Sensory Issues Aren’t Always What They Seem

I feel like, by now, autistic sensory issues are pretty well known.  If you are autistic, you’re intimately familiar with GoodFeel/BadFeel, food textures, etc.  If you’re a parent of an autistic kid, you know certain sounds, smells, and textures are great and others Must Not Be Allowed.  Knowing these issues and how to work around them is key to thriving as an autistic person in the NT world.  So here’s a tip for parents (and anyone else working on figuring out their sensory issues): sometimes sensory issues aren’t what they seem.

Years ago, long before I received my diagnosis, I was talking one day with a lady who worked in my building.  She mentioned that her young ND son (maybe 8 years old or so?) refused to use soap when he bathed and she didn’t know what to do about it.  She said they’d tried changing scents, using unscented products, body wash instead of bar soap, everything they could think of, but still he refused to touch it.

I didn’t have the vocabulary or the thought process at the time to explain it to her, but I kind of instinctually understood.  Here’s what I would tell her if we were having that conversation now:

The worst part about most soaps and body washes for me is that they either dry out my skin or leave a residue on me and either of those things makes everything I touch feel weird/bad/Not As It Should.  As an adult, I’ve found a few body washes, hand soaps, etc. that don’t mess with my tactile perception and I only buy those.  In public, where the soaps are inevitably antibacterial and harsh, I carry one of the two hand lotions I can use that don’t make things feel weird to the touch and I use that after those soaps to mitigate the effect.  Also, as an adult, I can force myself to wait it out while my skin recovers, highly unpleasant though it is.

But when I was a kid, it was easier to just sit in the tub until my fingers got wrinkly – my skin came back from that faster than it did from the soap (I still couldn’t bear to touch anything for about an hour after a bath, anyway). 

This is a great example of how you have to look beyond when dealing with autistic kids.  Just as behavior is never just one thing, a sensory issue may not be about the immediate experience – but about the Result.  If your kid can’t explain to you because of lack of vocabulary, lack of understanding, or being non-verbal, you have to think further.

Refusal to use soaps could be about how it makes everything else feel afterwards, instead of about slimy texture or an offensive smell.  An autistic child might refuse a certain food, not because of the texture or taste but because it gives them gas or diarrhea (we are very prone to digestive issues but they might not tell you – I never told my parents).  Or that food might always be served with something else that does that and they’ve decided it’s guilty by association. 

I refused all grilled cheese sandwiches for about 12 years because in the third grade I fainted after taking a bite of one.  I wasn’t that fond of cheese at the time anyway, and I associated the taste with the feeling of dizziness and the moment my vision greyed out.  So I just said I hated grilled cheese for years.

It won’t always be easy to figure these things out.  Sensory experience + result = other sensory experience is an equation with millions of permutations.  As a parent, the best thing you can do is give your child the vocabulary to describe things.  Offer them ideas – Does it taste bad?  Does it smell too strongly?  Does it make your tummy hurt?  Does it make your head hurt?  Does it make things feel strange when you touch them?  Does it make your skin feel weird?  Does it make you dizzy?  There are lots of options for describing a sensory experience other than just “good” or “bad”, but kids often need those words modeled for them before they can learn to parse the feelings out on their own.  If you’ll open your mind to think further than 1 sensory experience = 1 result or behavior, you may find solutions to more struggles and give your kids more tools to navigate this world.

A child's hands, covered in paint, holding a rag that's also soaked with various colors of paint on a paint-stained table. White and blue text on a purple background reads "Sensory Issues Aren't Always What They Seem"

Do you have other examples of a sensory issue being about the result instead of the immediate experience?  Do you have any sensory aversions that come from “guilt by association”, like my thing about grilled cheese sandwiches (I also have an issue with anything that smells like coconut, because of the sunscreen we used as kids)?  What’s the best way you’ve found to help kids describe and narrow down their sensory reactions? 

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