Speaking of Psychology: Understanding Tourette disorder and other tic disorders, with John Piacentini, PhD

Tourette disorder and other tic disorders affect millions of people yet remain widely misunderstood. John Piacentini, PhD, director of the UCLA Child OCD, Anxiety, and Tic Disorders Clinic, explains the brain basis of Tourette disorder; talks about why tics are very common in young children; debunks common myths—such as the idea that Tourette disorder mainly involves uncontrollable swearing—and discusses how recent behavioral therapies are helping many patients manage tics.

John Piacentini, PhD, is a board-certified clinical child and adolescent psychologist and professor in the UCLA department of psychiatry and biobehavioral sciences. He directs the UCLA Child OCD, Anxiety, and Tic Disorders Clinic and Tourette Association Center of Excellence which provide diagnostic evaluation and treatment (both therapy and medication) for youth. Piacentini's research focuses on the development and testing of effective treatments for youth OCD, anxiety, tics, and body-focused repetitive disorders.

Kim Mills: Tourette disorder and other tic disorders affect up to 1 in 50 school-aged children in the U.S., according to estimates from the Centers for Disease Control and Prevention. Yet the disorders are often widely misunderstood. Many people associate Tourette’s with uncontrollable swearing, but that symptom is actually relatively rare among the constellation of motor and vocal tics that make up Tourette’s. Meanwhile, for many years, medications were thought to be the only effective treatment for tic disorders. But in recent decades, researchers have developed effective behavioral treatments that are now a frontline option.

Today, we’re going to talk to a psychologist who’s been one of the leaders in developing those treatments. We’ll ask him: What is the state of science around Tourette’s and other tic disorders? What causes these disorders? How common are they? And at what age do they usually begin? What treatments are available and when are they necessary? And where can patients and families go to learn more?

Welcome to Speaking of Psychology, the flagship podcast of the American Psychological Association that examines the links between psychological science and everyday life. I’m Kim Mills. My guest today is Dr. John Piacentini, a professor in the UCLA department of psychiatry and biobehavioral sciences and a board certified clinical psychologist. He directs the UCLA Child OCD, Anxiety and Tic Disorders Clinic, which provides diagnostic and treatment services for those disorders. Dr. Piacentini’s research has focused on developing and testing effective treatments for youth OCD, anxiety, and tics. He’s published more than 300 scientific papers and chapters, as well as nine books. He also co-chairs the Scientific Advisory Board for the Tourette Association of America.

Dr. Piacentini, thank you for joining us.

John Piacentini, PhD: It’s my pleasure. Thank you for inviting me.

Mills: Could you start by giving us an overview of what Tourette’s and other tic disorders encompass and how is Tourette’s diagnosed? How does it differ from other tic disorders?

Piacentini: Well, Tourette's disorder and other tic disorders are characterized by obviously the presence of tics. And we think of two types or general categories of tics. The first is motor tics, and these would be like eye blinking, head shaking, maybe arm movements, leg kicking, even stomach tensing or abdominal tensing. So those are motor tics. And vocal tics is the other category, or phonic tics. And these are making noises like maybe whistling or grunting or throat clearing. And then there’s coprolalia, which I think you had referenced, which would be using vulgar or profane words, and those are less rare. Tourette syndrome or Tourette disorder basically means that you have motor tics and phonic or vocal tics. You make noises and you do movements.

The other types of diagnoses would be a motor tic disorder, and that is the motor tics without the vocal tics. And then vocal tic disorder, which would be vocalizations without the motor behaviors. Now, vocal tics in the absence of motor tics are extremely rare.

Mills: Now, I want to ask about the recent controversy at the British Academy Film Awards when Tourette’s advocate John Davidson shouted a racial slur during the ceremony. And we talked about this being called coprolalia. I understand it’s less common than people think. Why does coprolalia occur and how common is it in actuality?

Piacentini: In actuality, it’s about maybe 10% of people with Tourette’s disorder, maybe up to 15%. So it’s not that common. And the problem with coprolalia occurs because people would say, How can somebody do that? How could somebody say a word like that? Especially in the settings in which these types of behaviors or sounds are made. And it goes back to the way we think about tics and the way that tics work.

