The Chronicles of Autism: The Day I Stopped Pretending Carers are Superheroes
I often write in these chronicles about the funny things that happen when I’m caring for my grandson who has autism. Thankfully I have many great experiences to share and there have been many small wins along the way worth of note however, there’s another side to caring for a profoundly autistic child that is so very hard. I will admit it can be a challenge to write it down. Why? Because there’s a real fear that in telling those stories I am viewed as less worthy, less capable, and less nurturing and I’m going to take an educated guess that I’m not alone in that fear. Lots of carers feel this tension, it can be suffocating and it is isolating. Because of this tension, I recognise I have a duty to all those hard working and committed carers out there to be just as honest about the hard days as I am about the good days. Bank Holiday Monday was a hard day, it left me feeling less like the super gran of my dreams and more like the demented demon of a nightmare.
The cause? Three hours of chaos, destruction and high emotion. Before this I’d enjoyed a lovely and peaceful Bank Holiday week-end and my wellbeing was registering as fairly strong, and then my grandson came to visit me. I should have known it was going to be tough. He’d got the day off to a great start for his poor mum. In the five minutes it had taken her to hoover the living room of her house he managed to produce enough excrement to cover every step on her stair carpet as well as the glass panelling and his entire face, hair and torso. Why? We will never know why he chose to spread this “joy” but the clean-up job was made no easier as he leapt about, spinning, squealing, slamming doors and making his presence known.
Fast forward to later in the day when he arrives at my home. Within minutes, and I mean minutes, he had pulled the drapes down in my living room, shattering the rail and snapping the hooks. As you might expect we had words about it, because bad behaviour can’t go unchecked, can it? Now I think it must go unchecked, because what followed really was not worth the seconds of temporary relief I may have felt from venting my spleen. Whilst he has limited communication he clearly understood he was not in favour. His response? Well, because he can’t communicate adequately and he has no way of expressing his feelings with words, what followed was a meltdown of astronomical proportions.
What is a meltdown? We use this word in our everyday vocabulary and I find it is often used to describe fairly low-level disruption to our lives and psyche. When we talk about meltdowns in the context of autism it is very different, it can be a cataclysmic event that can result in physical and emotional harm to the individual and to those around them. It is an intense, involuntary response to overwhelming, sensory, emotional, or cognitive input resulting in a temporary loss of behavioural control. Unlike tantrums meltdowns are not used for manipulation but are profound nervous system reactions often involving crying, screaming, or physical outbursts. In our case, and on this day, those physical outbursts presented as self-harm with eye gouging, punching and deeply aggressive, emotional and negative language of self-loathing, phrases like “I’m a bad boy” or “I’m a horrible boy”, none of which is true of course.
A meltdown can last anything from a few minutes to a couple of hours. Thankfully ours was over in about 45 minutes but the toll a meltdown takes on both the child and the carer is brutal. My grandson and I, for very different reasons, were both left wrung out. Four days of restorative rest destroyed in less than three hours and replaced with feelings of guilt, shame and emotional exhaustion as I wrestled to regain control of his physical and emotional needs.
With the benefit of hindsight, I very much regret that I showed him how upset I was about the destruction of my drapes. He in return was clearly full of regret for upsetting me, because whilst he doesn’t have great communication skills he still feels emotion and he can communicate through the medium of meltdown, a cognitive response to an emotion he can’t articulate.
Those drapes are so unimportant to me in comparison to his well-being, and yet the destruction got the better of me in the moment. Why? Because I am human and because the carers of disabled children are not superheroes. When I hear people say this, or I hear them say things like “God only gives you what you can cope with” it makes me want to scream in frustration. It totally ignores the hardship families like ours face. It ignores our human vulnerability; it places carers as invincible when they are not. Carers are often exhausted, over wrought and desperate for help. By labelling carers as having superhuman strength or endurance it suggests carers can do anything – they can’t, some days even the basics are hard. Crucially, it gives the person making the statement and society more generally permission to look away and ignore the systemic failures that leave carers and their loved ones vulnerable, socially isolated, impoverished and let’s be honest on occasion it leaves carers like me battling with the shame of not being enough, not having enough energy, not providing enough.
The real problem with the “you’re a superhero, you’re invincible” or “God only gives you what you can cope with” tropes are that they give people an out. These platitudes allow people to avoid offering to actually help by giving praise instead of practical support, the implication being you are doing something they never could. The superhero label also discourages people in the thick of it from speaking up. Who wants to admit they are struggling if everyone around them is saying how great they are doing? It’s the very reason why writing about these challenges is such a problem for me. In doing so I have to admit that sometimes this stuff is just too hard, and I make mistakes. I am forced to admit that sometimes I am so overwhelmed I allow my frustration to outwardly manifest and because of that failure I have caused unintentional, but entirely avoidable harm to a child I love.
The truth can feel unpalatable, it can be frightening, it can leave us feeling ashamed but it is a truth nonetheless. Next time I will do better, not because I am a superhero but because I am a human.
