This is the final part in a series about sensory sensitivities and atypical sensory processing. Read the other parts: Part 1 | Part 2 | Part 3
When we think of diet or dieting, we usually think of restricting our intake in some way. But a sensory diet isn’t about restriction, it’s about fulfilling sensory needs and improving self-regulation with a specific selection of sensory activities.
The term sensory diet originated in the occupational therapy field and is commonly used in relation to both autism and sensory processing disorder. To create a sensory diet, an occupational therapist looks at a person’s areas of sensory hypo- and hyper-reactivity and comes up with ways to help up-regulate or down-regulate them.
This video has some great examples of the types of sensory activities that are often prescribed:
Sensory diet activities come in two flavors: upregulating and downregulating. Upregulating activities help to stimulate under-reactive senses. Downregulating activities, in contrast, help calm over-reactive senses.
Sometimes an activity that is upregulating for one person or in one situation can be downregulating for another person or in a different situation. For example, bouncing on a trampoline can stimulate the proprioceptive sensory channel but it can also help calm someone who is overloaded (by releasing excess energy). Continue reading Sensory Diet→
This is part 3 in a series about sensory sensitivities and atypical sensory processing. Read the other parts: Part 1 | Part 2 | Part 4
While atypical sensory filtering is related to sensory sensitivities, not all unfiltered sensory data will trigger sensitivities. Remember the sounds I described hearing as I’m typing this? I’m not especially sensitive to any of them. I hear them and it’s hard to tune them out, but I don’t have a biological stress reaction to them. They’re just there and over the years I’ve grown used to having a lot of irrelevant aural data constantly pinging around in my brain.
In fact, I didn’t know until a couple of years ago that other people don’t hear all of those distinct ambient sounds when they’re engaged in an activity.
I suppose what’s happening in this case is my sensory gating is failing, letting the irrelevant sounds in. They get routed to an area of my brain that says, “oh, right, traffic, dog, sirens, rain, typing, closer traffic, harder rain, actually two dogs, footsteps upstairs” and on and on.
What should happen when I hear those repetitive background noises is something called habituation. The first time the dog down the hall barks, my filtering system might kick it upstairs to my decision making brain and say, “hey boss, is this something we need to worry about?” The decision making region would analyze the situation, decide that the dog is neither a threat nor any of my business, and say, “nope, ignore that from now on.” The filtering system would then flag that gate for closing, eventually tuning out the repetitive barking until I stopped noticing it.
This is the first in a series of posts about autistic sensory processing and sensory sensitivities. Part 2 | Part 3 | Part 4
I once had a t-shirt that I really wanted to like. It was a souvenir from a trip to Hawaii. The color, the material, the fit, the design–all perfect. It would have been my favorite new shirt, except for one thing.
It had a tiny thread in the collar that scratched my neck. A thread so small that I couldn’t see it. I’d cut out the offending tag and all of the visible stitching holding the tag in place, but that one little thread refused to go.
So I decided that I was going to get used to it. I was going to pretend that evil remnant of plastic thread didn’t exist. If it was too small to see, surely I could ignore it.
I tried. I really did.
I put the shirt into my summer t-shirt rotation and wore it at least once a week. The material got softer with each washing, which only made me want to love it more. It was one of the most comfortable shirts I owned. It would have been that most elusive of things–the perfect shirt–except for that microscopic thread.
I developed seriously mixed feelings about the shirt. I was determined not to let the thread win. It became A Thing. Some days I would wear it all day, doggedly ignoring how the thread jabbed at the back of my neck when I moved this way or that way. Other days I’d only make it to early afternoon before tossing the shirt in the laundry and changing–with a sigh of relief–into a more comfortable shirt. One with the tag cut cleanly out.
This went on for years. I wore the shirt in spite of how it made my neck itch and burn, in spite of the way it made me unconsciously pull at my collar all day long. I wore it right up until the day I admitted to myself that I was never going to get used to that thread. Putting my Hawaii shirt in the donation bag felt like a defeat. A thread–so small it was invisible–had gotten the better of me. Continue reading Sensory Sensitivities and Atypical Sensory Processing→
I think I was born to be in motion. I have difficulty resting when I’m at rest.
If I have to sit in one place long enough, I’ll cycle through dozens of postures without thinking about it. I slouch. I splay. I pin one foot under the other. I pull one knee up, then two, hugging my shins with a hand or arm. I sit on my foot, ankle or calf. I sit crossed legged, even on chairs. I put my elbows on the table, lean my head or chin on my hand, interlace my hands on top of my head. I perch on the edge of my chair, turn sideways, tangle my feet in the legs of nearby furniture.
