Defence against the senses (and my one chance to reference XTC)
Finding out that your child has an autism spectrum disorder (ASD) is a bit like reading the last page first in an Agatha Christie murder-mystery.
Through the big reveal, you might learn ‘who dunnit’ from Hercule Poirot or Miss Marple, but you can only guess at the what, how or why of the events leading up to that moment.
By this, I’m not referring to the missing pages of cause and effect that remain hidden behind my daughter Amelia’s latest diagnosis.
To me, the pursuit of causation seems like a completely fruitless and time-wasting preoccupation when emotional and intellectual energies need to be spent in much more constructive (and urgent) ways.
Searching for some random reason to explain what caused Amelia to be born with a disorder that some refer to as ‘atypical’ neurology, is about as helpful as locating a needle in a haystack only to find that the eye has rusted over and you have no cotton to thread anyway. And you really hate sewing.
What I mean is that we have an answer to one big question (is it autism?), but we are no closer to understanding the associated behaviours, to knowing why our daughter finds aspects of her life so difficult, or how we can help to ease her passage through life.
The bigger mystery than autism, which was not really an unexpected narrative twist for us (though no less painful), is the triggers for the autistic behaviours, like her meltdowns and hyperactivity.
But there are clues. You don’t have to be as clever as Poirot (or have such an impressive moustache) to read signs of significance in the way Amelia acts in certain situations and not in others to begin to draw some amateur sleuth conclusions.
Take, for example, her almost textbook behaviour as the ‘compliant child’ when she attends kindergarten across three days of the week. She is able to follow routines, generally does what is asked of her without complaint, actively participates in activities set up for her and does not act out at all.
Amelia the kinder-goer is the very model of a cooperative, well-behaved and calm child. That is not to say that her personality is subsumed by this conformist way of being. She’s not a robot; her independent spirit is detectable beneath the surface, but it seldom comes out to disrupt play.
It is simply that she is working very hard to observe and puzzle out the rules of the kinder game. I think there is security for her in knowing what to expect of this environment and what kind of behaviours are expected of her. Following an explicit routine and the lead of others provides her with a perfect map for fitting in.
Sometimes Amelia’s teachers spot her in a corner, silently acting out play she has seen performed by other children, or she signs conversations to herself. It’s like a dress rehearsal before she decides to step onto the real life stage of social interaction.
This mostly compliant version of Amelia is not, however, the child that I take charge of at the end of her kinder days. The moment I pick her up she switches gear into full-throttle girl, almost like the sight of me or the touch of my hand releases a pressure-valve inside of her.
She throws off her cloak of flexibility, of quiet observance and obedience and lets her wild hair down in the carpark.
It’s a battle to get her to notice, let alone watch out for, the buses, cars and people as she dashes ahead of me, heading for the two giant volcanic rocks that reside in the garden near the carpark. Her hometime ritual – and it is the same everytime – sees her scale each one and leap to the ground before we make it to the car.
More than half the time, our journey home will be punctuated by an epic screaming fit in the back of the car. On the surface, the spark that lights these fiery outbursts is my failing to ‘get right’ something that Amelia wants to tell or ask me, like naming an object for her that she can see (but I can’t), interpreting a hard-to-understand question or retrieving a toy that has fallen beyond her reach (I prefer a ‘two-hands-on-the-wheel’ approach to driving as I don’t want us to die).
It’s a miracle we haven’t crashed many times over, but I’ve become quite skilled at blocking out the resultant shouting and flailing from the backseat and dodging the toy missiles aimed at me in the front. Amelia is a Jonty Rhodes in the making, you know, if the wicket is my head.
Sometimes the afternoon will continue in this upsetting vein, as her rage spills from the car and into the house until we’re both emotionally spent.
But what’s really going on here? I used to think the X-factor was all me, the ‘bad’ mother. I knew how well-behaved and engaged Amelia could be when I was absent, so naturally I associated her meltdowns with my way of parenting her.
Now, I’m beginning to see things differently. Ellen Notbohm (mother of sons with autism and ADHD) writes that for many children on the autism spectrum, sensory perceptions are disordered and can become overstimulated in certain situations.
These children can be deeply sensitive to the ordinary sights, sounds and sensations of daily life and feel under siege in environments where their senses are likely to become overloaded.
Bright lights, loud music, pungent smells, certain textures on the skin, all can combine to push the autistic child over the edge; it’s just too much sensory stimulation for their brains to sort and filter.
Imagine the impact of this often stressful way of receiving signals from the world, and then picture Amelia at kinder, a setting filled with competing stimuli and demands, where she spends between six-eight hours at a stretch.
It is remarkable to me that she is able to cope so well with these days, to try and understand what the rules are, figure out how to behave and to remain composed while her senses are working overtime.
Amelia’s paediatrician, KS, offered further insights into just how great a feat it is for her not to unravel during the kinder day. Because she is deaf, Amelia’s brain is already highly taxed by the effort to listen, hear and translate the sounds coming at her through her hearing aids.
Despite her deafness, she seems peculiarly, but not uncommonly sensitive to certain loud sounds. Amelia has started to say “too loud” and hold her hands over her ears when music blasts out of the PA at kinder.
Our one disastrous attempt to take her to a cinema had to be abandoned quickly. The music was so intensely loud and she couldn’t stand it, tearing her hearing aids out to find some relief. That’ll teach me.
It pays not to assume that a deaf child cannot be hypersensitive to sounds of a certain pitch or frequency, especially if autism is in the neurological mix.
With these new ways of understanding just how difficult everyday life can be for Amelia, it is no wonder that when she is released from her kinder day and the pressure to comply and cope with the situation, that a meltdown is so often the result.
It’s like that feeling you get when you come home from work and you close the door behind you, kick your shoes off and expel the effort of the day from your lungs. Home is a sanctuary, and you don’t have to pretend to be polite or obliging or anything other than your true self.
Again, our paediatrician gave us some reassuring advice on this score. She told us that it is precisely because Amelia feels so safe with us, so loved and protected, that she can exhibit her most challenging behaviours without fear of the consequences.
We provide the sanctuary for her to kick her heavy shoes off, and hopefully duck at the right moment should they fly towards our heads.
Now we understand a little bit more about the potential impact of specific situations on Amelia’s behaviour, it is important to be mindful about just how intensely she’s working to defend herself – either through detachment or anger – against a sensory chaos that is beyond her control.
The mystery might be incomplete, but we take this emerging knowledge about our daughter as a reminder to be ever-compassionate for her struggles, even on the toughest day in the hardest week.
Because the tiniest hint or evidence of Amelia’s need and love for us, even when her hands and voice seem to push us away, is greater than any big reveal delivered to us on the final page.