Stimming

Which came first, the chicken or the egg?
I egged the chicken, then I ate his leg.
      — The Beastie Boys

You know that saying, which came first… Years ago, when I first met Robyn, we each showed our hand.

Robyn: Tourette Syndrome is a comorbidity of autism.

Jeff: Funny, I always heard of autism being a comorbidity of Tourette.

Do you know the term comorbidity? In medical jargon, it’s a disorder or disease that simultaneously coexists with another. Those of us with disorders give this attention. Like everyone else I know with Tourette, I can rattle off a list of our common comorbidities: OCD, ADHD, autism spectrum disorder, anxiety, social anxiety, substance abuse, depression… On the Adults with Tourette Syndrome Facebook group, these issues frequently come up for discussion. In all cases, Tourette is viewed as the primary condition. The comorbidities I listed are hitchhikers. Along for the ride.

Based on my conversation with Robyn, in the autistic community, autism is the primary condition, Tourette is seen as the extra, the add on. I guess that makes sense, people probably join the community of their most disruptive disorder. Except…

Before I stumbled upon the right medication, OCD was a very big deal in my life. As a child I triple checked (or more) lights and door locks, appliances and the back of my closet every night before bed, unable to sleep until I assured myself that no danger lurked. As an adult I selfishly and single-mindedly immersed myself in projects that detracted from my family life and in one case garnered unwanted attention from the authorities.  Even the doctor who diagnosed my Tourette Syndrome told me that OCD seemed to be the far bigger problem for me. Yet, I always see Tourette as the primary condition. I’m not sure why that is. Maybe the OCD community isn’t as fun.

One of the topics that comes up frequently in my Tourette group is stimming. More medical jargon: a self-stimulatory behavior that is marked by a repetitive action or movement of the body (such as repeatedly tapping on objects, snapping fingers, blinking eyes, rocking from side to side, or grunting) and is typically associated with certain conditions (such as autism spectrum disorder).

The Touretters often ask: Is that stimming or a tic? Tourette tics are involuntary movements or sounds such as blinking or grunting. So tics and stimming can be the exact same movements and sounds, the difference, it seems to me, is the motivation—voluntary v. involuntary.

I ruminated on this the other day. I clearly have tics. Blinking is the most prominent one. You might say Yes, Jeff, I blink too. When people with Tourette talk about blinking, they mean squeezing their eyes together as hard as they can, for several seconds. My other main tic is grunting, long and low, like a purr.

Years ago, as we euthanized our cat Lilac, I held her. I mentioned to the vet that she was purring. The vet said “Yeah, they sometimes do that when they’re scared to calm themselves down.” Stimming! My blinking tics are omnipresent. In this era of zoom meetings, I try to hold off, but I simply can’t. I squish up my eyes repeatedly, so long and hard I can’t focus when I open them back up. The grunting, however, I turn that off any time someone is near. Voluntary. Stimming.

Susan and I have talked about autism in the past. When I first started reading blogs, I gravitated to blogs written by autistic adults. They just seemed so much like me. I’m poorly socialized, don’t show emotion, avoid eye contact* and hypersensitive to my physical environment. And now I realize that I stim.

A few weeks ago, Susan mentioned that Eli’s psych class was watching Free Solo, the story of Alex Honnold’s unroped ascent of the rock-face El Capitan.** I asked “What does that have to do with psychology?”

“They’re studying autism spectrum disorder.” I pointed out that Honnold is self-diagnosed as autistic, and I suspect the teacher just wanted to watch an exciting movie in class.

The other night, as Susan and I talked about my stimming revelation, she reminded me of how I identified with all the autism blogs I used to read. She also started talking about Alex Honnold “I really saw a lot of similarities in your personalities.”

The evidence keeps stacking up, but I won’t ever pursue a diagnosis. I know from my Tourette Syndrome diagnosis that even though I already knew, hearing a neurologist say it sent me into a multiyear tailspin. My self-esteem plummeted. I don’t need to go through that again. I’ve already developed effective coping mechanisms to live a successful life. Throwing professional advice into the mix is just going to screw me up.

I’m sure this essay is part one of many. I’d love to read feedback and related personal stories in the comment section.

Peace.

* I don’t even look at myself in the mirror. I frequently walk out of the bathroom with toothpaste foam surrounding my mouth. Susan or one of my kids, suppressing laughter or annoyance, will tell me to clean it up.

**When it first came out, Susan, Eli and I saw Free Solo in the theater. One of my biggest phobias is the fear of seeing someone fall from a great height. I kept my eyes closed most of that movie.

37 thoughts on “Stimming

  1. My daughter has a neurological disorder and does a lot of stimming. She rocks for vestibular imput. She’s non verbal but makes sounds that echo. In the early years I would feel overwhelmed by what her neurologist would say and I understand that tailspin ride that you mentioned. Then I began to think, after bringing her to the doctor, am I bringing the same child home? I am, regardless of what gets said or not. Moving past that fear has been hard, but the freedom it’s brought is a game changer. Best of luck.

