How I Diagnosed My Rare Neurological Condition after Decades of Hiding ItNEWS | 27 March 2025I have time to kill until my neurology appointment at Kennedy Krieger Institute, a renowned children’s hospital in Baltimore. I’m 42, but I traveled some 500 miles today to rectify something missing from my childhood, when I sought answers in vain about a neurological phenomenon that was virtually unknown to science. So I pop into the nearby George Peabody Library. Its colossal atrium, six stories of ornate neo-Greco alcoves, towers up and around the open marble floor. I am at a wood desk, writing freely in my notebook, when a familiar impulse comes on strong. My body begins to “motor.” Remembering I’m in public, I suppress it, as usual. But then, in the spirit of my trip, a radical and frightening whim occurs to me: What if I just did it? I look around. A lone librarian stamps books; a couple of tourists stare up at the glass ceiling. What am I afraid of?
As far back as I can remember, I did this “thing” when I was excited or engrossed. I brought my hands up, flickered my fingers against one another and grimaced. My imagination zoomed.
That’s how I played, too. When I had fun with my G.I. Joe figurines—artifacts of my 1980s childhood—rather than smashing good Gung-Ho against the nefarious Cobra Commander, as other kids might have done to breathe life into them, I would simply position the figures in front of me on the coffee table and motor—a word I use to describe my physical movements and the mental energy that drives them. In my mind’s eye, the characters brimmed with kinetic energy: flaring, vivid, cinematographic. It’s also how I drew. Each time I added a line or color, I would pause and motor, visualizing the subject like a model in my mind.
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My parents chalked it up to a childhood quirk. They assumed I would outgrow it, and in grade school it appeared I did. Having been teased about it, I began subconsciously to suppress it. It kindled up in me constantly, but only when I was safely out of sight—any time I shut the bedroom or bathroom door—did I let myself go. It never even diminished. I did it every day, throughout each day, so that I was hardly aware of it.
Motoring often derailed my focus, though. When I did homework in high school, the scenes in history books set me off. Again and again I had to find my place in the text. Once, in frustration, I bundled my fingers together with Scotch tape.
For adults, “there are basically no data.” —Harvey Singer, pediatric neurologist
There was a sinister side, too. I became hyperabsorbed in positive ideas, but in the same way, frustration, anxiety or insult could send me into a feedback loop of obsession, emotional amplification and physiological arousal. Many nights in bed when I wished I were sleeping, such episodes left me sweating, my heart racing and my brow chafed from the friction of my hands flickering against it.
Worst was the shame, the duplicity. I presented as a pretty cool kid—smart, funny, athletic, pimply yet handsome—but the grim fact, as I saw it, was that I was a freak. If discovered, my secret had the power to humiliate me beyond repair. My slim chances with the girl of my dreams would drop to zero.
The times I got caught were jarring. “Paul, you still do that?” my mother asked after glimpsing me through a door ajar. From a dark corner of the basement, my older teenage brother stepped into the light—“What are you doing?!”—and burst into laughter and mimicry. “Are you okay, man?” asked a field trip chaperone whom I hadn’t noticed in a nearby bunk.
Marino sits in his living room, in a house he built by himself on an old foundation while working as a reporter, writer, multimedia storyteller-and occasional builder. Tristan Spinski
I figured that I had manifested the thing myself, like an unsightly habit or infantile attachment, too weak of character to shake it. Time and again I scolded myself and swore off it, with no effect. I thought I must be the only person in the world who did it.
My search for answers began in the early 1990s, before Google was even a noun. In a small Massachusetts town, a pediatrician who was seeing me nodded and uttered, “Hmm,” but his pen didn’t budge. My shy description seemed to contradict itself: “When I’m imagining something, this thing happens with my hands. I don’t do it on purpose, but I can stop it.” In his defense, I suppose that kids’ morphing, innervated bodies prompt many concerns that pediatricians are accustomed to dismissing. Even if he had looked into it, there wouldn’t have been anything to find.
