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.
* 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.