Before Victoria’s diagnosis I’d never really noticed kids wearing ear defenders. I probably just assumed they were large, very colourful, wireless headphones! I now know that many children with autism have enhanced or reduced senses and it is something that has fascinated me for a while partly because I cannot being to understand why it should be so.
For Victoria we believe this manifests itself in several ways. I say this as in some cases we don’t really know what does and doesn’t affect her, and she is usually unable to tell us in a coherent way. But there are a couple we certainly know about.
Loud noises is the common one (hence the ear defenders). A loud car going past, a banging firework or Emily shouting all leave V reaching for the ear defenders. She just cannot tolerate such loud noise, but then neither can a lot of people. However for her it will often lead to sensory overload followed by a meltdown (see the post in 5 days for more on meltdowns). Anything that sounds like a loud noise is a problem too so a distant bang (eg from a bird scarer on a distant farm) makes her think of fireworks and question “what was that noise?!”. What noise… I didn’t hear anything!
Something less common is that it’s not just “loud” noises. The sound of nail clippers clicking as you trim your nails has a similar effect on her for reasons I simply cannot fathom. Only using nail clippers when V is out of the house is one of the many, many subtle but important changes Rebecca and I instinctively make day in day out to make V’s world that little bit more comfortable. I’ve been told by somebody else I know with autism that they feel like they are in a noisy pub all day every day, where the hum of the air con, the tweeting of a bird outside, a child laughing down the street and the person you are currently talking to are all at the same volume, making it a real effort to listen to a conversation. It sounds exhausting.
A large part of having autism for Victoria is dealing with sensory overload on a continual basis, and the examples above show how loud noises and “clicky” noises and quiet noises and who-knows-what-other-noises impact heavily on Victoria’s wellbeing. She’s not a fan of complete silence either… we can’t really win this one!
But it’s not just sound. Everyone that meets Victoria comments on her long beautiful hair. But the simple act of brushing her hair causes her massive amounts of “pain”. I use quotes as it is hard to explain, but she shows all the signs of someone wincing in pain with every brush stroke. This isn’t a kid moaning that they hate their hair being brushed – this is putting your daughter through immense pain carrying out a simple act millions of people do without fuss every day.
Touch is a big deal. Seeing your child overwhelmed, not breathing, eyes looking towards the sky, mouth open as if struggling for air whilst simultaneously frozen and unresponsive would be shocking for any parent. This happens every day when drying Victoria after a bath or shower. It’s strange writing this down now realising how normal we’ve made the abnormal.
Temperature is another of the senses that often doesn’t quite work in people with autism. Luckily not so for Victoria but many will be unable to tell when something is very hot or very cold. Hold on… I thought there were only 5 senses? Something else we learned on this journey – there are at least 9 human senses, possibly more than 20, and all of them can be a bit off in those with autism!
This is just touching on a massive subject I am in no way qualified to write about. But if you’ve managed to get this far then hopefully you’ll realise the point of this post is simple: people with autism not only see the world very differently to the rest of us in terms of their perceptions and thoughts, but their physical senses we take for granted… taste, touch, smell, hearing, sight, balance, temperature, pressure, pain… all come together in different ways to make the world quite different, and often quite painful, for someone with autism.
Of the 5 main senses, I forgot to mention that Victoria has an exceptional sense of smell and no filter to stop her publicly shouting that something “stinks”. Thank goodness we now have a dog…