by Emma Byrne
Imagine that you were told that you’d get ten euros if you typed the sequence CFTNH quickly and correctly, but only one cent for FTHCN. Consciously or not, you’d expect that your performance on CFTNH would be better than FTHCN by the end of the experiment. And you’d be right: for most of us, dopamine is the neurotransmitter that kicks in to strengthen memory traces when the reward for an action is high. The performance of those volunteers who didn’t suffer from TS improved more on the ten-euro sequences than the one-cent sequences, with about a quarter-second speed advantage when it came to the high-reward key presses.
Among the volunteers with TS, the results fell into two distinct categories. For those TS patients who were being treated with antipsychotics, there was very little difference between the five “expensive” sequences and the five “cheap” ones. They improved at both with practice (though could still barely manage to shave off one-twentieth of a second from either), but they didn’t make any extra effort, consciously or unconsciously, to get the high-reward sequences right. However, for the TS patients who weren’t taking medication, the difference between the high- and low-reward conditions was massively exaggerated. While the presence of a higher reward inspired the volunteers without TS to make a quarter-second reduction, the unmedicated TS patients shaved a whole second off their performance times in the high-reward condition.
Exactly how they did so is not entirely clear, but it’s reasonable to suppose that the higher levels of dopamine in the unmedicated TS sufferers’ brains meant that they experienced a much more significant neurological reward than the other two groups. This could explain why tics proliferate and become stronger over time: performing the tic satisfies the urge and causes a release of dopamine. The exaggerated rewarding effect of dopamine would make TS patients overlearn the movements that make up the tic. It might be the case that performing a tic, acting on an urge, triggers the release of dopamine in a TS sufferer’s brain—to such a degree that suppressing that urge might be exactly as painful, and for the same reasons, as refusing a line of coke would be to an addict.
For those of us without TS, the neurological rewards we experience from the release of dopamine are strong enough to motivate us to do difficult things that are likely to be of some benefit, but the rewards aren’t so strong that we can’t suppress our urges where necessary. For those people with TS, that exaggerated dopamine hit that makes it possible to crush the opposition on a simple key-pressing task might be the driving force behind the ticcish behaviors that are so hard to subdue. Before we know for sure, we need to understand much more about the brain, but in the meantime such research does offer a better picture of how TS sufferers’ brains are special, as well as how antipsychotics might work.
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We’ve known since the 1950s that treatment with antipsychotic drugs can alleviate the symptoms of TS, so why aren’t all TS sufferers simply offered antipsychotic medication? After all, it was the effectiveness of treatment with antipsychotic drugs in the 1950s and ’60s that first made it clear that TS is biological rather than psychological.17
The mistaken belief that TS was psychological led to some interesting and misguided “cures” over the years. In 1957 the British Medical Journal reported on the (in hindsight) extraordinary treatment given by Dr. Richard Michael of the Maudsley Hospital in London to a man in his late twenties after using cutting-edge psychoanalytical approaches. Dr. Michael looked at the man’s home life (strong mother, weak but caring father) and sexuality (the “active participant” in same-sex relationships during his army service) and decided that the patient’s need to repress his sexuality in civilian life was probably the issue.
The treatment administered by Dr. Michael was “carbon dioxide therapy,” in which the unfortunate patient was made to breathe air that was 70 percent CO2. Just to put that in perspective, that’s nearly twenty times the concentration of carbon dioxide we exhale during normal breathing. After thirty sessions of being gassed—during which Dr. Michael says he observed “violent sucking movements” and dreams that were “full of obviously phallic imagery”—the patient reported that he was pretty much fully cured, thank you kindly! Whether this was due to the efficacy of the treatment or simply the desire not to be gassed is open to question.18
What we now know, after more than a half-century of pharmacological treatment and hundreds of studies, makes this approach seem baffling, bordering on the inhumane. That said, antipsychotics, while helpful, can sometimes be equally unpalatable.