So if I can go into a little bit just about maybe the basic neurology of tics and then come back because I think it will make it more helpful to understand. So tics arise in the brain. They’re little bits of what we call chunks of behavior. So for example, if you reach for a coffee cup, you just reach for the cup. You don’t think about it. Your arm goes smoothly, you grab the handle, you bring it to your mouth, you drink the coffee, you put it back down. There’s no thought involved, but that action may involve hundreds, even more of very minute motor movements. You need to know where you are in space. Your hand needs to move. You need to pick it up without spilling any of the coffee. It’s all unconscious. And that’s because our brain anticipates what we want to do, our behavior. Our brain is really loaded and ready to go and it anticipates—so if I’m thinking maybe about coffee, my brain is already assembling all the little muscle movements, instructions for the muscle movements and sending them down through my brain through the basal ganglia to my muscles so I can grab the coffee. If I decide that I don’t want the coffee, all those little behaviors just evaporate. They go away. There’s a filter in our brain that only lets through the behaviors that are going to be useful to us.

Now in Tourette’s, the Tourette brain is overactive in terms of creating these little bits of behavior. It runs a little hotter. So all these behaviors are just waiting to go down and be released and turn on muscles. The problem is the filter that keeps our brains from engaging in all these behaviors is a little leaky in people with Tourette’s. So a lot of these behaviors get through. So if you see somebody with Tourette’s, you see tics are just things that we would do anyway. Moving my hands, smiling, shouting, making a noise, kicking my legs, tensing my stomach. These are just typical behaviors. They’re coming out at the wrong time. So we have an overactive brain and less inhibition or leakier filters to let the behaviors through.

So if you’re in a situation where all these behaviors are floating around in your brain and you’re starting to think, I don’t want to do these, it’s really embarrassing. And of course, your brain is going to focus on the stuff that’s most embarrassing or most hurtful or worse.

And that’s where coprolalia comes from. If I’m in a situation and I see something and I say, I can’t do the wrong thing, somebody with coprolalia, that behavior is going to trigger—don’t say this word. Don’t make that movement. That word and that movement, that little piece of behavior is going to be released and that leaky filter’s going to let it through. So we think about coprolalia as behaviors or sounds or noises that almost always occur at the worst possible place at the worst possible time, because the more I’m thinking not to do something in Tourette’s, it’s going to happen at least some time.

Mills: It’s like the old saw about don’t think about a blue elephant. And now of course everybody will think of a blue elephant.

Piacentini: That’s exactly right.

Mills: Well, what do we know about the causes of Tourette’s and other tic disorders? Are they genetic? Do they run in families?

Piacentini: Yeah. Tourette’s is genetic. There’s a genetic component to it. Tourette’s does run in families. So we see that quite a bit. It really is brain-based. There are some neurotransmitters that are involved in regulating some of these areas of the brain, like I was talking about the basal ganglia. And these are kind of the transmission of our brain that converts intention to action in other areas of the brain related to the ability to inhibit unwanted behaviors, to express behaviors and also to inhibit behaviors. And these areas, neurotransmitters tend to not work as well. So we used to think of the brain as really overactivity. It was too active. And that is still part of the reasoning, but it really also is that it’s also a lack of inhibition. As I said earlier, people with Tourette’s have a harder time stopping these behaviors. It’s like they’re more impulsive in certain ways.

Mills: When in development do tic disorders typically manifest? And if they show up in kids, do children sometimes just outgrow these things?

Piacentini: So we can see tics very young in life. The typical onset age though is around 4, 5, 6 or so, maybe 7. About up to 20% of young children in that age, kindergarten, first grade, exhibit tics. So they’ve done surveys in classrooms, and counted tics. So tics are quite normal and it’s kind of a growing pain kind of a thing as bodies and brains mature. But only in about 2% to 3% of these kids will the tics stay on, last longer than a few weeks or a few months. So we see them quite commonly. And there’s a diagnosis for children with tics that have had tics for less than one year, we call them provisional tics, provisional tic disorder, because there’s a likelihood that many of these kids will outgrow their tics over time. We don’t really know why 20% of first graders have tics and only 2% of fifth graders. It’s probably related to brain maturation of some kind.

