be "perfect".

As I pulled aside the veils of fantasy to confront reality, I could understand why the meltdown and the loss of the "perfect holiday" had felt so devastating to me. Until it happened, I had not acknowledged how terrified I had been of any episode of aggression. Its absence was a redemptive triumph, a consolation prize to assuage my repressed grief. This grief had been so deep that I had told Jerome, "I cannot even imagine a non-autistic Sebastien," when he had asked me whether I had wondered what it would be like if Sebastien had not been autistic. But, in recent years, whenever I encountered nieces and nephews around Sebastien's age who have reached adulthood at family gatherings, the sadness of having an autistic son has become more acute. The strange aching sensation in the pit of my stomach that I continuously push down to keep it at bay has become all too familiar.

For the most part, the holiday had appeared to go smoothly. But within me, I was disturbed about the adult Sebastien, who was now 28 years old. With a decline in his metabolism, he had gained weight. Moreover, he had developed a habit of picking at the skin on his face and body over the past year, which had resulted in some scarring. So obsessed was I with Sebastien's appearance that I would observe him from different vantage points in the hope of "unseeing" these undesirable changes. I fell into a panic, striving to "solve" these issues by telling Sebastien how sad I was about his little wounds and scars and teaching him tips on how to stop his skin-pulling. Based on some research online, I also bought him fidget toys — a pink and purple unicorn that he could pull and squeeze to his heart's content — in the hope that this would stop his skin-picking. It didn’t. In fact, two days after the meltdown, he threw them into a public trashcan after playing with them throughout the holiday.

Another change was Sebastien's heightened reluctance to respond with words. He would speak only when he wanted to, not even echoing our words as a form of acknowledgement. Furthermore, he insisted on using body language to express himself — not just touching surfaces of things but also our faces and holding out items when he wanted us to take them. It was as though he was flaunting his way of communication at us, adamant that we accepted how he wished to communicate.

Despite my best intentions, I couldn't help feeling judgmental towards Sebastien. I wished he had not put on weight. I wished he would stop picking at his skin. I wished... I wished... I wished... I was stuck in my perspective of Sebastien — a mainstream lens, struggling to shake it.

The Awakening

Time was needed for the words and thoughts to run the course of grief. Only when the swirling chaos of words died down within me and a quiet stillness settled over me did the lessons of this holiday penetrate my bones. Suddenly, a heaviness from out of nowhere anchored me solidly in my body and plugged me into where Sebastien was.

Only when the swirling chaos of words died down within me and a quiet stillness settled over me did the lessons of this holiday penetrate my bones.

I found myself watching Sebastien intently and interacting with him without being bothered in the slightest by his scars or his weight. Similarly, Sebastien’s refusal to use words, except when he wanted to, didn’t matter in the least to me. At the end of the day, instead of "doing" activities like watching YouTube music videos, we lay down on opposing ends of the sofa, eyes closed, with me massaging his leg and feet. We were both tired — there was no agenda, there were no worries.

In this space of surrender, I could delve deeper into why Sebastien's meltdown had occurred and what he was telling me. Throughout the holiday, I had neither “seen” nor “heard” the grown man Sebastien, who was now 28 years old. Although I don’t know why he has been picking at his skin to the point of scarring, what I do know is that he doesn't want me to intervene beyond disinfecting his wounds. In using fewer words to speak, Sebastien was highlighting his "pride" in his communication style, and he wanted to use it to communicate with us.

And finally, Sebastien did not need to be reminded of the "departing procedure" with the social story. He had already followed it with flying colours when we left the first house, not to mention on our previous trips. In fact, just before he hit me, he had shouted "social story" loudly, as though he was angry about it. I had always thought that the social story gave Sebastien a sense of control, but it occurred to me that I had been leaning on this tool as a means of reining in his emotions. However, this was not what Sebastien wanted. He didn't want to hold back his emotions; he wanted to express them in the open so that they could be acknowledged and validated. What had made him angry was my endeavour, albeit at an unconscious level, to disregard these emotions. Ironically, because of our inability to acknowledge the intensity of our autistic children's power and complex emotions, we can often exacerbate them.

Ultimately, what had been hard for me to confront was that Sebastien had changed. He was asserting unapologetically who he was, whether this was to our liking or not. There was a defiance in the way he persisted in pulling his skin and his intensified use of noises and gestures to ask us to make requests. Instead of following others' dictates, Sebastien was demanding to be accepted for who he was, for his endeavour to make sense of his life, however atypical the former may be.

Instead of following others' dictates, Sebastien demanded to be accepted for who he was, for his endeavour to make sense of his life, however atypical the former may be.