The summer before seventh grade I went to an amusement park with my cousins. Until that day, my amusement park experience had been limited to kiddie rides. My parents weren’t roller-coaster-riding types and I guess they assumed I wasn’t either.
So there I was, first time in a real amusement park with real rides and roller coasters and everything and I was . . . terrified. I felt sick to my stomach just looking at the rides. But my cousins, who had been to the park many times, grabbed my hands and made a beeline straight for a ride that looked like this:
It was called Strawberry Fields and as we waited for it to start, songs from “Sgt. Pepper’s Lonely Heart’s Club Band” blared from the speakers overhead. My memory of that moment is clear as if it happened yesterday. I can hear the scratchy version of “Lucy in the Sky with Diamonds”, feel the greasy vinyl of the safety bar beneath my sweaty palms and practically taste my fear as my heart galloped in my chest.
And then we started to move, slowly at first, gaining speed, a little more and a little more until the wind was whipping my hair across my face and the three of us were pressed in a bone-crunching heap against the outside of the car and I was screaming right along with everyone else through 90 seconds of pure, unadulterated joy.
When the ride stopped all I could think was, “holy shit, let’s do that again!” And again and again and again.
I’d discovered one of my favorite sensory experiences: going fast. Blindingly fast. Mind-numbingly fast. The speed was exhilarating. I rode everything in the park. The faster it went, the more I liked it. Spinning, falling, dipping, swinging–I had no idea why I liked the intense physical sensations that the rides created, but I did. When I went back to the park on a seventh grade field trip, I spent the morning riding a roller coaster, jumping off and running around to the entrance to get right back in line.
Sensory Seeking =/= Stimming?
Now that I know about sensory seeking behavior, my sudden intense love of amusement park rides makes sense. Autistic people are often sensory seeking in a big way. We have a strong need for intense sensory input and will deliberately seek out or create sensory experiences to satisfy that need.
Sensory seeking is often described as a way to either stimulate an understimulated nervous system or calm an overstimulated system. Which sounds a lot like the typical definition of autistic stimming.
That raises the question: is sensory seeking behavior a form of stimming? There is a lot of overlap between the two, but I don’t think they’re identical. Stimming provides sensory input so I think we can say that all stimming is sensory seeking. But stimming is generally repetitive, which isn’t always true of sensory seeking.
Going on a roller coaster once or twice? Probably sensory seeking. Going on a roller coaster twenty times in a row? Could be stimming.
Honestly, I have no idea. Feel free to weigh in with your own theory, opinion or confusion in the comments.
The Wild Ones
Much of my childhood play was sensory seeking in disguise. Some of my favorite activities as a kid:
Going as fast as I could down big hills on my bike, roller skates or sled
Jumping or diving off the high board
Hanging upside down and doing somersaults on the monkey bars
Jumping on the bed (broke my jaw doing this)
Bouncing on a trampoline or Hippity Hop
Sit ‘n spin!
Climbing trees and hanging upside down from the branches or jumping to the ground
Running into the padded gymnasium wall and bouncing off
Zipping my arms into my coat and playing crash dummies with a friend (this never ended welll)
Lying underneath my beanbag chair while watching TV
Swinging as high as I could on the swings then flying off
These are not especially “girly” pastimes. They’ll get you branded a tomboy and a handful. If you’re a boy, you’ll be seen as wild and unruly, maybe you’ll get an ADHD diagnosis.
As a teenager I took up martial arts, primarily for the self-defense aspect of it, but I discovered that I liked the contact that sparring involves. Getting hit while padded up with gear creates a very tangible kind of physical feedback. So does pounding a heavy bag or kicking a hand target hundreds of times in a row.
Although that may sound masochistic, it’s not. I don’t seek out pain. Let’s be clear about that. Although I often engage in activities that have a risk of injury and pain, what I’m looking for is a benign physical sensation–one of pressure or contact or movement–not pain.
There is sometimes a belief that people who engage in sensory seeking activities like headbanging, slamming into objects or biting themselves are doing it because pain is the desired outcome and I don’t think that’s always true. It may be true for some, but for others, those activities don’t hurt, either due to pain hyposensitivity or an ability to regulate the level of contact in a way that keeps it below our pain threshold.