Mills: Now, I know that Tourette’s often co-occurs with obsessive compulsive disorder and ADHD. Why are these overlaps so common? And are there even other mental health conditions that co-occur with Tourette’s?

Piacentini: We know that there are much higher rates of OCD, much higher rates of ADHD. We see high rates of anxiety in children with Tourette’s. And we also see pretty frequent tics in youth with autism and related disorders. And it’s not clear why—there’s probably some overlapping mechanisms in the brain that might lead to this overlap. Some of these are disorders of disinhibition. Certainly ADHD is characterized by impulsivity, difficulty in controlling some behaviors, similar to Tourette’s. We see with OCD, OCD is also characterized by unwanted behaviors. I have a bad thought or a feeling and I need to engage in a behavior. I may do things that potentially even could be harmful if not embarrassing. So there’s some overlap as well with OCD.

We also consider all of these disorders as disorders of negative reinforcement. So there are also environmental, non-biological aspects that we feel relate to these behaviors. And what a disorder of negative reinforcement is, well, first let’s talk about positive reinforcement. If I do something good and I get a reward, I’m going to do it again. That’s positive reinforcement. That’s—we get paid to go to work. We get good grades at our job, whatever that might be.

Negative reinforcement is if I make something bad go away, that’s also going to be reinforced because I don’t like feeling bad things. So with OCD, I have a lot of anxiety. I feel my hands are dirty. I feel I’m going to get sick. So I wash my hands and the threat disappears and that feels very good. That reinforces my hand washing. I’m making something bad go away. Same thing with tics. So tics are often triggered by something called a premonitory urge, a tightness, an uncomfortable feeling, an urge. Sometimes it’s even kind of just a sensory feeling that I need to make this movement. I’m really uncomfortable right now. And when I do the tic, that bad feeling goes away and that reinforces the tic. So in some ways, tics can actually be helpful by making these bad feelings go away. So all of these disorders kind of have similar relationships in that area.

Mills: During the COVID-19 pandemic a few years ago, you published a study that found a rise in tic disorders among young people that was tied to social media use. Can seeing tics on social media really cause people to develop tics?

Piacentini: Yes and no. We think of the psychiatric psychological diagnosis of Tourette’s syndrome, of persistent tic disorders, which the tics lasting longer than a year of either motor or vocal, or provisional tics, which are the tics that we’re not sure if they’re going to last longer than a year, but their tics occur in a lot of other places and people in a lot of other times. So people with, individuals with tics, if they see somebody else ticcing, that’s likely to start them ticcing. They can be contagious.

And we see people that are doing tics that don’t have a formal diagnosis of tic disorder. They may be non-biologically related tics. And that’s what we were seeing over COVID. And these tics have a number of names, but most commonly they’re called functional tics, functional neurologic disorder or functional tic-like behaviors. And that means that there’s no known etiology or known biological etiology for these tics. They’re just kind of happening out of the blue to some extent.

Mills: Well, let’s shift gears and talk about treatments. I know historically medications have been the main treatments for tic disorders, but in recent years, the behavioral treatments that you and others have developed have become very common options. So tell us about the history and where we are right now and what are these behavioral treatments?

Piacentini: Yeah. And I think the history of treatment is really fascinating for a number of reasons. So Tourette, Gilles de la Tourette, who was the person that published one of the first case series of these behaviors, and the disorder ended up being named after him, was in the early 1900s. He was a French neurologist, and he worked with another neurologist, Charcot, who was a contemporary of Sigmund Freud, student or contemporary. I can’t remember exactly.

So when these tics were first started being described and people started diagnosing them, they were considered symptoms of psychoanalytic trauma because that was the zeitgeist at the time, right? So psychoanalysis was the treatment of choice, and it didn’t work, because it was a neurologic disorder. And actually, I’m a behaviorist, I have respect for all treatments, including psychoanalysis, although I tend to be more evidence-based and psychoanalysis isn’t as evidence-based. But again, with the zeitgeist of the times, when the patients weren’t getting better, they were blamed for their lack of improvement because in psychoanalysis, the patient needs to work to undercover these hidden traumas that are triggering the tics. And there was no underlying hidden trauma. It was a biological disorder.