Antipsychotic drugs do help to reduce tic severity for some patients, but they aren’t suitable for all. Many patients are overwhelmed by the side effects, which can include headaches, dizziness, sedation, depression, weight gain, and, in some cases, symptoms similar to Parkinson’s disease. Even for those able to tolerate them, these drugs aren’t a permanent solution: discontinue taking them and the tics resurface.
It’s no wonder that many patients are still searching the fringes of medicine for treatments that, while much less likely to provide benefit, don’t lead to tremors, pain, and misery. According to Professor Diana Van Lancker of New York University, Botox shows some promise as a way of reducing vocal and muscular tics.19 It seems to reduce the strength of the premonitory urges that many TS sufferers experience and each injection is effective for around three to six months. Professor Van Lancker suggests that the Botox reduces the amount of muscle tension in the vocal cords, thus reducing the compulsion to form a swear word, but there’s still not enough research to show whether this is a viable treatment, or just so much more CO2 therapy.
A number of dentists have also started offering an implant that works on a similar theory: that muscular tension in the jaw is responsible for the tics in TS. There haven’t been any clinical trials yet but Dr. Andrew Clempson and his colleagues from the charity Tourette’s Action contacted their members to see whether they could find people who had experienced any relief after a dental implant. They found only nine people who had tried it, but each of these had paid between £3,600 and £10,000 for the process. Three of the patients experienced some relief, two had no relief and the other four said they were experiencing ongoing complications. According to Dr. Clempson, patients should save their money, at least for now. “There is no sound theoretical basis for dental [treatment] for TS. Our small survey suggests the treatment is less successful than sometimes claimed,” he said. But watch this space, as the Tourette Syndrome Association is planning a thorough clinical trial soon.20
If a £10,000 implant in your jaw doesn’t sound appealing, what about a £30,000 implant in your brain? Deep brain stimulation (DBS) is a relatively new technique in which electrodes are implanted in structures deep inside the brain. Since the early 2000s, DBS has been used to treat Parkinson’s disease, OCD, depression, and chronic pain, and in more recent years has been tried in a number of patients with TS.
Because the surgery is so expensive and so complicated, the number of patients treated to date is small, but most trials show that there is some beneficial effect to stimulating the thalamus, a structure found deep in the brain of almost all animals, that coordinates sensing, movement, consciousness, and sleep. While intermittent stimulation given to both sides of the thalamus seems to lead to a reduction of tic severity of around 70 percent, the procedure is not without its drawbacks. Patients are at risk of stroke, infection, strange sensations elsewhere in the body, lethargy, and problems with their vision.21
One Dutch study was halted halfway through recruitment because all of the patients taking part reported debilitating side effects.22 In another study, one patient died after her symptoms worsened, leaving her unable to swallow. At the age of twenty she had DBS electrodes implanted, but as soon as stimulation was switched on her tics increased and she became gripped with serious anxiety and the overwhelming urge to stab and scratch herself. She asked for the stimulation to be switched off but, even after the current stopped flowing, she still suffered complications and could no longer bear to swallow food or dri
nk. She became so depressed and withdrawn that, at the age of twenty-three, she died in a nursing home from severe dehydration after refusing to be treated with intravenous fluids.23
These experimental approaches raise some serious questions: most newly diagnosed TS patients are children and adolescents, and many suffer from the compulsion to self-harm. Is it ethical to submit these patients to an experimental procedure that can cause such serious complications? According to Dr. Roger Kurlan, medical director of the Movement Disorders Program at Atlantic Neuroscience Institute in New Jersey, surgeons should take the utmost care when choosing whether to treat a patient, no matter how severe their tics, since it’s impossible to predict the severity of the complications they might suffer as a result.24
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So far, then, no treatment option seems particularly desirable. Drugs have debilitating side effects, Botox and dental implants are poorly tested, and deep brain stimulation is still in its shaky infancy. Dr. Sabine Wilhelm of Massachusetts General Hospital and Harvard Medical School thinks that it’s time to start looking again at behavioral treatments for TS. Because of the mistakes of the early twentieth century, when questionable psychological treatments failed so spectacularly at helping TS sufferers, it’s no surprise that it’s taken fifty years to revisit the idea of therapy as a serious option. But in the early 2000s, as we started to understand the extent to which our behavior can shape our brains as well as the other way round, several researchers have chosen to reexamine the idea of behavioral interventions as an alternative to medication.