64 Flavors of Sensory Seeking
While I’m primarily a proprioceptive and vestibular sensory seeker, there other types of sensory input that I’m strongly drawn to:
touching surfaces and objects
the feeling of sound resonating in my chest (Tibetan singing bowl, trains, explosions in IMAX movies, loud music)
the exhaustion after a hard workout
the smell of fire
being immersed/floating in water
Of course, that’s me. Everyone’s sensory seeking preferences are different. Some common examples by category:
Tactile: seeking touch from others; touching objects, textures or surfaces (either certain types or everything)
Visual: seeking visual patterns, moving objects, specific colors or shapes
Oral: seeking food or nonfood objects to taste, chew or suck on; seeking specific sensations like crunchy, spicy, or minty
Olfactory: seeking specific preferred smells; smelling everything
Vestibular: spinning, rocking, being upside down; seeking specific head or body positions; jumping from heights; seeking intense speed or movement
Auditory: seeking loud, repetitive or specific types of noises; making sounds because they’re pleasing
Interoceptive: seeking bodily sensations like hunger, thirst, urgency to use the bathroom, fatigue
Proprioceptive: physical contact, crashing into things, stretching, pressure, sound resonance
What drives to seek out our preferred sensory inputs? I haven’t been able to find much scientific background, so I have only my personal experiences to share:
Regulatory: As a kid, I think my intense sensory seeking behavior was a way of soothing my overloaded brain. There were many many days when I couldn’t wait to get home from school and ride my bike to the top of the highest hill in the neighborhood. The hard climb up and brain rattling ride down were the only way I knew to soothe the angry anxious restless feelings that built up during the day.
As an adult, I’m better at regulating myself in more typical ways. Still, after a long day in the city I like to wedge my body into a seat on the train so my legs are pressed up tight against the seat in front of me. I do the same thing on airplanes and long car rides. The pressure calms me and helps downregulate my sensory overload.
I’ve read that stimming and sensory seeking behavior can be stimulating (hence the term stimming) but I’m rarely in need of any added sensory stimulation. I usually have more than I can handle.
Connection: Sensory input reminds me that I have a corporeal form. It connects my mind to my body and my body to my environment in tangible ways. Without touch, pressure and movement, I can easily get disconnected from my physical self.
Organization: Some types of sensory input help me feel more organized and integrated. At the end of the day, when I’m watching TV, putting my weighted blanket over my legs keeps me from turning into a squirmy mess on the couch. Without the added weight on my legs, I’ll change positions every five minutes trying to get comfortable because my body feels so disorganized and physically confused by the end of the day.
Physical dissociation and disorganization are things I’ve only recently realized that I experience. I was going to write about them to help clarify the “why’s” of my sensory seeking but I wrote so much that it will have to be a separate post.
Not Growing Out of This One Either
I’ve always had strong sensory-seeking tendencies. I think I always will. This isn’t a bad thing. It’s actually one of the things I like about being autistic. I have the ability to experience certain sensations in ways that most people don’t.
I like the intensity and immediacy. I like the pleasure I can find in mundane everyday things like the rumble of a passing train or the feel of a matte bookcover. It’s not exactly a superpower, but does give the world around me a vivid tangible realness that I can tap into whenever I need to reconnect myself with my self.
Polly Flinders was the bane of my childhood. I hated her with a passion. Why? Because she made dresses like this that were all the rage for little girls in the seventies:
For a four-year-old with tactile defensiveness, that dress was an instrument of torture. I can still feel the exposed elastic biting into my upper arm, the scratchy lace prickling my skin, the rasp of the tag on the back of my neck, the smocking bunching up across my chest.
Thanks to Polly Flinders and her ilk, I was branded a tomboy early in life. Not because I didn’t like dresses, per se. The way clothing feels is ten times more important to me than how it looks and “boyish” clothes (jeans, plain cotton shirts) were more comfortable.
I still shop for clothing based on feel first and look second. Where a lot of women see exciting new outfits, I see this:
Clothes shopping is a matter of eliminating the things I know will be too uncomfortable then choosing what I like from the remaining options. If there are any.
When I do find something I like–and by like, I mean something that’s comfortable–I tend to buy it in multiples. I have a rainbow of v-neck t-shirts and long sleeve tees, all exactly the same brand, style, material and cut. Last weekend, I found a soft comfy sweater at Old Navy and bought it in three different colors.
When I like something, I’ll wear it until it literally falls apart. The few things I really love–my favorite pair of jeans, my softest t-shirt–I put on as soon as they come out of the wash. They rarely get hung up in the closet.
