On the Road with Sebastien, My Autistic Son
Travelling with Sebastien, my autistic son, has always been an adventure. But it is quite different now, as we no longer live with him. For the past two years, we have been seeing him once every 1.5 to 2 months for periods ranging from 2 to 5 days and just one big 16-day vacation a year.
Thus, every reunion with Sebastien often thrusts us into a dramatically intense space that deviates significantly from my typical state of mind in my far more sedate life in Singapore. This is also why every trip is so precious to me because it offers a treasure trove of humbling parenting lessons that challenge me to be a parent whom Sebastien truly deserves.
From the get go, I have to make sure that I am mentally prepared for Sebastien's mercurial mood. If Sebastien is overly excited, I will be jolted by a barrage of rough tugs of my arms and heavy shoves at my face with his hard scalp. It is his way of defusing the overwhelming emotions that are ignited when he sees me again. Thanks to my meditation practice and my newfound understanding, I am usually able to steady myself by surrendering my need to control the situation. And then, through a combination of deep breaths, hugs, and a verbal request, in a gentle appeal to reason, I am able to get Sebastien to calm down relatively quickly. He has gotten his point across!
The next piece of the puzzle is getting caught up with the "new" Sebastien. As he is constantly growing and changing with his exposure to new experiences, our knowledge of Sebastien would be somewhat obsolete by the time we see him again.
On our most recent road trip to renowned cities in Croatia and Istanbul (September 2019), Sebastien's garbage-picking went on over-drive. While Jerome and I “oohhed” and “ahhhed” over the imposing churches and traditional buildings and tried to capture their splendour on our iPhones and camera, Sebastien’s eyes were not lifted to the glory of the architecture and history. Rather, they were fixated on the zillions of cigarette butts down on the ground. In fact, it seemed as though his visual acuity had increased sharply; not a piece of candy wrapper, an empty water bottle, and a discarded cigarette butt that peppered every pavement, street, and manhole could escape his notice.
Trying to get him to pose in front of the monuments or doing we-fies with us was like playing a strange video game of “Where is Sebastien?” Sebastien was weaving in and out of crowds and dropping in and out of sight behind columns and stone walls to retrieve yet another candy wrapper, water bottle, or cigarette butt. Just catching snapshots of Sebastien upright before he bent over to pick up another errant piece of litter was no mean feat.
Initially, both Jerome and I were at our wit’s end. The way Sebastien was going at it, we were drowning in garbage hell. It was hard not to feel resentful towards the people who litter. By the end of Day 1, the prospect of spending the next 15 days with Sebastien loomed depressingly ahead like an eternity.
It took Jerome and me another day to get our mental states back on track. We reminded ourselves that we weren’t just having a holiday, but a holiday with Sebastien. If we wanted to have a good time with him, we would have to do better in seeing things with his eyes and living his experience as best as we could.
For a start, we recognised that Sebastien was juggling many challenging factors at the same time. Apart from his struggles with sleep deprivation due to jet-lag, he also had to cope with throngs of tourists despite the shoulder season and an itinerary jammed with historical old towns not only due to their sheer beauty, but also the high costs of Croatia's national parks. Reminding us of this reality helped us to refrain from judging his garbage-picking behaviour and focus on celebrating our positive moments together.
At the same time, we also acknowledged that Sebastien was a young adult who was entitled to have his own priorities and agendas during our vacations, even though they didn’t accord with ours. After all, as an autistic young man without the cognitive capacity to engage in planning the itinerary, he had already had to compromise by accompanying us to places of interest we had selected. Thus, you can say that our accommodations of his preferences were a fair exchange.
In general, we adopted a non-interventionist way. We were always nearby to step in, if needed. However, our default position was to let the situation run its natural course and trust that sensibleness would prevail.
And what was our rationale?
Well, at a practical level, Sebastien is way too big for us to get in his way without worsening the situation. Previously, I had hovered close to Sebastien, perpetually watchful and anxious in constant anticipation that he would do something that would get him into trouble. Whether something actually transpired didn't alter my expectations. It didn't make for a healthy parent-child relationship. As a child, can you imagine how you would feel if your parent was just terrified that you would mess up every waking moment of the day?
