Pathologically Genuine V (draft): The Joy of Stimming

I would often hum softly while banging my head and would enter a state of calmness only achieved by Zen Buddhist monks and golden retrievers when five people are petting them...

I stim. I stim a lot. I cope by stimming. I relax by stimming. Stimming for me is a form of meditation as it allows me to quiet my mind. I can be at peace or even happy while stimming. My wife and many of my colleagues would prefer I stop stimming. That is just not going to happen. Asking me to stop would be like asking our golden retriever to stop loving being petted by people.

Stimming, also known as “stereotyped or repetitive motor movements” is often associated with autism and appears to be often misunderstood by people that don’t stim¹. Although these repetitive behaviors can seem odd or even anti-social to neurotypical people, it is clear that these behaviors are important adaptations for many autistic people^1,2,3.

If you’re not autistic, or even if you are, you probably have looked askance at someone flapping their hands, spinning in circles, rocking back and forth, humming, banging their head in the back of a car or to go to sleep, or repeatedly jumping, even when there is not a trampoline nearby. Or you might have been in a meeting with someone you never met who is twirling their hair, twirling a pen, or shaking their leg while they seem to you to struggle to find words or speak at a slower pace. If you have, you might have even thought to yourself that those people are weird and wondered if they have just eaten some THC gummies or magic mushrooms. That is certainly a reasonable hypothesis, if you have never heard of stimming behavior and/or went to school in the 1970s with a lot of people who were stoned most of the time.

One reason you might think stimming is drug related is that you might notice how pleasantly detached, calm or happy someone looks while they are stimming. You probably would feel that way if you had ever noticed me in a real or virtual room such as hanging in out in a living room, at a meal, at a bar, on a flight or in an airport lounge, in a virtual or in-person meeting, in any kind of theater or stadium, simply hanging out with me on our deck, or spied me at a stopped traffic light. What you would see is me lightly touch my nose, beard, or forehead and then immediately after the light touch, you would see me rub the area I touched with my fingers. It’s ethereal.

If you knew me a little bit when you saw me stimming, you would do what many colleagues do and ask me if I have a headache or a cold. I would answer something to the effect “oh no, it is just a habit I have.” I don’t think I have ever gone a step further and responded with the actual truth. “No, I am fine. I am doing this because I need pleasant sensory stimulation. I do this when I am exhausted, anxious, stressed, bored by the situation or you, or need to disappear from the neurotypical world into my mental equivalent of a turtle shell where I can, as Claudia Emerson⁴ wrote, “soar fearlessly inside myself in a safe dome of starless heaven.”

Stimming: the early years

When I was young, I banged my head against a chair and the back seat of the car. If you drove by my family’s car on the Pennsylvania Turnpike, I very well might have been in the back seat banging away in a state of near bliss causing you to distract yourself leading to your car veering off the highway. Who knows how many car accidents I was responsible for with this stimming activity.

I also could not go to sleep without banging my head against my pillow, often while humming. Fortunately, I was lucky enough to have my own room as a child along with a supportive pillow. I am not sure if I would have survived, or at least ever slept, if I had to share a room with an older brother with a temper. My older and only brother is my hero. He does not have much of temper. But he did throw my mattress out the window one time. I don’t think the reason he had anything to do with stimming, but perhaps it did. More likely, he did so in response to being an annoying little brother. Being autistic does not mask the annoying symptoms of being a little kid who worships their big brother. This is to make the point that not every annoying or weird behavior I exhibit is driven by being autistic.

I banged my head until I was ten or so. I think I finally was able to break that stimming ritual when I went to summer camp and feared being ostracized or waking up with the other kids having tied my head down to the bed or carried my sleeping body into a canoe and pushed me out into the middle of the lake without any paddle. Life often felt to me as an autistic person like being in a boat trying to go upstream against a strong current without a paddle. So, I was scared to have that feeling turn into a real situation at summer camp. Paddling upstream with your hands, and no paddle, was exhausting and hopeless.

One of the wonderful things that happened to me when I was diagnosed as autistic is that I had an epiphany. It became clear to me that paddling up stream without a paddle was stupid and unnecessary. Accepting and understanding my autistic traits led me to have a much better idea. I turned my boat around and floated with the current.

