When I first met my daughter Amelia’s Occupational Therapist, MM, we spent some time mapping Amelia’s sensory challenges such as how she processes certain tactile, auditory and visual stimuli and the impact these have on her behaviour at different times.
Then MM supplied me with a valuable analogy to help me understand what is it like to be on the autism spectrum and have your senses under constant attack from assailants invisible to the untrained eye (or ear).*
For instance, if I detect a sudden movement – something small and black perhaps – out of the corner of my eye, my heart rate might increase suddenly and my body tense as my brain calculates the risk and makes the initial assumption of ‘spider!’
But if I turn to look more closely at the object and see that it is only a piece of dark paper, disturbed by a gust of wind from the window, my body will relax. My heart will return to its normal resting rate.
The panic will have proved to be momentary only and I will quickly discard this memory as inconsequential.
For most people, this minor example of ‘fight or flight’ is one in a series of challenges to our senses that we instinctively meet, manage and shrug off throughout the day.
The process is more-or-less unconscious, so that our responses to harsh sounds, bright lights and sudden contact do not spin us out of control. We may experience spikes of panic or confusion, but once we understand there is no genuine threat to our person, we can usually go about our business.
For a person who lives with autism, this process is no less subterranean but is it far from instinctively navigated. The black paper ‘spider’ could be among a cluster of sensory events with the potential to build to a screaming crescendo on any given day.
Or not. It need not be so obvious a threat as a creepy, crawly insect (or a moth – now that would be BAD). Amelia might detect danger in a sudden piercing noise or too many people talking loudly at once (often already stress-inducing for a deaf child), the scratchy sensation on her skin from a coarse shirt tag or a knock to her elbow from a fall.
I may not even realise that each of these things has happened to her; Amelia doesn’t always show outward signs when something is bothering her. But internally, her ‘fight or flight’ instinct is most certainly in overdrive and her panic-ometer has spiked into the red zone.
The final straw could be something equally trivial, like a prized object moved ‘out of place’ from its important couch space to the coffee table, but the resulting meltdown is about all of the mini-sensory events that led up to it.
MM’s analogy about autism and the senses taught me to appreciate how differently Amelia’s brain functions to other people. I only wish that I knew how to anticipate or identify the trigger points to her more distressing outbursts.
But at age five, with deafness and a speech and language delay thrown into the mix, Amelia is not best placed to tell us a lot about how she sees, hears and feels the world. I barely know if she has ever had a nightmare or if she is afraid of the dark. Barbie dolls freak her out though – that much I know for sure.
So for now all we can do is try to read the signs, on Amelia’s face or in her behaviour, that there is trouble brewing inside her mind and body. We can’t control her environment all the time but we can start to teach her how to find tiny ounces of perspective in amongst the chaos.
Or how to breathe when she feels so scared and anxious that she sees danger in every dark cloud, even when the sun is just overhead.
*While there are commonalities, not all children on the autism spectrum have the same sensory processing profile. This post relates to the individual features of Amelia’s Sensory Modulation disorder as identified by her OT.