The variations are endless but they have one thing in common–they orient my body to my surroundings. Without a steady stream of proprioceptive feedback, I start to feel disoriented and disconnected from my body. I feel lost in space. Confused. Physically disorganized..
When I’m at home, sometimes I just go lie on the floor to give my body a break from being upright. Because being upright requires figuring out where to put my hands and arms and legs and feet and often no sooner do I get that all sorted out than that restless feeling starts nudging at my leg or foot or spine and I need to move again.
It’s not that I can’t sit like a proper adult. I often start out sitting with both feet on the ground, arms relaxed at my side. In fact, in new social situations, I make a conscious effort to sit properly. Because I’m not four years old. I’m an adult–often an adult in a situation where I’m expected to look professional–and adults have very specific expectations of other adults in those situations.
Often what I come up with is a tense variation of typical “good sitting posture”:
Then my internal clock starts ticking and one of two things happens. If I’m in a formal setting, my body will grow more and more tense as I work to maintain a polite, socially acceptable posture. Then I’ll start covertly stimming, rubbing something between my fingers or twisting my hand in my pantsleg, something to counterbalance the tension that’s building up as I force myself to be still.
If I’m in comfortable or casual surroundings, it doesn’t take more than five minutes for me to start shifting around, searching for a more comfortable position. On an airplane, for example, I’ll start out sitting with my feet on the floor, book in my hand, arms close to my sides–typical polite seatmate posture. Soon, I’ll have one leg splayed out along the aisle or tucked under my opposite thigh. When that stops working, I’ll slouch and pin both knees against the seat in front of me or turn sideways and pull my legs up to my chest or fold one leg across the knee of the other, wedging a foot against the seat in front of me.
The fact that I’ll start stimming when I can’t freely change my posture often probably indicates that the positions I use to feel comfortable are in fact themselves a form of stimming.
Reset, Relax, Repeat
My body has a time limit on any one position. Even when I’m trying to fall asleep, if I don’t nod off right away, I need to keep changing position every ten minutes or so.
When I’m still, I have a gradual build-up of . . . I don’t know what. Tension? Discomfort? Disorganization?
I start to feel more and more uncomfortable until I have an uncontrollable urge to rearrange myself. Once I move into a new position, I’ll feel comfortable–momentarily at rest. Then, gradually, the discomfort starts building and soon I have to move again. Sometimes it’s only a matter of shifting back and forth repeatedly between two positions–a trick I used a lot at university to avoid adopting too many odd slouchy postures in class.
As important as the movement–and here’s where I think the particularly autistic aspect of this comes into play–is the position of my limbs. I almost always have one part of my body pinned, pressed, squeezed or wedged against or under something–either another body part or a piece of furniture. I think this deliberate pressure creates feedback that grounds me physically. It reminds me of where my body is in space and makes me feel safe in a way I can’t describe with words.
Physically, pressure equals organization.
Perhaps it’s like swaddling a baby. Mothers have been snugly wrapping up fussy infants for centuries. There is some science to back up the practice, suggesting that swaddling calms babies by enhancing motor organization and self-regulation. Once babies reach a few months old, swaddling is no longer beneficial or necessary because they have a reduced startle reflex and better-developed motor control.
Maybe there’s something very primitively calming about the kind of pressure I’m constantly seeking–a sort of localized form of swaddling.
Or perhaps it’s simply about feedback. Given my poor sense of interoception and my strong drive for proprioceptive sensory input, it’s not surprising that I need to intentionally create a steady stream of input to remind me that I physically exist.
Thank you to everyone who helped me refine the cover art last week and cheered me on. That last mile was more difficult than I anticipated. Now I need to do some promotion so I can get my giveaway idea off the ground. Strangely, I’m really good at promoting other people’s stuff and am probably going to be terrible at promoting my own.
Another Adult ASD Research Study
This week, I received information on two more research studies. If you live to fill out questionnaires, are over 18 and have an ASD diagnosis, read on. Both studies are by being conducted by Kathrine Birt as part of her Doctoral research at Deakin University in Australia. The goal of the studies is to better understand the impact of Autism Spectrum Disorder (ASD) diagnoses on intimate couple relationship development (in adulthood).