    Liked by 1 person

    • I read something like this and I chastise myself for complaining. I’m 100% aware that the perspective we bring to an issue makes all the difference. I get glimpses of this with myself frequently but then settle back into my whiney, poor me mindset. It all comes down to embarrassment. I’m embarrassed by my tics and by my inability to hold a ‘normal’ conversation. Even around my family. Knowing what to work on helps, but it doesn’t get me there. Thank you for sharing about your daughter. There are countless neurodivergence voices on wordpress. I’m happy I’m here.

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  2. thank you for sharing your personal insights into TS and its related issues. It’s also intersting that you mention Free Solo. It is crazy to think people engage in such an activity. And just yesterday my son and I watched The Alpinist, which is also about rock climbing, but much of it is done in severe winter conditions…

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    • After watching Free Solo, I spent some time seeking out blogs about it and offering my very negative insights. I felt (maybe still feel) that making that movie was irresponsible. I fully expected Honnold to be dead by now because the risks he took in that movie–and I assume he still takes today–fall into the when, not if category of fatal falls. At a minimum, I believe they should profile other climbers who took similar risks and died. It’s five degrees outside. I was pretty miserable scraping my car, I can’t imagine why someone would want to be on the side of a mountain in similar conditions.

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  3. All of these disorders or comorbidities DO tend to overlap. I’ve thought a lot about something that Robyn introduced to me. Highly Sensitive Person/People or HSP. I self-identified with that “diagnosis”. There are a lot of the same overlaps with HSP too.
    I’m starting to wonder if all of us with differently wired brains are a Minority Majority. Kinda like the population of California 😂

    Have you heard the term “Neurodivergent”? It’s mostly used in autism spaces, but I think it could be a bigger umbrella term to cover all the different overlapping disorders/syndromes. Sound kinda punk rock, right? 😉😂

    Liked by 1 person

    • In the library where I work, most of the people are extremely introverted. I think there’s a lot of neurodivergence there. Compared to the Y where I used to work (where everyone but me was an extrovert) the library makes me think that we are the majority. Still, the extroverts, being the more vocal party, set the bar for ‘normal’ behavior. Anything less is viewed as damaged — even by me, much to my downfall. In my comment to Biz Allen, I said I needed to flip my thinking and view my conditions not as disorders. It’s such an unfair label to put on a person’s personality and cognitive ability. I think it would have been helpful to know all this crap forty years ago.

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  4. I couldn’t quite stomach Free Solo either, and throughout the whole film, Alex did strike me as a little “spectrum”/neurodivergent. We’re all a little on the spectrum, really, and the labels are only there and useful if they can help the person gain access to help in schooling/work/socializing to make daily life easier. So no need for anyone to say it or formally diagnose anything, because, if you’re doing just fine, then keep going. Often, diagnoses in the DSM and other diagnostic guidelines require a negative impact on function in life.
    One of the girls I did my neurology residency with used to rock whenever she was driving, and often when stressed.
    Also, from my understanding, I thought the definition of tics were that they were suppressible. So they’re kind of voluntary, in that if you don’t do them, it’s incredibly uncomfortable and anxiety-inducing; it is possible to stop them, but most people don’t because it feels so awful to suppress it, and you have to eventually just let it out anyway. Has that been your experience of them? Or will they come totally unbidden and you can do nothing about it?

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    • My eye tics are only suppressible for a couple of seconds. The grunting, if I’m around people, can stop for hours (although every now and then one pops out). Strangely, I grunt the entire time I run and can only stop for fifteen seconds or so. It would be hard to say that this whole mess doesn’t have a negative impact on my life. At a minimum, it’s trashed my self-esteem. Have you ever heard of adult-onset autism? Or could this be a result of my brain injury? Although the grunting didn’t start until about 10 years after the injury. It’s nice having aa neurologist in my life 😉 Thank you

      Liked by 2 people

      • Tics are frustrating and fascinating. Hmm, I’ve never heard of adult-onset autism. I imagine though, that if your brain was wired to have some tendencies toward those features, that a brain injury would disinhibit things enough to maybe give those tendencies a more prominent outlet; potentially even years later.

        Liked by 1 person

      • Ah, sort of knock the disorder loose. My childhood tourette tics returned almost immediately after the brain injury, but it took years and years to diagnose them. I really appreciate you weighing in with your knowledge. I spend way too much time thinking about this and trying to make my own diagnoses. Really wish I could let it go.

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  5. Seen a couple of people here mention rocking. I rock from side to side to self-sooth, often without noticing, since I was young. The first time it was pointed out to me was in a mock job interview I did in high school. Also am “HSP” sensitive to some sensory inputs especially noise, and tend to shut down in overwhelming situations including social ones. My partner and I started to question if I’m slightly on the spectrum too. Stimming? Interesting thought.

    That does not sound like a movie I’d enjoy, will steer clear!