That isn’t to say that I live in tees and jeans. I have some dressier clothes that are comfortable. I try to dress both comfortably and appropriately for the situation. You’re just not going to find me greeting my husband at the door in pearls and heels like June Cleaver.
Complicated and Delicate
My defensive shopping strategy, my intense dislike of Polly Flinders and many of my behavior quirks are a result of tactile defensiveness. Of all the sensory issues associated with ASD, this is the one that is most pervasive for me.
Tactile defensiveness (or tactile sensitivities, if you prefer) takes many forms, but the basic idea is that it causes a negative reaction to a tactile stimulus that is generally considered nonirritating by neurotypical people. The “nonirritating” tactile stimuli that irritate me include: seams (especially in socks!), tags, ruffles, lace, synthetics, wool, tags, tight/high waists, exposed elastics, stitching that I can feel against my skin, collars that are too high, collars that are too open, tags, shirts that are too loose or formless, and sleeves that are anything other than standard short or long sleeve length.
Did I mention tags?
The first thing I do when I buy a new shirt is cut the tag out. Unless The Scientist gets to it first. Last weekend I was about to cut the tag out of one my new sweaters when he took it away from me and went to get his penknife. I have a history of being so eager to get every little bit of the tag out of a shirt that I accidentally cut the shirt. The Scientist then has to listen to me berating myself for ruining a new shirt, so when the task looks complicated, he sometimes takes matters into his own hands.
As he was carefully trimming the last bits of stitching away, I bounced over to ask him why it was taking so long and without looking up from his work, he said, “It’s complicated and delicate. Like your feelings.”
And so true. My relationship with clothing has always been complicated. I have a lot of frustration and shame connected to my clothing preferences, mostly because I avoid clothes that are considered more stereotypically feminine. This was a big problem growing up. Shopping for dress-up clothes was a battle that both my mother and I dreaded. Still, no matter how much I protested, I was expected to dress “like a girl” on special occasions. The rest of the time, I defiantly clung to my worn bell-bottom pants and cotton polo shirts.
The Root of the Problem: Light Touch
The general theory of tactile defensiveness is that the light touch receptors in the skin are overly sensitive, triggering a “fight or flight” response, that causes the sufferer to perceive certain types of touch as threatening.
The first part rings true for me. I’m definitely oversensitive to light touch. The second part? Not so much. I have more of a “get the hell away from me” response. I don’t feel threatened by a lace collar. I don’t feel my heart begin to race or my palms sweat. Some types of sensory overload do provoke a fight or flight response in me, but when it comes to tactile sensitivities, the unwanted stimulus just irritates the hell out of me, to the point that I can’t stop thinking about anything other than making it go away.
I do know that others have much more severe tactile sensitivities than I do, so perhaps some people experience a response on the level of fight or flight. (If anyone who does can address this in the comments, that would be excellent.)
Deep Touch: The Kind Aspies Crave
Contrary to popular belief that aspies don’t want to be touched at all, many aspies like and seek out deep pressure touch. This is definitely true for me. I love the feel of heavy blankets, snug clothing (Under Armour!), and falling asleep with my husband spooned against me.
As a kid, I liked to pull my beanbag chair on top of me while I watched TV. I also liked to get my sister to lie down on me, a short-lived trick that stopped the day I told my older cousins about it and they made fun of me.
Occupational therapists recommend things like weighted blankets and lap pads to help children with tactile sensitivities get the pressure they crave. I’ve also read a lot of parents’ stories about children squeezing themselves into crevices between furniture, which is probably another way of getting a full body squeeze. I do something similar on trains and airplanes, slouching in my seat and wedging my knees against the seat in front of me.
My tactile sensitivities have led to dozens of little quirks, most of which started in childhood. I’ve never liked the feeling of water spraying on my face (oddly, I’m fine with having my face underwater). If I’m eating something messy with my fingers, I clean them on a napkin between every bite. When my skin gets too cold, it itches worse than a case of poison ivy. If someone kisses me, I immediately wipe the little wet spot from my face.
These are all annoyances. I’ve been working around them or grudgingly tolerating them for decades. But as an adult with tactile sensitivities, I’ve also encountered an adult problem. To address it, I’m going to spend a couple of paragraphs talking about sex. If that makes you uncomfortable, you should skip down to the last section.