Harvey Singer, a pediatric neurologist at Johns Hopkins University and Kennedy Krieger, began his search for information about this condition around the same time. “We were seeing patients who were sent to us with the diagnosis of having tics,” he told me in a recent interview. “But we were saying, ‘Come on, these aren’t tics. These fit best into the category known as motor stereotypies.’”
Simple stereotypies are as common as drumming your fingers or twirling your hair. In some people, they’re more pronounced but still not concerning. I have a friend who yells “Scoot, scoot!” and claps his hands when he’s excited, for example. The term “stereotypy” comes from the Greek stereós (“firm”) and týpos (“impression”) and is a medical variation of “stereotype,” which has a similar etymology. The kids being brought to Singer were engaging in more complex behaviors, however: arm flapping, finger wiggling, grunting, grimacing, and other actions often associated with intellectual disabilities such as level 3 autism and Down syndrome. Yet they seemed okay developmentally.
Singer told me there was no significant discussion in the literature. A leading medical text at the time had just one short paragraph on stereotypies, which said more about what they weren’t—not tics, not autism, not tardive dyskinesia—than what they were. Another source, that era’s Diagnostic and Statistical Manual of Mental Disorders (DSM-III), listed a “stereotypy/habit disorder” with extreme behaviors such as eye poking and hyperventilation. A poster at the 1993 Symposium on Hyperkinetic Movement Disorders in Boston described three otherwise typical boys with “unusual, complex, repetitive stereotypic movements.” The sources contained no information on the cause, persistence, treatment or impact of noninjurious stereotypies.
“There were lots of unanswered questions,” Singer said. “The only way to get them resolved was to do it ourselves.”
After college I went West, as one does, to seek my fortune in the arts. At age 25, I wondered whether more prodigious success might arrive if this thing didn’t interrupt my writing so often. I was referred to a neurologist in San Francisco, who described my condition as a tic disorder and prescribed me guanfacine, a drug that reduces tics by interacting with neurotransmitters. The doctor said that as a side effect, the medication would make me lethargic.
Back in my apartment, I contemplated the bottle of pills. I would be trading one problem for another. I had come this far in life as I was. What I had wanted more than treatment, I realized, was a diagnosis. I tossed the pills and shelved my search for almost a decade.
In 2004 Singer’s team published a paper entitled “Repetitive Arm and Hand Movements (Complex Motor Stereotypies) in Children.” The researchers went on to produce a brain-imaging study in 2005 and a longitudinal follow-up of 100 pediatric patients with CMS in 2008. Prior scholarly descriptions had postulated psychogenic causes, but the findings from Singer and his colleagues suggested biological ones. Almost half of the children in their studies had neurological comorbidities—attention deficit hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD), tics—implying some biochemical or neuroanatomical commonality. What’s more, a Mendelian pattern of inheritance appeared: a quarter of the study participants’ families reported a relative with motor stereotypies, suggesting a genetic factor.
Singer’s quest to understand CMS happened to correspond with major advancements in brain research, imaging and genetics. In 1986 researchers from Johns Hopkins and the State University of New York Upstate Medical University identified a neuronal pathway that regulated motor movements. Complex and fluid, the cortico-striato-thalamo-cortical (CSTC) loop relies on several neurotransmitters. Signals travel from the frontal cortex, which processes emotions, attention, social cues and impulses, inward to the striatum, part of the basal ganglia, which determines the appropriate motor responses. From there the signals advance through the thalamus, a switchboard for motor signals, and back to the motor cortex, which commands the body to execute movements.
