A Writer’s Guide to Tics and Tourette Syndrome

This article on Tourette syndrome for writers is part of the Science in Sci-fi, Fact in Fantasy blog series. Each week, we tackle one of the scientific or technological concepts pervasive in sci-fi (space travel, genetic engineering, artificial intelligence, etc.) with input from an expert. Please join the mailing list to be notified every time new content is posted.

The Expert: Josh Michaels

Dr. Joel Shulkin is a developmental-behavioral pediatrician and former USAF physician with over fifteen years’ experience diagnosing and treating children with developmental disorders. He writes medical thrillers and dabbles in SF/F thrillers and YA Fantasy. He is represented by literary agent Lynnette Novak of the Seymour Agency, and his debut medical thriller, Adverse Effects, will be available in 2021 by Blackstone Publishing. You can find him on Twitter @drjoelshulkin and @DevMedDoc, FaceBook/Instagram @drjoelshulkin, and on his website https://authorjoelshulkin.com.

Writing Tics and Tourette Syndrome

Captain Hardcastle was never still. His orange head twitched and jerked perpetually from side to side in the most alarming fashion, and each twitch was accompanied by a little grunt that came out of the nostrils … Rumour had it that the constant twitching and jerking and snorting was caused by something called shell-shock, but we were not quite sure what that was. We took it to mean that an explosive object had gone off very close to him with such an enormous bang that it had made him jump high in the air and he hadn’t stopped jumping since.

–Boy: Tales of Childhood by Roald Dahl

Many guides to writing story characters recommend using mannerisms or “nervous tics” as a way to identify one character from another and to convey body language. Unfortunately, writers often confuse true tics with habits or stereotypical movements. While this may not seem such a big deal, misidentifying a character can disrupt the illusion of reality for a savvy reader, and also can further misconceptions of conditions like Tourette Syndrome (TS). This blog post reviews some of the complexities and considerations in writing about tics and TS.

The Basics of Tics and How to Write Them

Definitions

First, the correct spelling is tic, not tick. The word tick, of Germanic and Middle English origins, is defined as 1) a short, sharp sound, as by a clock or watch; 2) a mark that indicates an item in a list has been chosen, similar to a check; 3) the fabric case of a mattress; or 4) a wingless, bloodsucking arachnid that spreads disease.

A tic, on the other hand (derived from the Italian ticchio, meaning twitch) is a sudden, repetitive, nonrhythmic motor movement or vocalization.

Types of Tics

Common types of tics include:

• Motor tics such as eye blinking, shoulder shrugging, and head jerking
• Phonic tics such as throat clearing and grunting

Tics can be further classified as simple or complex. Simple motor tics are generally brief movements involving spasmodic, non-rhythmic muscle contractions, including the ones mentioned above as well as facial grimacing, hand clapping, and neck stretching. Complex motor tics, which are less common, involve more coordinated movements such as pulling at clothing, echopraxia (imitating someone else’s movements), and copropraxia (involuntarily performing obscene gestures).

Simple phonic tics can be any brief, repetitive noise, such as sniffing, while complex phonic tics include echolalia (repeating someone else’s words), palilalia (repeating one’s own previously spoken words), lexilalia (repeating words after reading them), and coprolalia (spontaneously uttering obscene words or phrases).

Tics can be transient or chronic. As many as 20% of all school-aged children experience transient tics at some point during their lifetime. Transient tics typically do not require any specific treatment as they are short-lived. A chronic tic persists longer than six months. According to the Diagnostic Statistics Manual, 5^th Edition (DSM5), symptoms of a tic disorder must start during childhood or adolescence (before 18 years of age) and cannot be due to another specified medical condition (such as Huntington Disease or post-viral encephalitis) or be secondary to use of medications or drugs.

Tourette Syndrome

Tourette’s Syndrome, often considered the more severe form of tic disorder, is named after Georges Gilles de la Tourette, the French physician who first described the symptoms of TS in 1885. It is a chronic condition involving the presence of both motor and phonic tics (although they can occur at different times) for more than a year. The tics do not necessarily occur daily, and in TS, they more commonly wax and wane in what’s termed a “cluster of clusters”. TS sufferers may be tic-free for months, only to experience a bout of frequent tics.