Tactile defensiveness can have a big impact on an intimate relationship. In my case, at times it makes me shrink away from my husband’s touch. Light touching–the kind often associated with seduction and sensuality–makes me tense up and pull away. It’s not so much irritating (like uncomfortable clothing) as it is overstimulating. Imagine being tickled in your most ticklish spot. My reflexive response is to break contact as quickly as possible.
For years, my aversion to sensual touching was the source of much frustration for both of us. My husband didn’t understand why I was randomly rejecting him. And it wasn’t a polite, “not tonight, dear, I have a headache” rejection. It was a very literal, “don’t touch me” often muttered as I shoved his hand away. Unfortunately, I had no explanation for why I disliked being touched at certain times or in specific ways. If I couldn’t explain it to myself, how I could explain it to him?
While I have a better understanding of my touch sensitivities now thanks to reading about Asperger’s, I don’t think I’ll ever enjoy light touching. On the positive side, many types of sexual touching and contact fall into the realm of deep pressure, meaning that it’s possible to have a rewarding sex life even if you suffer from tactile defensiveness. It may require some patience and communication, as well as a bit of research and experimenting, but it’s definitely possible.
Was I Supposed to Outgrow This?
In researching tactile sensitivities, I found a few occupational therapists who stated that most children outgrow their tactile defensiveness. Perhaps the children who get the recommended intensive early therapy do. I clearly haven’t, and judging from the postings on ASD forums, neither have many other adults.
There is little therapeutic information available for adults with tactile defensiveness. Once you’re past the age when playing with Play-doh is appropriate, I guess you’re supposed to be old enough to suck it up and deal with it.
As with so many other aspects of ASD, the experts seem to forget that autistic children grow up to be autistic adults. When that happens, the same sensitivities that kept us from finger painting affect our marriages and our parenting abilities. While I’ve seen some literature acknowledging that this problem exists, there is frustratingly little that addresses what we can do about it.
*Polly Flinders is actually a character in a British nursery rhyme who had the misfortune of having her name co-opted by Bayliss Brothers, the company who made the dresses. Sorry, Polly, I guess I don’t really hate you after all, just your horrible namesake dresses.
Like a lot of what I experience because of Asperger’s, until I started reading about insomnia, I didn’t realize that I’ve suffered from it on and off since I was a child.
Apparently, I’ve always had slightly abnormal sleeping habits. Sometimes it takes me a long time to fall asleep. Some nights I wake up a half dozen times; others (like today) I wake up at 3:00 AM feeling like it’s the middle of the afternoon. I can hit the ground running at 5:00 AM with an energy level that seems to piss people off.
In more technical terms, I have classic signs of autism-related insomnia:
- prolonged sleep latency (time to fall asleep)
- reduced sleep efficiency (decreased time asleep/time in bed)
- reduced total sleep time
- reduced sleep duration and continuity
- night awakening exemplified by of long periods of time awake1
I was shocked to learn that the prevalence of insomnia in children with ASD is 40% to 80%.2 When you read about typical symptoms of autism and Asperger’s, sleep disturbance is not only missing from the core list of diagnostic symptoms, it’s rarely mentioned at all.
A Budding Insomniac
My parents adopted a benign disinterest when it came to my sleep habits. They put me in bed at eight o’clock and the rest was up to me. I’d make multiple trips to the bathroom for a drink of water or to take one last pee (three or four or more times) but as long I didn’t bother my parents, they didn’t make a fuss about whether I was actually sleeping.
I had a nightlight beside my bed and most nights I’d hang over the side of the bed, reading until I felt tired. Before I was old enough to read, I would sit at the top of the steps and listen to what was going on downstairs to pass the time until I felt tired. In my teens I got a portable black and white TV for my birthday and I’d watch TV, using earphones so I wouldn’t get caught.
I think my parents knew about these habits–they occasionally pointed out that I’d go blind if I kept up my “reading in the dark” and more than once they shooed me back to bed from the bottom of the steps. On an average night, though, my parents’ bedside lights had been turned off by the time I made my last couple of trips to the bathroom.
When I woke in the night, which happened most nights, I’d call my dad and he would lie down in my bed while I went to the bathroom. I’m not sure what purpose this served except that I remember being a little afraid of the dark after walking into a wall and getting a bloody nose one night. I guess it was reassuring to know that if I did it again, at least my dad would be there to hand me some tissues.