The first is a questionnaire that takes about 20 minutes to complete. To participate, you need to be over 18 and have an ASD diagnosis. You don’t need to currently be in a relationship to be eligible, but if you are in a relationship, you’ll be presented with additional and more detailed questions. (I’ve completed both questionnaires, because I like to be sure I know what I’m sharing information about.) More info about the first study is here.
Study number 2 is for adults with ASD and their intimate partners. Both partners must be over 18 and one must have an ASD diagnosis. The questionnaire for the individual with ASD takes about 30 minutes to complete. After completion, a link is provided for a second (10-15 minute) questionnaire to be completed by that person’s partner. More information about study #2 is here.
Note that for both studies, clicking the “continue to study” button on the first page takes you to a second page with more details about things like the type of information collected, how the information will be used and privacy protections.
Not Quite a Hippity Hop
This is my new exercise ball:
I’ve been using the exercise ball at the gym after my twice-a-week workouts and decided I needed one at home. It’s a fun sensory toy and a good way to stretch and release the tension that I seem to perpetually carry in my upper back and shoulders. Once, a yoga instructor who told me that I carry my negative emotions between my shoulder blades. My slightly less interesting explanation is that I unconsciously put myself in awkward postures that create tension in my body, maybe as a kind of stim. The exercise ball is a good way to consciously check in with my muscles and release the tension so it doesn’t build up into nagging injuries.
Sadly, it doesn’t have a handle so I can’t hop around the living room on it.
Some Girl Stuff
Last week Asparagus Girl wrote a blog post about perimenopause and Asperger’s. Not much has been written about menopause by women on the spectrum so I was excited to see her tackling the subject. The post mainly focuses on mood swings, which should be called mood slingshots or mood boomerangs or something more violent and dangerous and in line with reality.Think PMS on steroids.
I’ve noticed an uptick in meltdowns over the last few years as my hormones become more wacky. I’m definitely more irritable, too, and sometimes I find myself in a strange, unpleasant moods for no obvious reason. There’s other stuff–some that’s TMI even for me–and taken together all of these changes have me wondering if women on the spectrum experience perimenopause differently from typical women. Not necessarily if we have worse symptoms, but if our funky brain wiring creates unexpected side effects of the hormone fluctuations that precede menopause.
Predictably, this isn’t any substantial research on autism and menopause. Like a lot of aspects of being an autistic adult, I’m finding the best source of information is other women who are going through or have done through the process already.
The DSM-5 was released last week. It’s still impossible to find the full criteria online anywhere, but here’s a summary of the major changes, according to a short video on the APA website.
1. Merges Asperger’s syndrome, PDD-NOS, childhood disintegrative disorder and autism into a single diagnosis of autism spectrum disorder
2. Diagnosis is now based on two criteria instead of three:
Social communication (collapsing the formerly separate social and communication domains)
Restricted, repetitive behaviors
An interesting shift is that while social communication impairments are seen as lifelong and pervasive, RRBs are not. An adult can now receive an ASD diagnosis based on current social communication impairments and a history of RRBs.
3. The addition of specifiers like age at onset, type of onset (skill loss or not), intellectual disability, verbal impairment, and co-morbid conditions present (i.e. ADHD, anxiety disorders, epilepsy). There will also be a 3-level severity scale assigned to each of the two diagnostic criteria.
Last month my daughter surprised me with a weighted blanket for my birthday. Look how adorable it is:
It’s big enough to cover me from toes to mid-torso when I’m lying flat (or cover me entirely if I curl up on my side), which is plenty. I’ve been using it in the evenings while I’m watching TV, when I need a sensory break during the day or after a tiring outing.
It’s emotionally calming and it makes me feel more physically organized. An unexpected benefit is that my moods are less spiky since I’ve been using it daily.
From the “Change is Hard” File
My old apartment was on the 3rd floor and my new apartment is on the 2nd floor. The first few times I used the elevator here I automatically hit the 3 button, got out on the 3rd floor and was halfway to my apartment before I realized that the numbers were all wrong.
Now when I use the elevator (which isn’t often, because 2nd floor), I tell myself “2 not 3”. The funny thing is, apparently I’ve been saying it out loud. The things you don’t realize until another person is around to look at you funny. Oops.
In the comments on one of the surveys, Robin shared a cool video that can help you identify if you experience a certain kind of synesthesia in which visual motion generates sound. I didn’t hear anything when I watched it but some other folks did.
Last week the blog topped 100,000 views and 3000 comments. Yay!
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.