The prevalence of TS is estimated to be 4-8 people per 1,000 individuals and appears to affect males more than females by a ratio of 4:1. The prevalence appears to be similar among ethnic groups but is uncommon among African Americans and sub-Saharan Black Africans.

Tics Versus Habitual Behaviors

In lay speak, the term tic is often used to describe any idiosyncratic or habitual behavior. For example, saying “Um” when speaking, or the 80’s fad of saying “Like” every other word are both commonly referred to as verbal tics, while hand-wringing and tapping one’s foot are often considered motor tics. In truth these would be better called mannerisms or habits.

Despite the adage, “Old habits die hard,” mannerisms can be altered with minimal discomfort, if not some effort. If someone wants to stop drumming their fingers on a tabletop, they can do so. These habitual, repetitive movements can also be called stereotypies, which are often associated with, but are not exclusive to, autism spectrum disorders. Autistic children, and non-autistic children with stereotypical movement disorders, can display intense, sometimes painful-appearing movements like facial grimacing and whole-body rocking. Performing these movements, however, do not cause them distress. More commonly, they derive comfort from performing these movements or behaviors.

Tics, on the other hand, are compulsive in nature. Most tic sufferers describe a feeling of pressure, pain, itch, or discomfort, like a “bubble” that builds inside them and only “pops” once they perform the tic. Although children may not be aware of their tics, by adulthood sufferers of chronic tics are acutely aware of them. Performing the tic, while relieving the pressure, also causes great distress that is only matched by the discomfort of not performing the tic. Tic sufferers are often embarrassed by their tics and try to hide or mask them, which can, in turn, intensify the tics.

That’s the thing about my tics. If I try real hard, I can delay them, but I can’t make them go away. It’s like having a bad itch. You can ignore it for a little while, but it’s going to build up until you scratch. I’ve learned tricks to hide my tics. Like sometimes I’ll drop a pencil on the ground, then when I bend down to get it, I’ll blink or grimace like crazy. I’m sure the kids around me think I’m really clumsy be- cause sometimes I’ll drop my pencil four or five times in one class.

-Michael Vey, The Prisoner of Cell 25, by Richard Paul Evans.

Tics must be differentiated from other uncontrolled movements. Whereas epileptic movements are rhythmic (also termed clonic) and cannot be suppressed, tics are jerking or twitching and non-rhythmic, and can be suppressed (although this may cause discomfort). Similarly, neurologic movement disorders such as chorea, athetosis, and dyskinesia cannot be suppressed and do not have premonitory sensations.

Etiology: Causes of Tics

Tics are believed to result from disturbances in mesolimbic circuits in the brain, which disinhibits the motor and limbic systems. Some neuroimaging and functional imaging studies have identified possible differences between individuals with TS and neurotypical controls, but to date there is no precise anatomic localization or pathway for the expression of tics. There is little to no evidence that autoimmune or post-infectious conditions play a role in the development of TS. Despite multiple genetic studies, no single or even multiple causative genes have been identified.

Comorbidities: Accompanying Features

Tics are commonly associated with ADHD, as psychostimulant treatment of ADHD can “unmask” underlying tics. However, while ADHD is estimated to affect 30-60% of TS sufferers, less than 10% of those with ADHD have tic disorders. More commonly, individuals with TS experience other anxiety or mood disorders, with 10-50% having Obsessive-Compulsive Disorder, 30% having anxiety disorders, and 30% having mood disorders. Tics often become more prominent during periods of high anxiety or stress. This may explain why tics seem to disappear in some individuals while they are engaged in highly pleasurable activities like art or music, which often have a calming effect.

Treatment

Mild, nondisabling tics often do not require intervention, particularly if transient. Tics that impair psychosocial, physical, or other functioning require treatment. The first-line treatment is a form of cognitive-behavioral therapy called Habit Reversal Training. This involves teaching the patient to recognize early signs that precede a tic and to perform voluntary movements that are incompatible with the particular type of tic (known as a competing response). Unfortunately, this type of therapy, while quite effective, is often not covered by insurance and there are a limited number of trained therapists.

Pharmacologic treatments include alpha-adrenergic drugs like guanfacine or clonidine; antidopaminergic drugs like antipsychotics or tetrabenazine; and botulinum toxin injections for focal tics. However, these drugs all can have substantial adverse effects. In The Man Who Mistook His Wife for a Hat, neurologist and author Oliver Sacks described a man named Ray who found relief from his tics by taking the antipsychotic haloperidol, but the drug impaired his artistic genius so he would skip doses on weekends. Some recent studies have suggested that drugs that boost histamine may be beneficial in treating some forms of tic disorders.

