It goes without saying that parenting is hard, a fact that any parent will tell you, however parenting an autistic child takes a level of resilience and adaptability that cannot be taught in traditional parenting manuals. Personally, this has been one of the hardest parts of my journey that no amount of “conventional wisdom” could have prepared me for.
I’ve always been a strict disciplinarian, shaped by the old school methods my parents used on me which I tried applying early on to my son just like I also did to my other children, however it quickly became apparent that raising an autistic child requires a radically different approach. The tools I thought would shape a well- behaved child – stern discipline, consequences and strict boundaries, only made things worse. Autism, I soon learned, demands a new set of rules.
At my lowest, I found myself in blood soaked pajamas following a scuffle with my son that left me with a burst lip and him nose bleeding. I had completely lost control, we both did…except that I was the adult, the parent and he was only 11. I shudder to think of what could have happened if my other kids were not there to intervene. One of us could have been seriously injured, or worse, because in that moment of pure frustration, shock, fear and exhaustion, I had lost complete control of my sanity!
What followed next was a series of enquiries into boarding facilities as I slumped into deep shame, fear and depression brought on by a sense of failure in disciplining my own child. Not only that, but also bearing physical reminders of a blue eye and a burst lip that I cannot overpower him. The overwhelming shortage of autism boarding facilities added salt to injury as the only facilities worth considering were way out of my affordability range.
During that time, I learnt that the weirdest thing about parenting is that even in the face of such difficult circumstances, which can make you “dislike” your child, the overwhelming love and care you have for them never diminishes and that understanding their challenges is what continuously ignites the fire in you to advocate and fight for their utmost well-being. I believe this also comes with understanding the reality that your child will not always be well received in the broader world due to their challenging behaviours and in that moment, you also understand that the only person that could truly love and care for their wellbeing is the one that birthed them. So, when the world around you is telling you to put him in a centre for “people like him”, you still want all the utmost assurance that your child will at least be afforded basic human dignity and care. The Life Esidimeni saga certainly does not help in curbing this fear.
Over time, I’ve learned the hard way that knowing my son’s triggers and avoiding them at all costs is essential for both of our safety and peace. In moments of frustration, his inability to communicate escalates into aggression and he releases his anger physically through destruction (damage to property) or, biting me – horrible bites that sometimes lead to medical intervention. And when that still doesn’t satisfy his need for release, he hurts himself, hitting his head and limb joints against the wall, or smashing windows with his bare hands. The fact that he has an extraordinarily high pain tolerance renders corporal punishment futile, and I have also learnt, further fuels his anger. I realize this is also why he does not understand how much his bites or grips hurt the next person.
Trying to match his energy or control him through force only makes things worse and so, for the safety of everyone around including him, I’ve trained myself to stay calm in the storm. It’s not easy. The bites hurt. The destruction to our property is devastating. The emotional toll of watching him self-harm is even harder. However, staying calm allows me to defuse the situation slowly and, eventually get through to him.
Discipline, in this case, does not mean punishment. It means survival. It means creating an environment where he feels safe, even in the midst of his rage. It means finding peace in the chaos.
My son thrives on boundaries, but only when they are communicated in a way that makes sense to him. When spoken calmly, with respect, he responds positively. There are days when he will surprise me by doing chores like washing the dishes, taking out the trash and closing the curtains without being asked. These moments remind me that, despite the challenges, he is capable of learning, growing and being kind – on his terms.
I’ve learned that peace, above all else, is what matters in my home. Our relationship is unconventional, and I’ve had to make peace with the fact that the outside world will always have opinions. These are people who have never walked in my shoes. They have no idea what it’s like to raise a child with autism in an environment where resources are scarce and options are limited. It is only myself that knows the inputs and sacrifices that I have made in raising my child. I also know that my child is not “naughty” or “bad”. He is sick…through no fault of his own at that. And so, when the world thinks I’m caving in, I know that I am doing the best that I can, in an absolutely abnormal situation.
Discipline, in the world of autism is not about control. It’s about navigating unchartered waters with compassion, self-awareness and the understanding that every day brings new challenges, and new possibilities.
This is how discipline looks like in my home.
This, is our story.