Back to stimming. Banging my head was not an attempt at self-flagellation nor did it damage me physically in any way. Rather, it was an amazing calming activity. I would often hum softly while banging my head and would enter a state of calmness only achieved by Zen Buddhist monks and golden retrievers when five people are petting them. I understood that the behavior of banging my head was not normal and wanted to stop, even though I fought against being “normal” for as long as I can remember. In many ways it is unfortunate that I had to succumb to normality, because the calming effect is etched in my memory as being almost ethereal.

In third grade, another type of stim emerged. I remember this well because I had a teacher named Mrs. Jerpe (Mrs. Jerky to my third-grade cohort). I apparently started to twirl my hair around my finger and then pull it out during class. I vaguely remember it feeling quite good, sort of like being lightly touched by someone you love. But I also remember Mrs. Jerky informing my parents that I was doing this and noting that I had created a bald spot on the top of my head making me look like a 50-year-old balding man. I don’t remember what happened next. I know I wasn’t punished or anything. But I stopped twirling my hair. Normality won.

Somewhere around 8^th or 9^th grades, I developed a new stim that I continue to do to this day. Below are some pictures of objects that made this new stimming behavior possible. These include metal tobacco pipe cleaners, unfurled paper clips, pen caps, toothpicks, the temple end of sunglass frames and sharp pencils. These objects are now as important to my life as oxygen and pizza. There are times when those objects aren’t available. In those cases, my pinkies and index fingers can do the job.

My stimming devices

My early- and mid-teens were an extraordinarily grim time for me. We moved from Pittsburgh to West Hartford and then Bloomfield, Connecticut. Moving as 12-year-old, mid-year, is hard enough for any kid. It was especially hard for me for two reasons:1) I had an idyllic childhood living on a street with like twenty kids my own age (which enabled me to be unaware of being socially awkward), a best friend forever (except he committed suicide in his thirties), and a dog that followed me everywhere. All of that disappeared completely when we moved; and 2) It was around that age that I started to feel like the runt of the group who didn’t belong. Moving to a new school, in a new place, turned that feeling into an extraordinarily harsh reality. It was clear that I did not belong, did not know how to make friends, and was bullied a little bit. Loneliness and isolation were the most common feelings I had. My dad felt extremely guilty for moving me and anxious about moving away from his mother and bachelor uncles. His way of dealing with that anxiety and guilt was to try and convince me every evening that my social life was great and that other kids really liked me. His anxiety about me wanting to feel that way just made things worse. I was unhappy about feeling lonely and isolated. The pressure to be social, and the denial of my struggle, ended up having the opposite effect. I just leaned into gloominess, bottled up anger, and isolation even more. The good news is that I dealt with some of this by playing the guitar.

My brother, my hero, was seven years older than me, so he was in college when we moved. So, I was essentially an only child without any close friends. Both of my parents worked- my dad worked all the time. So, I often had the house to myself.

Being lonely meant I spent way too much time alone at home on the couch in our family room. My dad occasionally smoked a pipe back then and he had a metal pipe cleaner. I discovered that the pipe cleaner was a great tool to sort of tickle the side of my nose, especially given my oily teenage skin. I would lightly rub against my nose causing a pleasant tickle that led to me rubbing my fingers against my nose to stop the tickle, which felt great. So, I would just do this over and over again. Sometimes for hours. And, while I did that, my anxious mind would slow down. Thoughts would just flow in and out of my consciousness as if I were mediating. The pain of loneliness couldn’t compete with the pleasant sensory stimulation of the pipe cleaner. And time, which can feel excruciatingly slow when one is lonely, moved by more quickly.

Stimming: the College, Graduate School, and Postdoc years

I stimmed a lot. I got good at stimming. The rigorous practice of stimming allowed me to learn exactly how to lightly touch the spots on my face that gave me the most positive sensory stimulation.

When I moved away for college, I had to find replacements for the pipe cleaner. I must admit that during my first two years at the University of Maine, there was a lot of pot being smoked and it is easy to find a pipe or a bong. But no one used pipe cleaners. So, unfurled paper clips, Bic pen caps, toothpicks, sharp pencils, and the temple tip. and sunglass frames became essential items.

I also grew a scraggly beard in college. The beard hair or stubble gave an even greater sensory sensation when touched with one of my instruments of sensory pleasure. I studied in the library for probably at least 60 hours a week. Stimming my nose or my beard became an essential piece of studying, even though it made me less efficient.