My parents’ laissez-faire attitude toward my sleep problems taught me two things: (1) it’s not a big deal and (2) you’re responsible for putting yourself to sleep. The second part sounds a bit harsh, but because they never made an issue out of when or how much I was actually sleeping, it never felt that way. A little lonely perhaps, but I also liked those few hours at night when everyone else was asleep and the house was quiet. I got to indulge in my special interest (reading) and that was calming, which eventually lulled me to sleep.
Granted, if I’d been destructive or intent on going out to roam the neighborhood, this strategy wouldn’t have worked.
What Works for Me
As an adult I’ve learned that having the right sleep conditions makes a big difference for me. Some things that help me sleep better:
1. Plenty of exercise during the day. I need to be physically tired to sleep well so getting in at least an hour of walking, running and/or swimming every day is essential.
2. Heavy blankets. The slight pressure of a heavy comforter and blankets relaxes me. If I only have a sheet or light blanket, I’ll wake up repeatedly.
3. A cool room. I tend to overheat when I sleep. I’m not sure if this is Aspergers-related, but if the room is even slightly warm, I’ll wake up sweating.
4. Comfortable clothes. As a kid I wore snug fitting pajamas. I still can’t sleep in anything that’s too loose, like a nightgown, because I end up feeling like it’s strangling me the first time I turn over.
5. Familiar surroundings. It’s much easier to relax when I’m in a familiar environment. If I go on vacation or move to a new place, it takes me a few days to “learn” to sleep there because my brain needs to catalog the unfamiliar sounds and smells.
6. A quiet environment or consistent noise. I need either total quiet or a consistent natural noise (wind, waves, steady traffic) to fall asleep. Something like intermittent voices, a radio or a television–even one playing in the apartment above or below me or in an adjoining hotel room–will keep me awake until it stops. In fact, I’ll usually be awake long after it stops because of the anxiety it generates.
7. A dark room. I can’t sleep unless the room is completely dark. Light shining in my room through a window or under/around a door will keep me up. The flashing light of a muted television drives me nuts.
8. Reading (or enjoying a special interest) before bed. Reading has been one of my special interests since childhood. Like any special interest, it distracts and calms me. I think it’s also become a sleep cue. When I pick up a book in bed, my brain starts sending out sleep signals to my body. It usually only takes 15-20 minutes of reading before I start to feel myself drifting off.
9. A light dinner and no snacks after dinner. I fall asleep faster and sleep better if I have a low-fat, low-sugar dinner and give myself at least a few hours to digest it before going to bed
Those are the things that I’ve discovered over the years work for me. I’d love to hear from others on the spectrum who’ve discovered tricks for getting to sleep or staying asleep.
Recently I was talking with my daughter about my sleep habits and she asked why I don’t try to resolve my insomnia. I told her that it doesn’t bother me–I use my middle-of-the-night time to read or think–or impact my daily life. Her response was, “Maybe it does impact you and you don’t realize it because you’re so used to it.” There’s a lot of wisdom in that statement. Something to think about, for sure.
(Unless you’re a geek like me, you can safely stop reading here.)
A Little Geekery About Melatonin and Circadian Rhythm to Wrap this Up
There are a few theories about why so many people with ASD have sleep problems. One of the most prevalent theories points to abnormal melatonin levels.2 Consequently, many children with ASD-related insomnia are given melatonin to induce more regular sleep habits. From what I’ve read anecdotally, this works well for many children and results in unacceptable side effects for some.
Another, lesser-known theory that caught my attention suggests that neurodevelopmental disorders increase the likelihood of sleep disturbances due to an inability to perceive and interpret sleep-related environmental cues.3 This is obviously far more difficult to measure and quantify in a lab than melatonin levels (which are easily measured in blood plasma). But it got me digging for more details because so much of my Asperger’s seems to trace back to the dysfunctional processing and filtering of my environment.
Caution: amateur scientist at play: I learned that our circadian rhythm (the internal clock responsible for, among other things, when we sleep) relies on external inputs to regulate sleep. The natural light-darkness cycle is the primary input, but our circadian rhythm can also be affected by our rest/activity schedule, mealtimes and social interaction. All of these inputs pass through a “central pacemaker” in the brain, which “outputs” various hormones that act as signals to the rest of the body and regulate the sleep-wake cycle.
Here’s a nifty graphic showing the “input” and “outputs” of the human circadian system4:
The really interesting part is that the body can’t maintain an accurate 24-hour circadian rhythm without the input of environmental cues. Our natural circadian rhythm, in the absence of environmental cues, is 25-27 hours. Whoa!
