What Does "Inclusivity" Really Mean? — Where Does My Autistic Son Belong? Book Launch
My latest book, Where Does My Autistic Son Belong?, had its official launch at the National Library yesterday.
Big thanks goes out to:
The National Library Board, particularly Verena, Siew, Kavita, and Soon Huat for helping to host this event and providing us with the free venue;
My wonderful helpers for the day — Jerome (my husband), Casey (my sister), Iris and Sapna; and
The audience who showed up on a Saturday morning, listened attentively to my book reading and posed illuminating questions.
Here is a little sample of the content covered:
For months, I had wrestled with how I wanted to encapsulate this multi-faceted book. It occurred to me that "inclusivity" was a perfect theme that matches the story of our quest to find a place where Sebastien, my son, could be happy.
Unfortunately, for a lot of us parents of autistics, the conventional notion of inclusivity towards autistics is often conditioned upon their capacity to conform to mainstream norms. Essentially, if they could behave properly, they could be included. This is because autistics' differences from us are invisible to us due to our lack of understanding of their functioning. Thus, we neurotypicals make no or inadequate accommodations for them. Instead, in our one-side relationships with them, they are expected to comply with our expectations. When they do not do so, we judge them as failures. And we wonder why they don't want to relate to human being or make eye contact with us?
You see, where my trouble began with Sebastien, was that I had striven to get him "ship-shape" for the mainstream world by using behavioural management. At the book launch, I shared snippets from the book that chronicles our struggle of raising Sebastien who exploded in aggression and self-injury when he turned 15.
All of a sudden, the accumulated weight of all that had transpired over the past Sebastien’s meltdowns had melded into a blurry history of head-banging a noodle machine, and even the wooden frame of a kitchen cupboard under the sink. The skin from the top of my head down to my feet, particularly my arms, had been etched with faint traces of past scratches, bumps, and bruises, and then covered over by more recent ones. They served as a visceral chronicle of my heartbreaking struggle with Sebastien the young man. Each incident only portended the next one that threatened to be even scarier and more out-of-control than before. When would it all end?
I wouldn't know it then, but this was the consequence of more than decade of managing his outward behaviour without paying attention to his well-being or our relationship.
Things got so bad that we embarked on an extraordinary pursuit of forging a separate life for Sebastien overseas. It wasn't easy, but after two no-goes with two places in the Philippines, Sebastien gave us his blessing when we honed in on Bali. And when everything was going wrong with this option, Sebastien would be the one to give us his blessing:
In the face of our current bleak prospect of finding a carer and an in-person work commitment that I had in Singapore in mid-September, we decided that the most sensible thing was to postpone any move till after September...
With a book in hand, I stepped out of the room with a big smile and plopped myself next to Sebastien on the big cushion next to his, for our reading-out-loud session. But before Sebastien opened the book, he spoke, "Indonesia. August."
I swallowed hard. Sebastien’s words took me by surprise.
It was vintage Sebastien. With just two words, he had simultaneously given us his blessing for the Bali option and turned it into a Bali solution...
For someone like Sebastien who did not use his words to discuss serious matters, this was a big deal. At an emotional level, I felt an incredible sense of lightness and happiness. All this time, I had been the one who had been pushing for the overseas option without getting any input from Sebastien; it had been my initiative.
But, at a time when I was floundering in indecision, it would be Sebastien who was taking a courageous and determined stance to force the issue. Furthermore, by setting a deadline, he was propelling a prospective idea into the realm of concrete reality...
Through pure luck and hardships in our encounters with individuals who would influence our lives in Bali, we were able to transform our relationship with Sebastien and improve the quality of life for him in Bali. One of them was Dr. Antonio Rinaldi (Dr. AR), an Italy-based clinical psychologist whom Sebastien met in a fortuitous encounter:
What Dr. AR enabled me to realise was how challenging it is for autistic individuals to live in our mainstream society. In simply expecting autistic individuals to conform to our norms, we have simply judged them based on their external behaviour without getting to know them from the inside. As a result, we are blind to the reality that autistic individuals are profoundly soulful beings with an extraordinary capacity for survival. In a hostile world that fails to understand them and ignores their inner world, they have often been the ones who have sought to reach out to us in the best way that they knew how. Yet, we with our narrow mindset of what is supposed to be, have remained closed to them and rejected their
Contrary to what is widely perceived, none of the behaviours of autistic people is "strange"; instead, they are perfectly logical responses that have enabled autistic individuals to survive. Faced with the same set of extreme circumstances, most of us neurotypical beings would have given up and surrendered to the hopelessness of our situation. But not them.
There would still be many more ups and downs and things for us to get right after this encounter before we would see the glimmer of hope at the end of the tunnel. But we are beginning to see it...
To read more of this compelling story: Order a copy at https://www.amotherswish.com.sg/shop
All net proceeds go towards A Mother's Wish's mission to support families struggling to raise their autistic children.