The advent of functional magnetic resonance imaging (fMRI) in 1991 and the launch of the Human Genome Project in 1992 helped to revolutionize the etiology of movement disorders. Researchers discovered gene mutations associated with Huntington’s disease and Parkinson’s disease. Johns Hopkins got its first fMRI machine in 1999, which helped scientists more firmly link dysfunction in the basal ganglia, in the deep center of the brain, to Tourette’s syndrome and dystonia, which causes involuntary muscle contractions. Further work connected multiple movement and emotional disorders to the CSTC loop. Parkinson’s was linked to dopamine deficiency in the striatum, and Huntington’s was linked to degeneration in the striatum and atrophy in the frontal cortex. Tic disorders, OCD and ADHD were all strongly associated with CSTC abnormalities.
Finger flicking is an outward display, driven by what's happening in Marino's mind. His highly repetitive movements have been the same since he was in grade school. Tristan Spinski
In 2005, when Singer conducted an imaging study of CMS, he found that the children being referred to him had significantly reduced volume in parts of the CSTC loop. In 2010 psychiatrist Roger Freeman of the University of British Columbia and his colleagues published “Stereotypic Movement Disorder: Easily Missed,” a study of 42 children. In 2016 Singer and his co-workers documented reduced levels in the cortex of the CSTC’s inhibitory neurotransmitter, known as GABA. Their most recent fMRI study, in 2021, revealed reduced connectivity between the prefrontal cortex and the striatum, a branch of the CSTC associated with goal-directed behaviors.
These findings and those of other researchers were lining up. Children tended to present stereotypies at around two years of age. The movements varied—arm flapping, finger flickering, grimacing, rocking—but the triggers were the same: excitement, engrossment, boredom, anxiety. And a simple distraction could suppress them. The movements almost always persisted into adolescence, although most children “privatized” them like I had. Freeman even noted a possible role of the syndrome in creativity.
Clearly influenced by the research, the DSM-5, released in 2013 and not updated until 2022, dedicated several pages to stereotypic movement disorder, the diagnostic name for CMS. It included refined diagnostic criteria and sections on its onset time, prevalence, persistence, possible causes and comorbidities. But because studies so far have all involved pediatric patients, what happens after adolescence remains a mystery. For adults, “there are basically no data,” Singer said.
In my early 30s, after relocating and switching careers multiple times, I found myself studying journalism in New York City. People there understand that riders of the subway include the rarest subsets of humanity. Once, stepping off my train, I glimpsed a man flapping his hands near his face, which restarted my yearning to know, above all, whether I was alone.
This time, armed with search engines, I looked up every relevant term I could think of: “hand flapping,” “spasms,” “trance.” I shuffled through page after page of links about autism. Adding the term “suppressed” led me to a video of a man with Tourette’s bravely demonstrating the true, private intensity of his tics; painstakingly, I even read the comments. Number 75 was from someone named Digibullet23. When I read this person’s words, I knew right away. “I have Tourette’s, it’s all I think it could be,” Digibullet23 wrote. “Besides being caught by a cousin in the dark years ago, I have been able to hide it from everyone.” Our movements sounded almost identical: “I get overexcited, I put my hands to my face with a couple fingers out on each side for a few seconds. It’s really hard to explain.”
Although we were strangers, we were so glad to relate our experiences.
Like a sign of life underneath the rubble, Digibullet23’s testament lit new fervor in my digging. The answer seemed imminent. I quickly found the Johns Hopkins web page on motor stereotypies. Mouth agape, I read the studies by Singer and Freeman. I wept, laughing tears of relief.
Even self-diagnosis can be life-changing. I had always lacked effective language to articulate or legitimize this thing, but now I could invoke a bona fide medical term to help explain myself, find information and connect with other people like me. I joined dedicated support groups on social media with thousands of members worldwide. The people were mostly parents of children with CMS, but I found several adults, too, whom I contacted by phone. Although we were strangers, we were so glad to relate our experiences that, in a few cases, we spoke for more than an hour.
The hereditary factor, coupled with secrecy, produced incredible stories. Wendy C., 47, of Hertfordshire, England, with whom I spoke again recently, had never heard of CMS when the behavior appeared in her young daughter. Only later did Wendy reveal to her husband that, in private, she did the same thing. They did some research and relayed their discovery to the grandparents. That’s when Wendy’s mother came out: so did she!