Perhaps dysfunctional processing of one or more circadian inputs throws off the circadian rhythm, leading to the abnormal levels of melatonin (a key output) found in many people with ASD.
The dysfunctional processing theory would explain why many of the things I do to help me sleep better qualify as circadian inputs: exercise, consistent activity cues around bedtime, no eating close to bedtime, and a dark room. Over the years I’ve developed inputs that tell my body loud and clear: calm down and go to sleep.
It doesn’t always work but I have a feeling things could be a lot worse.
1Goldman, Suzanne et al. “Parental Sleep Concerns in Autism Spectrum Disorders: Variations from Childhood to Adolescence” J. Autism Dev Disord, 2012, (42) 531-538.
2Souders MC; Mason TBA; Valladares O; Bucan M; Levy SE; Mandell DS; Weaver TE; Pinto-Martin D. Sleep behaviors and sleep quality in children with autism spectrum disorders. SLEEP 2009;32(12):1566-1578.
3Williams, P. Gail et al. “Sleep problems in children with autism” J. Sleep Res. (2004) 13, 265–268.
4Escames, G., Ozturk, G., Baño-Otálora, B., Pozo, M. J., Madrid, J. A., Reiter, R. J., Serrano, E., Concepción, M. and Acuña-Castroviejo, D. (2012), Exercise and melatonin in humans: reciprocal benefits. Journal of Pineal Research, 52: 1–11. doi: 10.1111/j.1600-079X.2011.00924.x
This is loosely related to last week’s post on flat affect. When I look blank or checked out, sometimes it’s because I’ve withdrawn or shut down.
When my husband said this to me, we were sitting in a restaurant waiting for lunch to arrive. It was the tail end of a great weekend at the beach and I was off in my own world.
Withdrawal. Shutdown. You’ll hear people with Asperger’s use different words for the disappearing act we perform under stress.
For me, withdrawal feels more accurate. The sensory input becomes too much. Too many people, too much noise, too many decisions, too little time to process it all.
Sitting in the restaurant, I felt the telltale signs of withdrawal creeping up on me. The first is a sudden heavy sleepiness. All I want to do is put my head down and close my eyes. Or better yet, curl up in a nice safe place and take a nap. Of course, the urge to withdraw almost always hits at at a time when a nap is impossible and there are no safe places nearby.
The second sign–the one that makes it clear I’m not just overtired–is the sensation of moving through a long tunnel. Everything around me recedes and grows quieter. I feel myself disconnecting from the conversation. It becomes harder to formulate responses and I have no motivation to initiate any interaction.
Once I’ve drifted far enough into the tunnel, I’m quite content to sit and stare off into space, detached from everything that’s happening around me. I feel invisible.
My withdrawals are almost always triggered by cumulative stress. The morning leading up to that lunchtime withdrawal was marked by a series of little frustrations. On any other day, I would have simply rolled with them, but I think two days of being in an unfamiliar environment was silently taking its toll.
Suddenly the music in the restaurant was too loud, the sun was too bright, I couldn’t tune out the conversations at the tables around me, the menu had too many options, none of which looked good. Sitting half in the sun and half in the shade, I was too cold and too hot at the same time. Every time I looked up, the guy at the next table quickly looked away–and I think that was the last straw.
Lately I’ve been thinking a lot about why I frequently catch people staring at me, often repeatedly over the course of a meal or a train ride. So off went my perseverative brain, puzzling over that question again. Then–bam–the sleepiness rolled in and next thing I knew I was slipping into the tunnel.
Contrary to how it must look externally, when I’m withdrawn I’m not sad or depressed. Sometimes a withdrawal is triggered by anxiety but sometimes it’s triggered by having too much fun. Whatever the trigger, a withdrawal is always the result of being overwhelmed.
Once I’ve disappeared, though, the dominant feeling is one of comfortable blankness. Relief.
Withdrawing or shutting down is obviously a defense mechanism. My brain decides that the processing demands of my environment have become too high and it takes some resources offline for a while. The withdrawal itself is restorative, a sensory timeout, but it’s not voluntary and even when I know it’s happening, there’s little I can do to stop or control it.
