November 15, 2023

Sensitivity and sensory defensiveness aren’t the same thing

Posted in Uncategorized tagged Autism, Culture, Disability, Neurodiversity at 10:44 am by chavisory

Here are some sensory experiences of mine that will probably sound familiar:

I’m extremely sensitive to my clothing—to whether it sits right, falls right, to the texture, whether it’s too rough, itchy, or fuzzy. Too tight or too loose. Collars can’t fit too close around my throat (turtlenecks are right out), sleeves can’t be too loose around my wrists, and until relatively recently, nothing could fit snugly around my waist. Most women’s dress shoes are entirely off-limits to me, and of course I have to remove the tags from almost everything.

The smells and textures of common foods that nearly everyone considers pleasurable or inoffensive are intolerable to me, in particular scrambled eggs, oatmeal, tofu, Jello, and puddings. Spaghetti I couldn’t cope with until I was an adult.

I’m easily noise-overloaded, especially by sudden loud noises, certain pitches, and “chaotic” noise—things like microphone feedback, babies crying, helicopters, motorcycles, leaf-blowers and horns honking, dishes or silverware being slammed or dropped, people playing games or music on their phones without headphones, who don’t realize how loudly they’re laughing, even the particular cadences of some people’s voices.

I’m intensely distressed by particular smells—to the extent of having had my career plans affected when I was younger.

Given this series of facts, here’s something that might surprise you: I’m an intense sensory-seeker.

The autistic community has recognized for a long time that hypersensitivity—to eye contact, sounds, touch, and texture—isn’t the only way our sensory perceptions can be atypical, although it’s probably the most commonly described. We can also be strangely hypo-sensitive to certain sensations, including pain, and hyper- and hypo-sensitivities to different stimuli can even occur in the same person. That it’s probably more accurate to describe autism as hyper-specificity of experience, more than hyper-sensitivity.

However, a tendency has emerged, which I believe originated from the framework of occupational therapy, to use “sensory-seeking” or “sensory-defensive” as proxy terms to describe somebody’s level of sensitivity to sensory input…possibly as a work-around to avoid describing a child’s sensitivities or perceptions as wrong in and of themselves. Roughly, that someone is “avoidant” or “defensive” of sensory input to which they’re very sensitive and “seeking” of input they have a hard time getting enough of.

And these categorizations can be roughly true, but they have the potential to be misleading, and flatten a lot of autistic sensory experience. While we tend to use “hypersensitive” and “sensory-defensive/avoidant” as if they’re different ways of describing the same thing, I think they’re actually two fairly different things, which can align, but don’t necessarily, always do.

I think that whether someone is seeking or avoidant of sensory experiences, whether in general or of particular kinds—is a temperament, an independent variable, and while possibly a signal as to what kinds of input their nervous systems are attuned to in certain ways—not a reliable or direct correlation with how sensitive or insensitive someone is to stimuli.

I.e., someone can be highly seeking of sensory input to which they’re nonetheless very sensitive.

And while there’s a stereotype that’s emerged of a sensory-seeking child as one who throws themselves into walls or off of furniture to get tactile or proprioceptive input they have a hard time getting enough of in more typical ways, I think sensory-seeking behavior may look very different for children who crave types of sensory input to which they’re very sensitive, rather than the reverse.

So for instance…If my shoes and socks aren’t just right, it will ruin my day.

But I also love the feel of sand, soft grass, and warm stone under my bare feet.

I actually love loud concerts. I love overpowering aural experiences—when the acoustics of the space are good, the mixing is right, and I know the audio engineer isn’t going to hurt me. One of the coolest experiences I got to have this past year was sitting in on a live performance of Steve Reich’s “Music for 18 Musicians” and Julius Eastman’s “Gay Guerrilla” on four pianos in a big orchestra room. I love a lot of weird modern music that other people find dissonant, unpleasant, or boring.

…But I have to wear noise-canceling headphones just to walk down the street in my neighborhood or ride the subway. The experiences aren’t the same, and the kind of stress they impose isn’t, either. I can be hurt badly by things that other people can’t hear at all.

