Video-calling Sebastien, My Autistic Son
by Kah Ying CHOO
A "family shot" on February 1, 2021
For the first few years, our thrice-a-week video calls with Sebastien, my 24-year-old autistic son who lives in Bali, would typically last no longer than a minute, if we were lucky:
Jerome (my husband) and I: Hello/Good Morning, Sebastien! H-how- Sebastien: Good morning. How are you? I am fine, thank you. Croissant, banana,... Vitamin C... ciabatta (the inventory of his breakfast items).
Sebastien would rattle off all the responses in anticipation of all the questions that we would typically ask him.
You see, for Sebastien, the spontaneity that makes conversing delightful for most of us is a source of anxiety. His uniquely beautiful mind that memorizes trajectories with ease, enables him to produce abstract paintings naturally, and harmonizes to music/songs effortlessly, struggles to grasp the representational nature of language. As such, conversations are more like a barrage of sounds without patterns of which he could barely understand.
To allay his own anxiety in conversations, Sebastien adopts what I call a "pre-emptive and routine" approach so that he could exert a sense of "control" over the "flow" of the conversation. This essentially means providing responses even before the questions, hence staving off any need for a lengthier back-and-forth exchange. Only when his recitation of his breakfast menu came to an end would he assert "Cia-bat-TA, Cia-bat-TA" loudly, emphatically, and repeatedly to "signal" our turn in the conversation. Essentially, Jerome and I are to respond with a loud "Ciabatta" to reflect back what he had said. See, a kind of a back-and-forth conversation?
We tried changing things up by adding more questions like asking Sebastien, "What are you going to do today?" However, after his frequent confusion that this question wasn't the same as "How are you today?", he decided to pre-empt this question by adding the recitation of the activities for the day, right after his description of his breakfast menu!
It felt like a no-win situation. We concluded: Given Sebastien's preferred means of communication through his body, which really required in-person contact, this virtual communication was no substitute. At that point, we were visiting Sebastien once every two months; so having such short video calls didn't matter.
Then Covid-19 happened. We couldn't visit Sebastien in person — a situation that has now gone on for over a year with no immediate end in sight.
As our sole means of connecting with Sebastien, these video calls began to take on an importance that we could not have imagined. In fact, our transformation of these video calls into 20-minute ones through a series of improvisations testifies to the veracity of this saying: "Necessity is the mother of invention". This proverb that is inspired by Plato's famous quote, "Our need will be the real creator", spurred us into action. Under the right amount of pressure, human beings can be inherently creative.
In fact, nothing we starting out doing was consciously planned. We didn't set out to increase the duration of the video calls. Instead, our repertoire expanded organically, such as bringing Sebastien on a "tour" of the house and lingering at spots in front of the window, where he used to like to look outside or watching me prepare breakfast. Our selection was a bit of a hit-and-miss: quite a few like the ones mentioned were one-off events that sparked little interest.
But others have become incorporated into a repertoire of some kind. The item proceeding after Sebastien's litanies of the breakfast menu and activity for the day is the sharing of the photos of what he did the day before. As our carers send photos of Sebastien's life every day, we could show them to Sebastien on the iPad, make comments, and ask him questions. This has expanded the scope of our "conversation" and introduced a degree of unpredictability, but supplemented with helpful contextual and visual support for Sebastien.
For instance, he got particularly interested when we showed him photos of him making a wooden dustpan with his carer at home. We "conversed" by observing his reactions and asking him what he was doing in the photo, what he was making, and whether it was fun. Based on his intent gaze, his intonations for "Yes", or responses of "dustpan", we could see that it was an experience that had left a deep impression on him.
On another video-call day, we introduced some variety by juxtaposing our outing the day before to the Glass Rotunda of the National Museum of Singapore with his hiking day. We had thought that our spectacular video immersion experience would catch his attention:
That didn't happen: Sebastien barely glanced at the screen. In stark contrast, when we showed photos of his outings, this was his reaction:
There was no doubt as to his opinion as to whom Sebastien thought had the "better" day!
At other times, Sebastien might even have a stronger physical reaction that seemed disproportionate to the images we were showing him. On one occasion when we showed him photos of his preparation of a meal, he pushed his chair back with a huge backward shove and took off from the breakfast table where he was seated.
For a few moments, we were left dumbfounded: where had he gone?
As it turned out, Sebastien had run off to take the green cup (seen in the photo above) to put it on the countertop: apparently, he wanted to symbolically "re-enact" the scene. His reaction informed us of the intensity and depth to which he recollected past events. Thus, Sebastien's excited laughing and rocking, when we once showed him photos of him returning to surfing in the ocean after being deprived for months on end due to the COVID-19 lockdown, made perfect sense.
In watching his broad smiles, delirious giggles, and enthusiastic bobbing on his chair, we could see how he must have transported himself back into the surf not just in his mind, but even in his body, one day after the experience and nowhere close to the ocean!
A routine in our life, which did snag Sebastien's attention, was watching Jerome, my husband, make an expresso with his Nespresso machine. A fan of the workings of machines with their predictable patterns of functioning, Sebastien would gaze with interest at every step of the execution and the predictable release of the precise stream of coffee into the tiny cup. As Jerome has always been a big coffee drinker, "coffee" is an entrenched part of Sebastien's vocabulary. Thus, one can count on Sebastien to chime in with Jerome's exaggerated "celebration" of declaring "coffee" loudly and emphatically, while holding the cup up to his lips, with a look of bliss.