Fast forward to my time as a postdoc. I spent 80 or more hours a week in the laboratory. There were a lot of boring tasks in research, many included pencils, and a lot of stress. So, I must have tickled my beard on both the left and right side of my chin with those pencil ends to a point where two small bald spots developed on the left and right side of my chin. It really looked weird even if I shaved. This exacerbated the lack of self confidence in social situations, but it didn’t stop me from stimming. A year or so later the hair follicles recovered their ability to produce keratin. And despite still stimming, they seem to function appropriately other than making gray instead of brown strands of hair.

Stimming the Adult years

There really isn’t much of a story to tell about stimming once I started as an assistant professor. There was a lot of pressure for new faculty to produce enough research and teach well enough to get tenured. I worked between 80-100 hours week, completely convinced I would never get tenure. So, this was a time of high anxiety and exhaustion. And it was time of deep loneliness having still not found a committed relationship with a woman. So, as you can imagine, touching my nose and face with my stimming implements and they rubbing them didn’t subside.

At this time in my life, I had acquaintances and many situational friends (people I worked with or taught). But I don’t know if I had any close friends. I think another trait of my autism is not really understanding appropriate expectations for people who are acquaintances vs. situational friends vs friends. I only understood that when I started volunteering with Brea (my pet therapy dog) at the 4-12 grade school for autistic kids very recently because it is part of their curriculum to help autistic students understand those different human relationships. This is only important because I am not sure that there was anybody at this time in my life who would have been willing to tell me anything about how they reacted to my stimming in activities like faculty meetings or departmental seminars.

I don’t remember a lot about stimming during this time of my career. Being autistic, and not knowing I was autistic, I think enabled me to be blissfully unaware whether I was stimming in front of other people or blissfully unaware that those people might be distracted by that behavior and/or wonder what the hell was wrong with me.

In any case, stimming as often as I did was not a significant liability in my career. I was promoted early to associate professor and started a successful senior administrative career administrative career when I was thirty-seven, quite young to start a dean/vice president for research role. In retrospect, it is amazing that stimming never seemed to be a problem in my career. I am sure that I was guilty of touching and rubbing my nose and/or forehead in all kinds of situations where I was tired or anxious including activities like university board meetings, meetings with presidents, provosts, deans, faculty, and potential donors. And having an unfurled paper clip was also an essential tool when I was at my desk plowing through emails, working on manuscripts/policies/reports, and/or talking on the phone. I suspect I even stimmed during campus job interviews for positions of dean and provost.

I don’t think I realized that repeatedly touching and rubbing my nose. my beard, or my face with various tools might be distracting to anybody else. I only became aware of that after I got married. According to my wife (Adele), stimming the way I do makes it difficult to talk with me during dinner, and can be frustrating and distracting in conversations. It appears to also be annoying when driving in a car with me or sitting next to me pretty much anywhere including just sitting in the living room watching TV.

Adele would occasionally be embarrassed when I stimmed. I have come to accept that loving an autistic person like me involves extraordinary patience including tolerating embarrassment in social situations where I am simply clueless with respect to how I might be affecting others. I have a great deal of gratitude that she endured this behavior for the twenty-seven years we have been married, even though it sometimes made her angry, as do a number of my behaviors. We didn’t have any understanding of my underlying need to stim until I was diagnosed as autistic twenty years into our marriage.

One thing that helped us both understand that my odd behavior wasn’t some personal flaw that I could just fix, was recognizing that my. aunt and her daughter both tickle their nose with their eyeglasses in the same way that I do and without a recognition they are doing it, just like me. It was relieving for both of us to see them exhibit stimming behavior, because it enabled us to attribute the weirdness of stimming to the general weirdness of most of the members of my family.

Being diagnosed as autistic was freeing in a way that was good for me, but perhaps not for others. It really enabled me to accept how important stimming is to me as a mechanism to calm my mind allowing me to think more clearly and providing sensory stimulation that enables me to tolerate exhaustion, anxiety, or to escape into my mental turtle shell.

A challenge in managing autism is that some therapists believe that stimming behavior is bad or anti-social. I get that. But some research is showing that stimming can be beneficial to autistic people and needs to be viewed in that context^1,2,3.