Tics and Tourette Syndrome in Fiction

Accurate representations of tic disorders can be difficult to find in mainstream media and literature. Often, TS is portrayed as someone who barks obscenities uncontrollably, often for comedic effect, such as Amy Poehler’s character Ruth in the movie Deuce Bigalow: Male Gigolo. Although coprolalia is the most widely publicized symptom of TS, only 10% of TS sufferers exhibit coprolalia. Unfortunately, this misconception can lead to ostracization and discrimination, affecting the ability to develop friendships and get jobs.

Descriptions of tics can be found in fiction as early as Charles Dickens’s 1857 novel Little Dorrit, nearly thirty years before Tourette’s published paper. The character Mr. Pancks

“… snorted and sniffed and puffed and blew, like a little labouring steam-engine. Mr. Pancks here made a singular and startling noise, produced by a strong blowing effort in the region of the nose, unattended by any result but that acoustic one … Mr. Pancks, snorting and blowing in a more and more portentous manner as he became more interested, listened with great attention.”

Many such novels have included minor characters with tic disorders, but it wasn’t until the end of the twentieth century that we saw novels with protagonists who suffered from true tics. In 1998’s Skull Sessions by Daniel Hecht, the protagonist Paulie Skoglund is a man unable to hold a job due to the severity of his Tourette Syndrome, until his aunt hires him to repair her vandalized mansion and he uncovers a mystery involving his own past. As he is about to skydive with a friend, “Paul couldn’t repress a gesture, repeatedly raising one arm and snapping his fingers, like an impatient customer summoning a waiter.”

In 1999’s Motherless Brooklyn by Jonathan Lethem, the hero is private detective Lionel Essrog, who has Tourette Syndrome and narrates the story. Rather than seeing his condition as debilitating, Essrog treats it as a separate part of his brain that ”teaches you to see the reality-knitting mechanism people employ to tuck away the intolerable, the incongruous, the disruptive.”

Throughout the book, Essrog reflects on his diagnosis and even relates everything in his case to his Tourette’s.

I’m a carnival barker, an auctioneer, a downtown performance artist, a speaker in tongues, a senator drunk on filibuster. I’ve got Tourette’s. My mouth won’t quit, though mostly I whisper or subvocalize like I’m reading aloud, my Adam’s apple bobbing, jaw muscle beating like a miniature heart under my cheek, the noise suppressed, the words escaping silently, mere ghosts of themselves, husks empty of breath and tone.

-Lionel Essrog, Motherless Brooklyn

The 2011 Young Adult series Michael Vey by Richard Paul Evans features a teen boy with TS who has the power to project electricity from his hands. While the stories center on teens with powers and those who seek to take advantage of them, Michael’s condition plays a central role in the books. The representation is considered fairly accurate, as Evans himself has TS, providing opportunity to educate young readers on the condition.

For one, I have Tourette’s syndrome. You probably know less about Tourette’s syndrome than you do Idaho. Usually when you see someone on TV pretending to have Tourette’s syndrome, they’re shouting swear words or barking like a dog. Most of us with Tourette’s don’t do that. I mostly just blink my eyes a lot. If I’m really anxious, I’ll also clear my throat or make a gulping noise. Sometimes it hurts. Sometimes kids make fun of me. It’s no picnic having Tourette’s, but there are worse things that can happen to you—like having your dad die of a heart attack when you’re eight. Believe me, that’s much worse. I’m still not over that. Maybe I never will be.

• Michael Vey, The Prisoner of Cell 25, by Richard Paul Evans

Conclusion

Tourette Syndrome and other tic disorders are common but continue to be misunderstood by the general public. Coprophilia, or uncontrolled cursing, is an uncommon symptom. Most tics are not debilitating, but can be discomforting, and should be distinguished from mannerisms. Tourette Syndrome is a lifelong condition with only a few effective treatments available and can be associated with other psychiatric diagnoses. When writing characters with tic disorders, it is important to treat them with sensitivity and consider not only how the tics are seen by others, but how the character sees them.

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