    Liked by 1 person

    • WordPress seems to be littered with people who exhibit autistic tendencies. I believe this is somehow associated with introspective/introverted people. Maybe everyone hs them but many don’t notice because they spend no time in their own head, or maybe introversion is partially caused by autism. Who knows. I supposed there are plenty of extroverted autistic people in the world. I don’t seem to rock at all, and for a person with Tourette, I’m exceptionally still. Most everything is somehow related to my face/mouth.

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      • Well I’m definitely checking the ‘introversion’ box as well. Maybe this is just the majority dynamic of people who are drawn to the hobby of writing. Anyway I guess one of the points of your post is that autism is a seperate thing from Tourette albeit a comorbidity. I don’t have any other quirks I’d consider to be ticks. Unless, like the rocking, no one has told me about them… hope I’m self aware enough I’d notice them by now…

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  6. Another great, honest post, Jeff.

    I understand your ambivalence about confirming whether you have any of the other comorbidities. (Still digesting that term and its relevance outside Covid-19.) I have a rare congenital neurological condition, and I’ve come to know and understand many of its related symptoms. I’ve adapted my life to accommodate them. But there are other things, symptoms… that I’m fairly certain are consistent with another, related neuro syndrome, but I don’t want to know for sure. I don’t want another diagnosis. Things are challenging enough, why add more if I don’t have to?

    Sometimes knowing is everything, in a positive way. Sometimes, knowing only adds to the burden.

    Liked by 1 person

    • Getting the diagnosis can be really tricky. At least for me it could have the ability to pigeon hole me into a narrow way of thinking. I have little doubt about autism now, and I already know a good deal about it. I think I might just mess up my life with another diagnosis at this late stage.

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  7. I clicked on this post on Saturday morning and saw the title and chuckled. I was in the process of opening another new trampoline for Declan. The trampoline is Declan’s tool to stim. I was opening a new one because Declan jumps on them so hard it only lasts about 4-6 weeks. As soon as I open a new one I order another one to keep in the garage. When he jumps, he grunts. He makes sounds. I liken them to what Angie refers too “his happy sounds.” I look at his stimming as something he NEEDS to do. In my mind, there is a build-up of bad chemicals – things that are hurting his muscles and he needs to find a way to release them, especially after being in school all day. I look at his trampoline as a way to cope with how his body is feeling. But yeah, definitely voluntary. During school hours he has access to a trampoline but he is very private about his jumping. He does not like people to watch especially if the big kids have friends over. During school, he has a band wrapped around the legs of his chair, which the teachers report him using all the time. So, I guess that helps too. I associate Tourette with the involuntary. I told you about the nurse at my doctor’s office. He juts out his tongue and grunts (not at the same time). Some days it is worse than others. But I always think he can’t help it and I’m sure if he could stop he would. Because the involuntary tics are always present I can see why it would be the primary diagnosis, for sure. Everything else would just be a piece of the puzzle.

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  8. Oh, also I was just thinking about Bob. We have determined that he is the one that probably carries an autism diagnosis. With him though, ADHD would be his primary diagnosis because of how much ADHD affects his every moment. He doesn’t feel the need to get an official diagnosis – it wouldn’t change anything for him. And he is a total extrovert. The reason I didn’t get to write this sooner was that he was at the mountains with friends this weekend and ALL the kids decided to have the busiest weekend ever.

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  9. Wow, Jeff. I just happened to open WP today and read your article. Eye opening as always. From a retired teacher point of view, I agree with Crustytuna. A label is only as good as the help it allows an individual to get in the school environment and, in the case of a child, the knowledge and understanding available to their parent to provide them support at home. From the standpoint of a middle aged adult, I don’t imagine a label is needed unless it helps a person allow themselves the grace to be themselves without self judgement or helps his spouse to be more understanding. It sounds like Susan’s got that one covered.

    Liked by 2 people

    • First, it’s really kind that you called me a ‘middle-aged’ adult. They’ve started giving me the senior discount at the grocery store. Susan and I have talked about the likelihood that I’m autistic over the past three or four years. I think with this stimming realization, I’m done wondering. Hopefully It helps me rather than hinders me. I was really set back by my TS diagnosis. I don’t want to go through with that again. Glad to see you around WP. been a while. Hope you’re well.

      Liked by 2 people

  10. I can relate to this a bit – I think of my main diagnosis being bipolar type II disorder, because for such a long time that was causing the most trouble in my life. But now it’s actually the anxiety disorders I have that don’t let me function at the level I wish I was.
    Cheers,
    Kait

    Liked by 1 person

    • RIght, I call my whole mess tourette, but different times, different disorders trip me up. The OCD thing used to be pretty bad, and I’ve had all the usual bouts of anxiety and depression that really disrupt my life. I’ve been reading a blog lately about bipolar disorder. The blogger has profiled Van Gogh and Cobain to help illustrate what it’s like. It’s a rough one for sure.

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