Working with Purpose: For My Autistic Son's Sanctuary
It's been a LONG while, since I've written a blog post or even continued with my serialisation of my book, Where Does My Autistic Son Belong (please check out the latest chapter). Nonetheless, through my free individual counselling, I have finally succeeded in getting through to two parents. It is deeply gratifying to see these parents forge authentic relationships with their autistic adolescent and young adult children who are on two extreme ends of the autism spectrum.
Ultimately, the challenge with interacting with autistic individuals isn’t whether it is possible to have meaningful interactions with them, but whether we can transform our mindsets to enable the relationships to develop.
Once the parents have stepped across the threshold of understanding, the connection is pure magic.
But back to the original question:
So why have I stopped blogging?
Well, in a nutshell, I was snowed down with work for a couple of months. It's a big deal for me: as a freelancer who can't count on a stream of work, experiencing a gushing torrent of work is something that I am deeply grateful for. At the same time, I don’t get to pick when and how much work comes in; typically, I find myself slogging hard for about two months at a time in order to make up for the leaner times that inevitably come.
And it has taken me a couple of decades of working in the field of writing and copyediting in Singapore to arrive at a position of earning decent money in a field that is arguably one of the worst-paying white-collar professions. This has meant encountering clients and friends who could appreciate what I bring to the table and the effort it takes to exercise the critical thinking to craft together and/or elicit (through copy editing) a meticulously and intentionally written piece of work.
Nonetheless, as I felt increasingly challenged in my navigation through my workload and sought to push myself to keep up with it, I was tempted to just say “no.” It was very much within my prerogative and certainly one of the privileges that I get to exercise as a freelancer.
But I didn't. This is because...
...my pursuit of my freelance work is infused with a deep sense of purpose that goes way beyond a personal sense of accomplishment. In fact, it is intimately related to my autism mission in various ways.
In the short term, my work is supporting the existence of our ever-evolving, self-constructed ‘Bali Bubble’ for Sebastien, my now-26-year-old non-verbal autistic son. Thanks to the 'Bali Bubble' — a rustic, familial setting, comprising carers who are focused on him as a human being (rather than a human doing) and sensory activities that engage him, Sebastien is discovering his potential on his terms.
My commitment to my work has also been deepened by the struggles with the aches, pains, and peri-menopausal symptoms — they are a constant reminder that the years are creeping up on me and my working years are dwindling. The call of mortality is an ever-present thought at the back of my mind. As with every parent of an autistic child who will not be able to be financially independent on their own, I am also planning for a time when neither Jerome, my husband, nor I would be around for Sebastien. Therefore, the need to accumulate sufficient reserves, as the clock ticks away, feels ever more urgent.
In seeking to preserve the Bali Bubble beyond my own lifespan, I am also conceding that the world I am leaving behind will NOT likely enable someone as neurodiverse as Sebastien to live fully in its midst. Until the day our mainstream society can truly be open and creative enough to embrace a full spectrum of ways of being, we will always be excluding and marginalising special groups of people. This is more a reflection of our neurotypical limitations and rigidity than any inadequacies on the part of our neurodivergent counterparts.
Of course, it does not mean that I have given up on A Mother's Wish's mission to promote an accurate understanding of nonverbal autistic adolescents and youths so as to prevent or mitigate the unnecessary meltdowns that are hurting many families, schools, and society, and especially the autistics themselves. My commitment to Sebastien’s sanctuary and its existence, not to mention my discourses with families, drive me to keep AMW’s mission going.
To this effect, I have written to the Prime Minister's Office to propose solutions that involve changing the prevalent approach of interacting with autistic individuals through retraining caregivers and professionals. Ultimately, in order to be effective in helping ALL families on the autism spectrum, particularly those with non-verbal autistic adolescents and youths, we need to adopt an approach that is focused on understanding their inner well-being. This will mean creating a genuinely INCLUSIVE society that can not just accommodate our autistic loved ones, but also celebrate their neurodivergent attributes.
At the end of the day, being non-verbal and autistic is not lesser; it's just different.