Nowadays, I choose to think the better of Sebastien, presuming that his actions would be harmless. So long as he isn’t hurting himself or anyone, we would let go, step back, relax and enjoy our time with him.
This thus means that all of us, including strangers who cross our paths, bear the responsibility of figuring out what it really means to include someone like Sebastien in our midst. The term, "inclusivity", is bandied about so often these days. But I can't help, but feel, that for many, their idea of inclusivity comes with many conditions attached, whether they are consciously aware of them or not. In calling for inclusivity, they would be hard pressed to examine the extent to which they are genuinely willing to accommodate those with atypical needs when their exposure to the likes of Sebastien challenges them to move out of their comfort zone.
These days, because of Sebastien's age and size, his atypical noises and childlike giggles, sudden leaps in the air, and compulsive garbage-picking, he is quickly labelled by passers-by as “crazy”. On our most recent trip, most of the time, Sebastien was the recipient of looks of bewilderment, shock and fear. We parents might also have been condemned in the same breath for our "failure" to raise a proper young man and our "ill-considered" decision to unleash him onto the public. We quickly became adapted to the burning glare of the limelight whenever we were out in the public space.
What these spectators often didn't realise was that from our vantage point, their reactions to Sebastien in turn placed them under the spotlight. From our viewpoints, their perceptions towards Sebastien served as a mirror of their own hearts. And this trip that took us to Istanbul and several cities in Croatia, Mostar (Bosnia) and Kotor (Montenegro) revealed a vast spectrum of the good and bad in humanity. I delve into two extreme examples below.
In Istanbul, a security guard at the Basilica Cistern took the initiative to let us jump the long queue. After seeing Sebastien pick up cigarette butts around a trash can and noting his difference, he defied the protests of others waiting in line to move us ahead and give us a special price of three tickets for the price of one. We never had to breathe a word.
Conversely, a fisherman in Mostar near the famous Stari bridge yelled into Sebastien’s face and poked at his chest aggressively just because Sebastien had continued to drop little pebbles into the river near where he was fishing. Caught up with what he was doing, Sebastien had not even been aware that the fisherman was calling out to him. After all, the place was abuzz with the racket of tourists vying for a good spot to photograph themselves against the backdrop of the bridge. This fisherman did not stop for a second to consider that Sebastien could have some form of special needs. Unlike people in Istanbul who were quick to pick up on Sebastien's difference, their counterparts in Croatia and the neighbouring countries often reacted in annoyance.
Thus, you can say that these glimpses into humanity are the unexpected "perks" that accompany the travel experiences with an autistic young man like Sebastien, who does not hold back in expressing himself. He pushes your buttons and your threshold of tolerance. But if those we had encountered on our trip were to reflect on what Sebastien was doing in a neutral light, they would realise that none of what Sebastien did was inherently bad. In the episode with the fisherman, he was not the aggressor, which only made the fisherman’s reaction so shocking. And if we were to be objective, Sebastien’s high-pitched yelps and giggles (his way of expressing himself), albeit different, were no more disturbing or obnoxious than the loud chatter of excited tourists from cruise ships or the boisterous babble of drunken travellers. And if you really think about it, Sebastien’s preoccupation with picking up garbage could not seriously be considered to be more or less important or significant than the tourists' single-minded pursuit of capturing the best photos of the scenery or monument. So why should Sebastien’s preoccupation be mocked or put down? If they should be disapproving of anything at all, they should reserve it for the pervasiveness of smoking in the region and the rampant littering behaviour. In fact, with his non-conformist ways, Sebastien certainly had his way of shifting our attention to issues that most of us ignore. For instance, there is no doubt that he thrust into our attention the extensive littering of the cigarette butts that smokers throw mindlessly to the ground when he weaved between crowds and groups of smokers, determined to pick up every single one. With his “mission” to clean the world, Sebastien also shone the light on the important role of cleaners — the oft-ignored professionals of our society. Despite his lack of interest in most people, Sebastien always races up to cleaners in any setting, familiar or not, the moment he spots them. Armed with a piece of trash in hand, Sebastien would insist that the cleaners open their dustpans and wheelie bins to receive his "offering". They would never know this, but for an autistic person like Sebastien to want to initiate an interaction not to get anything in return, was a big deal. Little did they know it, but it was Sebastien’s way of connecting with them over a common “activity”. In Sebastien’s eyes, they have the most awesome job in the whole wide world!