I’ve been thinking about that a lot. Do I need to control it? Do I want to? Ideally, it would be nice to delay a withdrawal to a more convenient time, like during the drive home instead of in the middle of lunch. I’m not sure if this is possible. The urge to withdraw is a strong and physical, more like being hungry than being sad. I can talk myself out being sad, but being hungry only goes away if I eat something.
Looking at a withdrawal as a physical need makes it easier to see that it’s not something I can simply distract myself from. Still, I hate the idea of feeling helplessly ruled by my body. Maybe the answer lies in what comes before the withdrawal, that series of little frustrations made worse by being out of my element.
I’m getting better at managing unexpected change. I’m slowly learning to embrace the unfamiliar. I’m becoming more mindful of the ways my physical comfort affects my emotional shifts. But perhaps I’m still too good at stuffing down the negative emotions, the little discomforts and anxieties that don’t feel important enough to waste energy on.
Normally if someone tries to engage me in conversation when I’ve shut down, all they get are monosyllabic answers. When my husband asked, “where are you?” my nonanswer was “why?”
He paused a moment, probably wondering if he was doing the right thing by confronting the situation head-on and then he said, “You disappeared.”
That simple acknowledgement of what I was experiencing helped me re-engage with him. We’d never talked about my withdrawals before. My husband has always, I think, assumed they were simply “bad moods,” something to be ridden out and ignored.
They’re more than that, and now he has a better understanding of not only where I go when I disappear but how I feel and why it’s not entirely a bad thing.
sensory processing, executive function, and learning to recognize discomfort before it leads to a meltdown . . .
Somewhere in my early reading about Asperger’s, I came across this idea: If something is bothering you, you can do something about it.
That seems like deceptively simple advice. If you’re cold, put on a sweater. If you’re hungry, eat something. If the sun is in your eyes, move or close the blinds or put on your sunglasses.
For a typical person, the idea that you can get up and put on a sweater if you’re cold is probably not an earth-shattering revelation. In fact, it’s something they’ve been instinctively doing since childhood. The typical brain receives an incoming message about physical discomfort, finds a solution and swiftly acts on it:
typical body: I’m cold.
typical brain: We’re underdressed. Stop what we’re doing and put on a sweater.
typical body: Good idea!
This is where the typical person gets up from the computer, goes to the closet and takes out a sweater. But for a lot aspies, the body-brain communication is dulled to the point that we appear to not feel pain, cold or other physical sensations in the way that typical people do. You often hear parents of autistic youngsters say that their children will play outside in the winter without wearing a coat or will injure themselves but continue playing like they haven’t noticed.
Based on my experience, I don’t think we necessarily feel pain or cold less. I think our body-brain communication is muted. As a result it takes a lot more sensory input from our bodies to provoke a reaction in our brains.
Here’s how my brain functions:
body: Something’s not right.
brain: Uh-huh . . .
body: No really. I feel strange.
brain: Yeah yeah . . .
body: I think I’m cold.
brain: Shhh, I’m busy.
body: Yep, definitely cold.
brain: Okay, I get it, you’re cold. Hmmm . . . maybe we should do something about it.
body: Look, I have goose bumps.
brain: I’m thinking!
body: Now I’m shivering.
brain: Okay, go get a sweater.
Even when I get to this point, I may put off stopping what I’m doing to get that sweater because in addition to the sensory processing issues of AS, there is the issue of poor executive function.
To understand the complex brain-body interaction problem that aspies struggle with, it might help to break it down into a few parts and look at them separately first.
Those of us with ASD have a tendency to put with stuff until we can’t anymore.
From childhood, we learn that the world is full of annoyances, big and small. Our clothes have scratchy tags and seams. The kids around us never shut up. We suffer through bad smells, weird food, annoying noises, uncomfortable temperatures. The list is endless and it differs for each of us. But I’m betting that one thing we have in common is that we get used to being physically uncomfortable.
Maybe we get used to it not only because we’re more sensitive to physical sensations but because the physical discomfort signal often isn’t strong enough to cause us to act on it. This sounds like a conflicting statement. How can we both more and less sensitive to the physical world?
Often I find myself feeling uncomfortable but I’m so deeply engaged in what I’m doing, that the discomfort hovers at the edges of my consciousness. It exists as low level background noise, not serious enough to make me stop and think about it, but not minor enough that I can completely ignore it. So I put up with it until it becomes truly impossible to ignore.
Of course, by that point it’s long past the time when I should have acted and the minor annoyance has ballooned into serious discomfort.