Conversely, because I am very sensitive, there are relatively faint or subtle sounds that I particularly enjoy, and crave or seek out, that other people might not even notice. The sound of wind moving through trees, soft rain, insects in a field in summer, even snow falling. The sound of a match extinguishing when you put it in water.

I’m actually an adventurous eater and I have a broad palette. I love spicy food. I love trying new recipes and counterintuitive flavor combinations. I love poke bowls, sushi, and fresh fruit. I find it interesting to play with contrasting flavors and textures in food because I am sensitive to them.

Being tickled or lightly brushed is completely intolerable, as well as slimy or sticky textures, but I love tight hugs, deep massages, snug sweaters, swings, and trampolines. I don’t even mind the sensation of being tattooed that much. I would, in fact, much rather be tattooed than endure a lot of sensations that other people seem to find benign or even pleasurable. On vacation on the Gulf of Mexico last summer, I loved standing in the water and just letting waves hit me in the chest, one after another.

Lately I’ve been working to connect what is actually going on in my life with why I feel drained or exhausted more than it seems like I should, and have been learning to remind myself that even things I enjoy deeply and get a rush out of, take a toll on me that they do not for most people. I like writing in bars, I like concerts at the Beacon, I like attending baseball games with friends. I like traveling and trying new things…I like the intensity of those things…and that intensity is physically more costly for me than for other people.

Whereas compared to all of the above, things that I’m not that sensitive to are not things that I’m either avoiding or seeking out, because they just don’t hold my attention or occupy that much of my mental landscape.

I’m also wary of the ways in which considering seeking/defensive as coherent sensory or behavioral profiles unto themselves can get repurposed into some of the same old sex and gender stereotypes we’ve been dealing with for a long time.

Because the fact is that the little girl on the right might need to be crushed, thrown, spun, or swung just as much as the little boy on the left.

But if she hates being tickled, or is sensitive to the feel of the seams in her socks, she’s much less likely to get those needs met if other people interpret those flags of sensory-defensiveness as indicating that she doesn’t need or crave intensive sensory input.

And a little boy with a temperament or sensory profile more like the girl on the left might be at risk of not being identified at all if he presents as having what we’ve come to see as “female” autism instead of as the kind of rambunctious, physically fearless boy who’s become a certain stereotype of how boys “present” as autistic, or as sensory seekers.

Tumblr user annabelle-cane also makes the excellent point that many of us spent our childhoods having our boundaries routinely violated, and that can make it difficult to separate whether we dislike an experience from whether it feels threatening simply to step outside of a comfort zone. Willingness to try new things can have a lot to do with our sense of safety and control over our environments and sense of autonomy in general.

It’s easier to be brave and to be open to experience when you feel supported in drawing boundaries or in your ability to back out. It’s easier to decide to take a risk, try a new thing, even learn a new skill, if you know that doing so won’t result in loss of autonomy or control over your environment. If you know it won’t be used against you or lead to a subsequent escalation of demands—on your time, energy, or sensory tolerance—that you don’t know whether you can handle.

That you can try something and realize it’s too much or you don’t like it and be able stop or leave. Or that you like it but your threshold for it is limited. That no one will decide that you should always be okay with it or say “See, you can do this all the time now!” or that if you can do that, you should be able to do other things that aren’t actually similar.

I have to wonder how many kids are being labeled as being “sensory defensive” when that’s not necessarily what they’re defensive of at all. I think it’s possible, even likely, that a lot of sensory-seeking kids are being labeled as the opposite, or suffering a lot of frustration from unmet needs for sensory input, because to even seek out or ask for those experiences, risks having your limitations disregarded or steamrolled going forward.

In much the same way as people seem to want to divide autistic people up into “high” vs. “low” functioning, while the reality is that most of us have complicated combinations of gifts and disabilities which can’t easily be separated out from each other, most autistic people also are probably not purely sensory-seeking or sensory-defensive, but experience distinctive blends of those tendencies, which are also impacted by our personalities, temperaments, and histories of being supported in asserting our physical limits.

While I think that “sensory seeking/avoidant” terminology has worthwhile uses, if we mistakenly conflate those concepts with the experiences of being hyper- or hyposensitive, I worry that we risk depriving autistic kids of language to more reliably describe their sensory needs and wants.

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