THE UNSPOKEN TRUTH OF MOTHERING A CHILD WITH A DISABILITY

By Porscia Lam | Guest Editor

It’s been four years since surviving our crisis point as a family. It is tempting to look back at those days and tell myself they weren’t so bad, since we’re in a brighter place now, and can just move on. But when I wrote my book, The Unlocking: An Autism Story, I chose not to. I chose instead to share with readers what life was truly like in the deep, dark hole we lived in when my son was diagnosed with autism at age two in the middle of the pandemic. I chose to do that for the reader who might today be me back in 2020; to let them know that they are not the only one to ever have those thoughts.

Let me tell you about my son, Harry. His early childhood was defined by a crippling separation anxiety. The kind that saw me unable to let go of his hand in public to open a door. Sessions with occupational therapists required him to be physically stuck to my lap like glue or be carried around the therapy room in my arms. Harry suffers from avoidant restrictive food intake disorder and still eats an extremely limited repertoire of foods. Instead of hoarding toilet paper during the pandemic, I was hoarding Steggles chicken tenders, the only food that Harry has eaten for dinner for the last four years. It is no exaggeration when I say that he would rather starve to death before he ate a different brand of chicken tender.

We later discovered that Harry has a sub-profile of autism known as pathological demand avoidance (PDA). The simplest explanation that I can offer to this mind-bending disability, is that it is an anxiety-based need for autonomy that is often exhibited by the individual avoiding the demands of everyday living, or by attempting to take control. In a toddler this meant that every act of self-care we tried to perform on his behalf was met with refusal, avoidance or delay, because each such act was a perceived threat to his autonomy—something he guarded like his life depended on it. Each nappy change, hand wash, sunscreen application or the act of clipping into a car seat provoked a life-or-death battle.

Harry’s anxiety didn’t always look meek. Rather than outright refusal or a meltdown, we sometimes saw his anxiety take the form of controlling behaviour. When Harry’s anxiety was on the offence rather than the defence, the full force of his PDA was pushed onto the rest of the family. Harry has a little sister Tessa, just 14 months younger. For the first three years of her life, we were never able to take a child in each hand as we crossed the street, or sit a child on each knee. The simple act of trying to share our attention between Harry and Tessa immediately caused a spike in Harry’s anxiety. He would push her over, hit her or climb up our bodies to attempt to retake possession of us—his parents, his safe people. Until Harry was almost four years of age, we had a rule of one adult to one child, simply to keep the children safe from one another. We lived through a hot summer where my husband was not permitted to wear shorts, because Harry viewed shorts as imperfect pants and refused to wear them himself. Answering phone calls provoked a startling reaction. There was something about the diversion of our attention to an invisible person that was triggering to Harry, so we resorted to taking phone calls from the secrecy of the car.

I do not use this word lightly because my son is still only seven and it seems unfairly accusatory, but the whole family was traumatised by those early years with him. We accommodated, we loved, we tried as hard as we could to help him. Any casual onlooker could see that the pervasiveness and consistency of Harry’s behaviour far transcended the usual toddler power struggle. He simply could not stop himself. And this is where my thoughts about Harry’s disability brought me to an exquisitely uncomfortable point. 

I see what is intended to be captured by the term neurodivergence, because Harry’s little mind really does see and feel the world differently. It most certainly perceives a demand differently! But back then, I just wanted to scream the word abnormal out loud and berate him for not being like everyone else. I confess that sometimes I still want to break him in. I do not always have the strength to face the day as a politically correct neurodiversity affirming parent. There aren’t many of us who find ourselves in the role of special-needs parent, who came fully equipped with all the skills and attributes needed to excel at it.

I have had thoughts of escape. For brief moments these fantasies have set me free, but they came at a price. I carried the guilt for having indulged in them like heavy rocks that pulled me down. I could not talk about them with a friend over a coffee, because what an impossible position I would have placed that friend in to believe that I might be unsafe as a parent.

But our family’s story is a triumphant one, even though complex challenges have made themselves a member of the family. In 2021 we started an early intervention called applied behaviour analysis or ABA therapy. We were lucky to have discovered it, and to have been able to afford it. Among autism experts, ABA is known to be an effective intervention when done intensively in the pre-school years. I quit my job as a lawyer to do ABA therapy with Harry at the recommended minimum of 20 hours per week, and we did that for three years.

For three years his therapists slowly taught him the skills he needed to go into the care of other trusted adults, to wait his turn, to play a game and accept being the loser, to eat a piece of fruit. By 2024, Harry had most of the skills he needed, not just to be school-ready, but to genuinely be able to have a positive experience there. My reward is arriving at school pick-up and being the last parent to leave – partly because leaving is a demand and after all he still has PDA, but also partly because he genuinely loves being there.

These days, when I cast my mind back to life at the bottom of that deep, dark hole, looking up and watching the rest of the world gallop away, my message in The Unlocking, is that those unspeakable thoughts, that desire to escape, are a very human reaction to the prolonged stress that families like mine live under. All those years of schooling and decades of life experience still will not have prepared you for this moment, but when you eventually find the strategies and supports that work for your child, you will see that it was love all along.

MUSE PAPER
ISSUE 03

The Unlocking: An Autism Story was shortlisted for the 2024 Hawkeye Manuscript Prize and published by The Kind Press in 2025.