Although I used to laughingly dismiss Sebastien's “interactions” with the cleaners as his unique way of immersing in the local culture, I have come to appreciate them as special windows to the varied expressions of humanity, which are at once universal and specific to the local culture. I was reminded of this while watching Sebastien’s interaction with a cleaner at Istanbul Airport, while we waited for our car ride. Even though the airport was relatively clean, Sebastien kept finding pieces of litter and running up to a cleaner to deposit litter in the wheelie bin. From the very start, the little grey-haired man would nod to Sebastien as a sign of gratitude and send him off with a wave, signifying that there was no need to do more. But it was to no avail: Sebastien persisted with his own agenda.
Concerned that the poor cleaner’s patience was wearing thin, I approached Sebastien slowly, hoping to gently persuade him to leave the cleaner to his rounds. At that moment, I caught the eye of the cleaner. Our gaze met. I smiled slightly apologetically towards the cleaner and mouthed "sorry", before realising that he probably did not speak English. But it did not matter; he placed his hand over his heart and smiled kindly towards me. All my self-conscious concerns about Sebastien evaporated. With his communication of the heart that transcended our language and cultural barriers, this Turkish cleaner had made me more welcomed in Istanbul than he could have ever imagined. Thanks to Sebastien, I got to know this man's heart. Somehow, that seemed to matter far more than any breathtaking Turkish icon I could have seen.
Of course, there was so much more to our holiday than Sebastien’s garbage-picking. As a mother, how I wish that these strangers could have seen Sebastien erupt in his delirious giggles from the pure joy of going at high speeds in a speedboat, which would make you sing with joy and break into a silly smile.
How I wish that they could hear his pompous “announcements” of names of restaurants, shops and road signs, as we whooshed past them in our car. But even if they had heard it, they might have dismissed his poor articulation as pure gibberish. Instead, with every sign Sebastien uttered and every one we understood, we celebrated his increased desire to "socialise" with us by sharing what he was witnessing on a road trip that was bringing him much joy.
And how I wish that they could have witnessed that beautiful day when Sebastien deliberately came out onto the balcony of the AirBnb apartment, where Jerome and I were hanging clothes. Instead of lazing on the couch, he told me “sunset” and listed its hues — "red, pink, yellow, orange" — with pride.
It would take me many more days to recognise the momentousness of this event. Though Sebastien, as with some other autistic people, couldn’t care less about sunsets, he knew that I did. And with a mysterious smile playing on his lips, I sensed that he knew what a precious gift he had given me. After that, he stayed on to hang clothes with us, preferring to be in our company than the comfort of the couch. A social connection that came with no strings attached. Wow. A great leap forward.
Finally, for those who were terrified to watch Sebastien approach me and grab me hard by the arm after his horrible encounter with the fisherman, how I wish that they could have known about Sebastien's new restraint. Yes, his initial grip on my arm had been so hard that it had bruised me. As I hugged him and reassured him, I was bracing myself to receive a series of whacks from Sebastien after the heavy dose of malice he had just been administered. Just one and a half years ago, this would have likely happened. Instead, he softened his grip on my arm almost instantly and apologised, “Sorry, mama.” The swiftness of his recovery was something that they could not have appreciated. Certainly, they would not have realised that this hard fought miracle had been three years in the making.
As a mother, my wish is that one day, all these people would truly see Sebastien, my autistic son, with heartfelt eyes.