Similar midlife revelations are common for conditions that are hard to explain, stigmatizing or unfamiliar to physicians. A surgeon with Tourette’s, Carl Bennett—a pseudonym given him by neurologist Oliver Sacks when he described the doctor in a 1992 New Yorker article—was 37 when he first heard his condition named and described on a radio program. Bennett’s wife later told Sacks about that moment: “He got all excited and hollered, ‘Helen, come listen! This guy’s talking about what I do!’” That was in 1977, three years before Tourette’s was added to the DSM. “He was excited to hear that other people had it,” she said. “It was good to put a label on it.”
Of course, I had labeled myself. But I still couldn’t be sure that what I had was CMS.
In 2023 Singer and researchers at Yale University published a DNA-sequencing study of 129 parent-child associations in which the child had CMS, as well as 853 controls. It identified at least one gene associated with CMS. But there’s no getting rid of the condition. “We don’t have any great medicine that’s been identified,” Singer said. Donald Gilbert, a pediatric neurologist at the University of Cincinnati College of Medicine, who trained with Singer, said there are situations where stereotypies are so problematic for a patient that he might prescribe an antiadrenergic agent. He’s interested in a new dopamine blocker, ecopipam, but it is not yet approved by the U.S. Food and Drug Administration for tics. If kids are motivated, Gilbert also recommends a cognitive-behavioral therapy program developed by Singer’s clinic.
Handling the symptoms “starts with awareness training,” said clinical psychologist Matt Edelstein, who conducts the CMS program at Kennedy Krieger. “We want kids to be able to think about their bodies and self-monitor when they’re engaging in stereotypies.” Edelstein uses a game-based approach with patients as a nonaversive introduction to suppression. He concedes that suppression is a skill children may find on their own, as I did—in my uninformed and isolated kind of way. I like his approach better. “Stereotypies aren’t bad, and we’re never going to talk about them as being bad,” Edelstein said; he uses the word “phenomenon” instead of “disorder” to describe them.
As a child and teenager, Marino instinctively suppressed his motor stereotypies when people were around. Today he still largely refrains from motoring in public, but now that he finally has a diagnosis after decades of searching, he has accepted his condition and is more transparent about it. Tristan Spinski
Edelstein and Singer both confirmed something else evident on social media forums: many parents worry about their kids’ CMS more than the children do. According to a recent Pew Research Center survey, U.S. parents’ top concerns for their kids are mental health and bullying. To reduce movements, some parents have tried heavy metal detoxifiers, acupuncture and elimination diets. Many parents, however, seem to think a better approach for children would combine education, self-awareness and teaching their kids to accept themselves as they are.
After all, CMS isn’t all bad. Like “islets of ability” in people with autism and reported advantages of ADHD, CMS may have a silver lining. Freeman aired this perspective early on. “Most children said they liked their stereotypies,” he and his co-authors reported in their 2010 paper, noting a positive connection to fantasy, daydreaming and visualization.
Tammy Hedderly, a pediatric neurologist at Evelina London Children’s Hospital, found that children with CMS often experience detailed visualizations while motoring. In a 2016 paper, she and her colleagues describe intense imagery movements (IIM) as a subset of CMS. “It’s almost, in some children, like a superpower,” Hedderly said, “and not something to be pathologized.” Of the adults she has diagnosed with the condition, a remarkable proportion are architects, designers, writers, producers, musicians, artists and “numbers people,” she told me.
“It’s part of my experience through my own consciousness,” said Byrne Klay, a 45-year-old man in Maryland who self-identifies as having both CMS and IIM. A professional musician and visual artist, Klay belongs to the small and brave contingent of people who don’t suppress their stereotypies in public. His bandmates are used to him pulsating his fists and grimacing during rehearsal. Klay, who plays about a dozen instruments, said that when he’s motoring, he can visualize music and abstract ideas vividly—“I’ll see it, I’ll hear it, and that’s when the movements are prone to come out.” He said he wouldn’t get rid of his CMS if he could.