Until they took on this project, it was common wisdom among doctors that the tics in TS simply couldn’t be controlled, that trying to suppress a tic would just cause new ones to rise up and take their place and that behavioral therapies would only worsen the symptoms. But a new approach known as comprehensive behavioral intervention for tics (CBIT) is proving to be surprisingly effective.
According to Dr. Wilhelm, the success of CBIT means that it’s time to ditch resistance to behavioral approaches. Researchers and medical specialists alike have been concerned that tics might get worse if such approaches are relied upon, that patients might be unduly burdened by the effort required to undergo such treatment, or that it represents a return to the “dark ages” of regarding TS as a psychological rather than neurological disorder.
None of these concerns is valid, says Dr. Wilhelm.25 Many patients are eager to try a ten-week program of therapy that might permanently improve their quality of life, especially when antipsychotics are the only well-tested alternative. Furthermore, our behavior can shape our neurology, given enough reinforcement and support; behavioral approaches could very well change the way that TS sufferers experience their urges and their tics on a physiological as well as a psychological level. Whereas the therapy for teenagers that Dr. Wadman studied was aimed at helping patients to accept and live with their tics, Dr. Wilhelm strongly believes that there are therapies that can change the urges and the tics themselves.
TS is undoubtedly a biological phenomenon, caused by our genetic makeup and the structures of our brains. But, according to Dr. Alan Peterson of the University of Texas, our current understanding of behavioral therapies combines the effects of genes, brain structures, and biology with the environment and the situations that TS sufferers find themselves in. Behavioral therapies like CBIT can help TS sufferers understand their environmental triggers and, in response to their urges, to build repertoires of behavior that they find less stressful.26 “Behavior therapy for tics is not a cure, but a management strategy that can help people live a better life,” he says.
In CBIT, patients are helped to identify the types of situation that make tics and urges more severe, and to be able to notice the premonitory urge early on. The patient is encouraged to rate the repertoire of their tics from the most distressing to the least distressing and treat them in that order. For each tic, they try to learn another behavior that will both be incompatible with carrying out the tic, and won’t be socially or physically damaging. For example, they might try deep and steady breathing to counter the urge to swear. This habit-reversal training can break the link between the urge and the tic over a surprisingly short period: a few weeks or even days.
CBIT also includes relaxation training, as well as training for parents, teachers, and other important people in the patient’s life, in order that they can support the behavioral changes. Parents are encouraged to notice and praise their children when they successfully divert an urge to tic, and to help them avoid situations known to make their urges worse.
The CBIT approach is promisingly effective. In a study of 126 nine- to seventeen-year-olds, the patients who took part in eight sessions of CBIT over ten weeks found that tic severity as measured by the Yale Global Tic Severity Scale reduced by almost a third, a result twice as good as that achieved by patients in the control group who simply met with someone to discuss TS for the same period of time.27 What’s more, two-thirds of the children who responded well to CBIT were still feeling the benefit six months later, and adults also showed similar improvements in a study of 122 people taking part in the same sort of therapy.28
Tic reduction of around 30 percent isn’t as impressive as the effect of antipsychotic drugs, which can reduce them by 60 to 80 percent in most individuals. But drug side effects leave many TS sufferers trapped between the crushing emotional and social burdens of TS and the debilitating nature of the medication. Therapies like CBIT offer a middle ground: the hope of at least some relief without that risk.