I think of it like this. I love Golden Retrievers. If you love a golden retriever, you are just going to have to accept that the love they give is worth their desire to chew, eat socks, towels and potholders and their need to accompany and supervise you every time you need to go to the bathroom. It is just part of the breed. This view is a very apropos comparison for me. I had an executive coach who told me, in a positive way, that I am a golden retriever. The only difference really is that our golden retriever needs us to give her sensory stimulation through gentle petting as often as possible and she can convince us to provide that stimulation even when we don’t want to. I haven’t found anybody that thinks I am cute enough to do that for me, so self-stimming has been a great and probably the only option.

You gotta love the stim! But not everyone around will feel the same way.

References and more about Stimming

¹Kapp SK. Steward R, Crane L, Elliott D, Elphick. C. Pellicano E, Russell G. 2019. People should be allowed to do what they like’: Autistic adults’ views and experiences of stimming. Autism 23(7) 1782-1792. doi: 10.1177/1362361319829628.

Abstract

‘Stereotyped or repetitive motor movements’ are characterised as core features in the diagnosis of autism, yet many autistic adults (and the neurodiversity movement) have reclaimed them as ‘stimming’. Supported by a growing body of scientific research, autistic adults argue that these behaviours may serve as useful coping mechanisms, yet little research has examined stimming from the perspective of autistic adults. Through interviews and focus groups, we asked 32 autistic adults to share their perceptions and experiences of stimming, including the reasons they stim, any value doing so may hold for them and their perceptions of others’ reactions to stimming. Using thematic analysis, we identified two themes: stimming as (1) a self-regulatory mechanism and (2) lacking in social acceptance, but can become accepted through understanding. Autistic adults highlighted the importance of stimming as an adaptive mechanism that helps them to soothe or communicate intense emotions or thoughts and thus objected to treatment that aims to eliminate the behaviour.

² Nwarordu G, Charlton RA. 2024. Repetitive Behaviours in Autistic and Non-Autistic Adults: Associations with Sensory Sensitivity and Impact on Self-Efficacy. Journal of Autism and Developmental Disorders 54:4081-4090. https://doi.org/10.1007/s10803-023-06133-0

Abstract

Purpose: Restricted and repetitive behaviours are a core feature of autism diagnoses but have not been widely studied in adulthood. This study examined the rates of and associations between repetitive behaviours and sensory sensitivity in autistic and non-autistic adults; and whether repetitive behaviours described as “stimming” impacted coping with difficulties (self-efficacy). Methods: Diagnosed autistic (n = 182), undiagnosed autistic (n = 163) and non-autistic (n = 146) adults completed online measures of repetitive behaviours, sensory sensitivity, and self-efficacy for when able and not able to stim. Results: Repetitive behaviours and sensory sensitivity correlated significantly in each group, although ratings were higher in autistic compared to non-autistic groups. When people were able to stim, no differences between the groups were observed on self-efficacy ratings. However when unable to stim, autistic people reported lower self-efficacy than non-autistic people. Conclusions: Results suggest that repetitive behaviours are significantly associate with sensory sensitivities. Rather than repetitive behaviours being viewed as negative, stimming was associated with increased self-efficacy. Results suggest that stimming may have beneficial effects. Further work is needed to better understand how repetitive behaviours and stimming manifest in adulthood, how they change over time and their effects for autistic adults.

³ McCarty, MJ, Brumback AC. 2021. Rethinking Stereotypies in Autism. Seminars in Pediatric Neurology 38:1-6. https://doi.org/10.1016/j.spen.2021.100897

Abstract

Stereotyped movements (“stereotypies”) are semi-voluntary repetitive movements that are a prominent clinical feature of autism spectrum disorder. They are described in first-person accounts by people with autism as relaxing and that they help focus the mind and cope in overwhelming sensory environments. Therefore, we generally recommend against techniques that aim to suppress stereotypies in individuals with autism. Further, we hypothesize that understanding the neurobiology of stereotypies could guide development of treatments to produce the benefits of stereotypies without the need to generate repetitive motor movements. Here, we link first-person reports and clinical findings with basic neuroanatomy and physiology to produce a testable model of stereotypies. We hypothesize that stereotypies improve sensory processing and attention by regulating brain rhythms, either directly from the rhythmic motor command, or via rhythmic sensory feedback generated by the movements.

⁴Emerson, Claudia. 2005. Late Wife: Poems (Southern Messenger Poets), Louisiana State University Press.