So what’s going on here? Why can’t an adult with supposedly above average intelligence figure out that she’s cold and the obvious solution is to get up and walk across the room to the closet to get a sweater?
Scientists still aren’t exactly sure how and why aspies process sensory information differently from typical people. The simplest explanation is that we have difficulty prioritizing incoming sensory data. For example, when a typical person walks into a strange place, they quickly and instinctively filter out the unnecessary information from the necessary. In a doctor’s office, they zero in the reception desk. In a coffee shop, their brain immediately sorts out where the ordering line is. In a busy train station, they filter out the distractions to focus on the directional signs pointing them to their platform.
If just reading about those unfamiliar situations raised your anxiety level, you’re not alone. The aspie brain takes one look at the busy train platform gives equal weight to the directional signs, the map on the wall, the crying toddler, the homeless man shaking his cup of coins, the stale underground smell, the roar of the trains, the sound of the bathroom hand dryer, the person brushing up against you, the uneven flooring, and a million other sights, sounds, smells and physical sensations.
Like so many other things, what typical people do instinctively–filter out the sensory noise to identify the relevant inputs–the aspie brain does through a logical process of elimination. Given enough time, I can stand in the busy train station and find the correct directional signs, but it will usually take me longer than it would take most typical people.
So how does this apply to those everyday annoyances that we’re so good at ignoring? Because we seem to receive so much of our environmental data at the same “volume” level, it’s hard for any single piece of information to rise above the rest and get noticed. Typical people instinctively sort those same incoming signals by priority and the “I’m too cold” signal will get mentally red flagged. This red flag message then interrupts the part of the brain that’s engaged in work to say “hey, we’ve got a problem over here.”
The aspie brain doesn’t seem to red flag sensory input until it reaches critical levels that make it physically impossible to ignore. By that point it’s often too late, and a meltdown is imminent.
Unfortunately, the sensory processing issue is only half of the problem. Even when I notice that, yes, I’m too cold, I still tend to ignore that information for as long as possible. Often I’m probably investing more energy in ignoring the annoyance than it would take to get up and remedy the situation.
So it’s not that I’m not uncomfortable. I am. Just not uncomfortable enough to take action.
This is where executive function comes into play. Executive function is an umbrella term that covers things like planning, problem solving, mental flexibility, multi-tasking and initiating and monitoring actions. Poor executive function is why aspies often have trouble switching between tasks, starting and stopping activities and planning ahead. It’s also a big part of why we put up with stuff that could be easily fixed.
For an aspie, the time lag between detecting the annoyance, formulating a plan to deal with it and then taking the required action can be long or even indefinite.
What appears to be a simple problem–this thing is bothering me and I need to do something about it–has very complex neurological roots.
Yeah, I know what you’re thinking. All of this theory stuff is great, but what can I do?
You Can Do Something About That
The first step is being attentive to what your body is telling you. For me, the feeling that something is physically uncomfortable is very specific. It hovers right at the edge of my brain, like an itch that I can’t quite reach. I’ve begun to practice listening for that feeling when I’m engaged in something else.
The second step is consciously prioritizing that feeling as early as possible after you notice it occurring. For example, as I was about halfway through writing this, I started to get the itchy feeling. When I came to the end of a stream of thought I paused and disengaged my mind from writing enough to realize that the sun was shining on my laptop monitor, creating a glare.
The next step is identifying a solution. Is this a problem I can easily fix? How? In the case of the glare, I looked around and realized that there is a shade in the coffee shop window next to me and it has a pull chain that would allow me to lower it.
The final step is, of course, acting on the problem. If the solution is simple, try to act on it right away. It can be hard to stop what you’re doing to take that action, but once you do, you’ll be able to concentrate much better on your activity. I try to use that as an incentive to break away and do what I need to do. Since I pulled the shade down, I’m no longer squinting at my monitor, my face isn’t too warm from the sun and I know I won’t be leaving Starbucks with a headache.
Don’t be surprised if it takes awhile to get the hang of doing something about the little things in life that bug you. At least fifteen minutes passed between the time I started to peripherally sense that something was wrong and the time I lowered the shade.
Retraining our brains is hard work and requires some patience. Rather than feeling bad because a typical person would spend about 15 seconds on a process that took me 15 minutes, I try to focus on the fact that a year ago, I would have just kept right on typing, squinting at the glare on my monitor and feeling miserable.