When your autistic child grieves.

When Your Autistic Child Grieves

As the sun descended over the lush verdant landscape of rice paddies, outlining the silhouette of the glorious mountains in the not-too-distant horizon with its ethereal light, Sebastien, my autistic 13-year-old son, wept. I had inadvertently triggered his tears by bidding farewell to our holiday destination ("Bye bye Malang!") after the train had pulled out of the station. But my pointed farewell was not just marking the end of our stay in Malang, but also the most fantastic holiday in which Sebastien had rose to the occasion not just once, but several times.

The ultimate nightmare for an autistic child and a test of the human stamina, this holiday trip to Indonesia was characterised by sleep deprivation due to expeditions to witness sunrises at spectacular locations and catching an overnight train leaving at an ungodly hour. Roused from his slumber at 3:30 a.m. at Borobudur, Sebastien shrugged off his sleepy self the moment we stepped out of the front door of the hotel and sang to the beautiful night sky peppered with shiny stars. After we were issued torch lights to illuminate our paths towards the Buddhist monument, Sebastien delighted himself by directing dancing beams all over the dark skies.

Just two nights later, we caught a train from Yogyakarta to Malang, which left at 2:15 a.m. Throughout the seven-hour train ride, Sebastien barely slept, as chattering passengers in family groupings boarded the train at various locations and bumped noisily to their seats. At 5:30 a.m., when a DVD playing a religious children's cartoon came on, Sebastien shook off the forthcoming stupor by harmonising with the lively musical numbers and bobbing his body rhythmically.

The very next morning, we set out at 1:30 a.m. for the sunrise at Mt. Bromo, located approximately 90 minutes' drive away. Snuggling into his scarf and the hood of his windbreaker against the freezing cold, Sebastien weaved in and out of the hordes of tourists teeming around the best vantage points to capture photos of the smouldering Mt. Bromo. Two hours later, he scaled the ridges that overlook the crater fearlessly, clambering and sliding along the rims on his pants that became smeared with volcanic ash.

Apart from grappling with prolonged days that started at one or three o'clock in the morning and stretched till nine or ten at night, Sebastien also had to cope with constant changes without any real resting place as we changed towns and hotels every two to three days. However, at each new hotel, Sebastien sought to make himself at home: putting down his anchor by reorganising the room to make sure that his extra bed was pushed up against ours, thus enabling himself to feel some sense of security.

Knowing how challenging each phase of our ten-day journey was, I would prepare Sebastien by giving him as much information as I could about the next phase. While planning for this trip, both my boyfriend and I had feared that these early awakenings would be difficult for Sebastien. Yet to our surprise, Sebastien, in the face of an itinerary and activities that he had no control over, was able to adapt swiftly, find his sense of security and discover joy in exotic locations in unusual circumstances.

What I had anticipated, but not spoken to him about, was the final challenge: the confrontation of the end of the holiday. Certainly, I could not have known ahead of time that he would grieve so intensely for the end of this holiday…

The grief of an autistic child, particularly one who is not particularly verbal, is difficult for a parent to witness. When your autistic child grieves, you feel more shut out from your child's world than ever. At a moment when you feel that you should rush in to comfort your child, he literally pushes you away, turns aside and withdraws further from you.

However, if you just take a moment to step out of your own feelings of helplessness and sense of disempowerment, you may come to acknowledge this reality: Your child's grieving is not about you. It is all about him expressing and coping with powerful and intense emotions – made all the more fearful because of the rarity of their occurrence.

This outpouring of grief needs to be distinguished from the tantrums that autistic children are well-known for. When autistic children throw tantrums, they are trying to manipulate their caregivers into giving in to them.

On the other hand, grieving is stripped of any latent motives. The tears of grief are not shed to pressure caregivers into giving them what they want. Rather, grieving reflects their mature acceptance of the immutability of a sad reality. When Sebastien wept in the train, he was not trying to extend the holiday. He was mourning for the end of a fantastic holiday. Sebastien's tears of grief were something that he would have kept at bay, had he been able to suppress them.

In spite of their best efforts and intentions, autistic individuals can become so engulfed by their grief that they weep openly. In these instances, they are coping with an overwhelming onslaught of heart-wrenching feelings and accompanying physiological sensations that are wreaking havoc within them. During the process, they learn to confront this experience of loss on their own and emerge from it with newfound maturity and understanding of themselves and life.

Grieving is challenging for all of us. But it is especially so for autistic individuals who are unaccustomed to experiencing such powerful emotions, as well as expressing their emotions in words. Thus, their grieving is an intensely private affair. Because they cannot be comforted by others, they have to harness all their energies towards surviving this storm on their own, none of which can be diverted towards interacting with their loved ones, even to receive solace.

While it is hard for us parents to see our children go through the grieving process on their own, grieving is not a bad thing for them. As parents, we have to come to terms with our discomfort and let go of our need to shelter our children from the painful realities of life. This is a vital experience of growing up for everyone, including our autistic children. Yes, even our autistic children should have the chance to learn how to come to terms with things not going their way and take responsibility for their own emotions. And yes, even our autistic children can mature and grow up.

Out of this grieving process will come a sense of strength and pride that they are able to survive the emotional maelstrom on their own. With more and more experiences of emotional storms in their bags as the years go by, their faith and trust in their own ability to survive the toughness of life's challenges will also grow.

Finally, if you have worked hard enough in your relationship with your child, you need not feel completely shut off from him/her in these moments. Although your child may not have the words, you have the knowledge and the language to weave together the poignant, but beautiful, story of the source of his/her grief and have an inkling of what he/she is going through…

…Once I let go of my guilt for triggering his grief and admitted to my helplessness in changing the situation, I rested my head back on the train and pieced together my speculations of what was going on behind the scenes in Sebastien.

In my mind's eye, Sebastien's emotional maelstrom stems from his acceptance of the inevitable ending of an amazing and extraordinary trip that tested and pushed him to the limits. Intermingled with his sadness is fierce pride, along with immense relief that he had overcome all these obstacles and come through with flying colours. He was just as pleasantly surprised, as we were, that he was strong enough to cope with the erratic changes of his routines.

Perhaps, he also felt an intense connection towards me, and also my boyfriend whom he once regarded with hostility as the usurper of his mother's affection. Throughout the trip, he placed a strong emphasis on the three of us as a collective entity, making sure that we stayed together when sightseeing, or running errands like buying tickets, as well as arranging our backpacks. Though my boyfriend and I had pushed him to the limits on the trip, he had tremendous trust in us that we would not push him beyond his sanity, as we incorporated breathing space and respite for him to recharge at different junctures. He could see how we thought about him and strove our best to incorporate such moments of sanctuary for him, wherever possible.

So instead of feeling bad, I marvelled at the rivers of tears streaming silently out of Sebastien's beautiful eyes. To me, it was truly one of the saddest and the most beautiful sights to behold, because such moments are rare and thus precious. Not since 2005 when we moved out from the apartment that Sebastien had cherished had I seen him so racked by grief. Back then, Sebastien unleashed heart-breaking wails behind closed doors in his bedroom every night for one week and moved on with life.

This time, from my rare vantage point, I got a glimpse of the vast reservoir of feeling that resides within Sebastien. In spite of his seeming indifference to others and his weird mannerisms, Sebastien sees and feels just like any typical person, perhaps even more. And as a parent, I feel infinitely privileged to be a witness, up close and personal, to Sebastien's revelation of his fragility and… humanity.