So far all the research has focused on ways of reducing the frequency of tics, but there’s another way to ameliorate the long-term social and emotional impact of TS. The current lack of public awareness of the condition leads to bullying, isolation, depression, and anxiety, so there’s one very simple thing that would make sufferers’ lives much more bearable: for the rest of us to learn to be a bit more understanding.
For TS sufferers with coprolalia, their compulsions to swear are not like the occasional verbal pyrotechnics that the rest of us sometimes come out with. They are constantly having to control urges that, if acted upon, would release a dopamine hit that most of us have never experienced. Despite this dopamine rush, and for reasons we still don’t understand, TS sufferers’ tics sometimes seem to be as inappropriate and harmful to themselves as possible. While I get a good dose of painkilling relief from non-propositional swearing, or can make a joke or a point with propositional swearing, the unpropositional swearing in TS makes life uncommonly difficult for the sufferer.
Medication and behavioral therapies can mitigate those urges, but TS patients either have to accept serious side effects, or work very hard at developing partial control of their tics. I just can’t think of any other disease where the rest of us expect the victims to increase their discomfort just to make everyone else feel better.
That’s what we are asking these TS sufferers to do—and remember TS is much more common in children and adolescents than it is in adults. Essentially, we are offering these children and their parents a lousy choice: control your tics with difficult and sometimes dangerous methods, or risk bullying, abuse, and exclusion.
So, as you can see, if you’re a Tourette’s sufferer, swearing really isn’t all that good for you, even though it feels great, and that’s why this chapter shouldn’t be in this book. Tourette’s isn’t the punchline to a bad joke about swearing. It’s a miserable and poorly understood disorder with serious consequences. Dr. Heather Smith of the University of Manchester interviewed several young people about their experiences with TS.29 One of the teenagers that she spoke to said “I wasn’t a person anymore, I was basically just a machine that hit things and shouted.” That’s a frightening and lonely thing for any child to believe about herself.
What if we all learned more about the condition? What if we decided to accept the fact that these tics are more distressing to the TS sufferer than they are to the rest of us? While that wouldn’t be enough to make those overwh
elming urges go away, it might at least reduce the number of young TS sufferers who go on to live a life of social withdrawal and depression. I think it’s time we tried.
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* Unvoluntary movements, as distinct from involuntary ones, serve no intrinsically useful purpose. A blink is involuntary; compulsively making the wanker gesture in one’s workplace is (usually) unvoluntary.
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Disciplinary Offense:
Swearing in the Workplace
One of the most widely reported revelations about the 2008 banking crisis had nothing to do with malpractice or negligence. Instead, breathless column inches and earnest talking heads discussed the discovery that a Goldman Sachs senior manager sent an email that described a subprime mortgage arrangement as “one shitty deal.” When the news broke, rather than apologizing to the public for the years that they sold shitty products, Goldman Sachs instead announced that they had instigated a rigorous email filter and a “no swearing” policy: doesn’t that make you feel better?
Swearing in the workplace divides opinion. TV chef Gordon Ramsay has made it part of his public persona, while Paul Dacre, editor of the Daily Mail, uses one particular swear word so much that his briefings are known among staff as the “Vagina Monologues.” In other organizations, in the United States especially, a new puritanism has taken hold. More afraid of offending their customers with bad language than bad products, many companies are cutting out the cursing. But research from around the world, and particularly Australia and New Zealand, shows that—in some cases at least—the team that swears together stays together.
The Academic Study of Banter
Swearing and insults—even ones that can sound quite vicious to the uninitiated—are all part of the banter in many workplaces. It’s good for group bonding, and inclusivity makes for a productive workforce. As Dr. Barbara Plester wrote in her 2007 paper, “Taking the Piss: Functions of Banter in the IT Industry”: “Banter occurs when people are in good humor; when people are playful, they are at their most creative.”1