At the same time, I have also re-established our past routine of having Sebastien read books out loud with me via the video call. Even though the duration is, by no means, as long as it used to be, I could have never imagined that Sebastien would have been willing to pull this off via a video call just one year ago. He accommodates all the constraints of a tiny phone screen patiently: waiting for me to move my phone screen across the lines of text on the page of the book and then showing the supporting image. I would pause to ask him some questions about what was read, talk about the words, and correct his pronunciation at times. It is not exactly like the old days, but somehow there is still something nice about the cosy and familiar return to this former homeschooling activity for Sebastien and me.
But nothing captures the depth of Sebastien's emotions more than the panoply of expressions traversing across his face when he is immersed in the diverse music videos we curate for him. For example, when I sent the photos of Sebastien listening to Ray Charles singing, "So Help Me God", to my mother, she opined with a certain degree of helpless frustration: "Aiyoh, he has so many expressions!" It was her way of acknowledging that it was too overwhelming for her to "read" Sebastien's emotions with his wide array of expressions. But, if you step back for a moment and think about it, you could then begin to empathize with Sebastien and understand how our "streams" of words coming from left, right, and center are far more overwhelming for him.
Unlike my mother, I am not at all frustrated. This does not, by any means, means that I am able to interpret Sebastien's emotions. In fact, I am can almost bank on it that I won't get what he is "thinking" or "feeling" most of the time. Strange as this may seem, this is what lends pleasure and fascination to our relationship. These days, I am focused on capturing certain special "moments-in-time". Due to the realities that have essentially constrained my interaction with Sebastien to a phone screen, I find myself all the more invested in studying Sebastien's facial expressions and atypical body language. Now that I am no longer fixated on "getting" Sebastien to communicate with words and sentences, I get to delight in experiencing the mystery of Sebastien's responses to his surroundings — the changing gaze in his eyes, the shifts in his facial expressions, and his unexpected movements — and speculate about what goes on in his mind.
Of course, there are also instances when the somberness in Sebastien's facial expression appears to match the sadness of the song. This was the case when he listened to Bruce Springsteen’s "Streets of Philadelphia" — a song that captures the perspective of the protagonist dying of AIDS. Sebastien did not stop staring at the music video in a relentless state of gravity, which was so finely attuned to the exact sentiments of the music that it was uncanny. Somehow, Sebastien was moved by the unremitting funereal drumbeats of the song, even though he could not have understood the lyrics. But because the sentiment of the song resonated with both of us in the same way, Sebastien and I "bonded" for the duration of the song.
Sebastien's emotions are the most apparent when he "digs" the music. Daniel Powter is one particular artiste, who could get Sebastien harmonizing and "rocking-dancing" rhythmically to his appealing voice and catchy tunes played on a piano 100% of the time.
During the playing of one of Powter's songs, "Best of Me", we lost connection momentarily. When we reconnected, Sebastien looked borderline anxious, as he waited for the music to "reappear". Even more adorable was the fact that he had positioned his fingers just under his chin in a symmetrical fashion, as though he were making a little heart! I had never seen it before!
When I share my excitement about the change in our video calls with Sebastien, people like my mother and friends would often ask me if Sebastien has improved in his conversational skills. Of course, underlying their query is the tacit question: "Is he speaking more words?", i.e., is he going to be able to converse like the rest of us?
These questions and their underlying premises encompass reflect our narrow conceptions of what communication should be, which does not take into account the fact that Sebastien engages in a different kind of communication. And if we think about communication as two communicators taking on equal responsibility in trying to understand one another, then the onus must not fall entirely on Sebastien to communicate my way. Rather, I too must do my part to understand his style of communication, even if it doesn't come easily to me. At this juncture, my ability to comprehend his communication is probably on par as, if not worse than, his use of verbal utterances. So we both have a long way to go in bridging our communication gap.
Despite this status quo and the possibility that we may never succeed in bridging this communication gap in a way that I can only imagine, our relationship today feels more authentic than it has ever been. For it comes from a place of equality, whereby we are connecting with one another in a way that feels true to us. Ultimately, that is the essence of a true relationship, which is something that we should all strive for, whether with our autistic loved ones, but also with others.
What I have come to realize, after more than one year of doing longer video calls with Sebastien since COVID-19 broke out, is the extent to which most neurotypical interactions are so loaded with tacit social scripts that they get in the way of people truly connecting. To this day, I am having to remind myself that video calls with Sebastien do not have to be "fantastic" every time, with Sebastien looking perky and interested. As with anyone, he could be too tired in the morning to summon the energy to be excited just because I am always hoping to "score" a great call on the other side of the line. The truth is that I am the one who "puts on" an energetic and enthusiastic face, even though I am not really a "morning" person and some mornings are harder than the others for me to get going. Now, if I were truer to myself and the interaction, I should acknowledge this and set aside my socialized facade. After all, Sebastien is giving me permission to do so.
Thus, I am still learning from Sebastien how to socialize authentically with him. In the meantime, we can celebrate that Sebastien's growing ease with doing these video call interactions reflects his increasing adaptability, i.e., his state of well-being. This speaks volumes of the progress that he has made and testifies to the life we are constructing for him, with the support of our awesome carers. And until we can communicate again with Sebastien through in person hugs and massages, we should take heart in these improvements during these unprecedented times.
To purchase the book about how Sebastien ended up living in Bali, please use this link (https://www.amotherswish.com.sg/product-page/crowdfunding-pledge-s-30). Thank you very much!