All I can do is own it.
Like me, Klay has learned on his own to use self-awareness to emotionally regulate and avert prolonged, toxic episodes. When I recognize that my condition is diverting me from important tasks or absorbing me in a negative fixation, I bring myself back to reality gently and without reprisal. “Okay, buddy, stay focused,” I tell myself.
Hedderly recommends mindfulness or a modified form of cognitive-behavioral therapy to people so they can enjoy IIM when it’s constructive. Her aim with patients is to prevent them from becoming “maladaptive daydreamers.” Although this term is not listed in DSM-5, researchers have used it to describe excessive, vivid daydreaming that is frequently accompanied by motor stereotypies. Potato, potahto.
How adults with CMS fare in life is something that Singer and I both want to know. His team is currently conducting an adult quality-of-life study that should tell us. “It’s interesting that the movements themselves didn’t appear to be inhibiting,” he said about the data so far, “whereas the psychosocial aspect of quality of life was more of an issue.”
In the George Peabody Library, I’m thinking of Freeman. He has retired, and I couldn’t interview him for this story. I spoke to him several years ago, however, and he shared a vision that struck me as unthinkable. He suggested that a better world would be one in which we did not pathologize CMS but erased its stigma. “You don’t understand,” I told him. I insisted that what I do is alarming, grotesque. He replied that social norms are relative and change constantly. I’ll never forget him reminding me that people used to go around spitting tobacco juice in public. “They had spittoons in post offices and banks,” he said. “Can you imagine?” People with CMS ought to motor in public and let others get used to it, he said; they would feel much better about themselves.
I decide to test his hypothesis. Here’s to you, Dr. Freeman, I say to myself. I do a little finger flickering like I would at home alone. It looks like I’m casting a hex on my notebook. I feel comically exposed, as when I forget my towel after a shower and streak past the front windows. There, that wasn’t so bad. No one’s even looking. Now I really go for it. I bring my hands up to the sides of my nose and let them motor intensely. My face widens out in a big lemon juice grimace, and my imagination whirls—this place, this trip! It’s a rush!
I look around. The librarian keeps right on stamping, unfazed. The tourists might have glanced, but I doubt they think any less of me. It’s not like they’re pointing and conferring, and anyway, what do I care what they think? Only if we dare to be our authentic selves can we feel accepted—that’s the kind of advice I love to shell out, but when it comes to myself, I’ve been a hypocrite.
When I get to Kennedy Krieger, I expect one of Singer’s protégés to meet me, but to my surprise, Singer enters the room to see me himself. With a white goatee and glasses, he seems grandfatherly—not at all pedantic or commanding, as I had feared, but warm, mild-mannered and earnest. I’m comfortable enough to demonstrate my movements. To rule out other diagnoses, he has me track his pen light with my eyes, do a little math, hop on one foot. He asks me what triggers my movements, what inhibits them, whether I feel any premonitory urge and what makes them stop. “You’ve either read all the research and are faking it very well,” he says to me, facetiously, “or you’ve got complex motor stereotypies.”
It’s what I expected, but I needed to hear it. Singer offers to answer any questions, although he admits there is still a lot to learn about CMS. He introduces me to his assistant so I can participate in the adult quality-of-life study. He notes that behavioral therapy is available now for adults, but that doesn’t much interest me. I’ve already resolved what troubled me most: uncertainty.
Outside the hospital, heading back to the airport, I descend the Baltimore subway stairs feeling an odd mix of satisfaction and disappointment. A long journey is over. I officially belong to the 15 to 20 percent of the population considered neurodivergent, whose brains, for better or worse, are atypical. All I can do is own it. At the turnstile a middle-aged man in stylish street wear blurts out Tourettic mandates as he strides past me with a confident gait. No one but me looks twice.Author: Mark Fischetti. Paul Marino. Source