So there was a lot of backlash against therapy of any kind, psychiatry or psychology. And as soon as medications in the 1950s, by accident, some medications were found to help tics, the understanding of the disorder immediately swung from more of a psychological to a biological understanding. And it is a biological disorder, but as we will continue to talk when I get to the behavioral treatments, psychological factors are very important. So it was all medication all the time. And this went through about the 1960s, 1970s, when a couple of people started looking at behavioral treatments.

Now, there had been some treatments in the '50s that were a little wacky, behavioral, that didn’t really work. But a brilliant psychologist, and some of the listeners may know who this is, Nathan Azrin, who was a brilliant behaviorist. He and his colleagues, Nunn, Azrin and Nunn, published a paper looking at something called habit reversal training, where it’s basically, Don’t do your tic, was kind of the way that it worked. And it actually worked kind of well, but not as well as maybe people thought at the time—the research methodology wasn’t very strong, but medication still remained the same and kind of the old psychoanalytic beliefs that if you try not to do your tic, if you try to hold your tic in, your brain might blow up. I mean, it’s not a good thing to do.

So the more work was developing on this and in the late '90s, myself and some of my now colleagues at different places, including Harvard, started working on treatments and refining these behavioral treatments. And the primary treatment was, again, called habit reversal training. And this is what Azrin had developed, where you try to identify your tics, keep track of your tics, recognize the warning signs. Again, tics are triggered by, in many cases, by a premonitory urge or a sensation. I feel like I need to do my tic, I do my tic, the bad feeling goes away. So from behavioral principles, behavioral psychology, we know that if you have this urge and you don’t do the tic, the urge is going to get stronger. It’s going to be really uncomfortable. But at some point, your body will habituate and the urge will go away without doing your tic.

So the key was to teach patients how to recognize the urge, engage in a behavior incompatible with the tic so that they wouldn’t do the tic and wait it out. And lo and behold, it actually worked pretty well. And the way that the patients were able to not do their tic was to do an incompatible response. So do the opposite of the tic. So if I had a head shaking tic, the idea would be to kind of tense your neck muscles gently, just enough to hold your head in place and not do the tic. Or if I had an arm tic to hold your arm into your body so it wouldn’t move. For vocal tics, the competing response is breathing in an opposite pattern. So if I have a yelling tic, if I breathe in through my mouth and out through my nose in very controlled fashion, I can’t make any noises.

If I have a sniffing tic, I breathe in through my mouth and exhale through my nose so I can’t do the sniffing. And that worked pretty well, but it wasn’t getting a lot of traction. Psychopharm was still the big treatment. And psychopharm works quite well. We use a lot of psychopharm in our clinic. I’m not saying it’s not an effective treatment, but a lot of children, tics are most common in children and families were worried about using some of these medications which were pretty strong in children with tics. So the Tourette Association of America, which is the international leading organization to support Tourette’s research and families, commissioned a work group, the Behavioral Sciences Consortium. And I was asked to lead that group. And we had all the people that did behavioral treatments, including physicians, get together and try to come up with a new treatment that we could use.

And we knew that habit reversal training would be the most important part of this. And we added a family behavioral component as well. And the reason we added this is, I think I’d said earlier that the environment can reinforce tics. So if, and this is also some work done by Azrin and others, if children are ticcing and somebody yells at them to stop ticcing, that’s going to make them more anxious and probably tic more. And that’s negative reinforcement. If children are ticcing and mom—and God love moms—says, Oh, Billy, you’re ticcing. You don’t need to do your homework. Here’s some cookies. That’s going to be great for Billy, but that’s reinforcing tics, right? We all know about positive reinforcement, right? Pavlov and his dogs, et cetera. So we created another component designed to create a tic-neutral environment. The child should not be punished nor rewarded for tics in order to support reduction in the tics.

And we put those together and that was called the comprehensive behavioral intervention for tics or CBIT. Because it’s comprehensive because it has the direct habit reversal to directly affect children, teach them how to manage the tic and resist a tic. And the other piece would be, we call it the functional or the environmental piece by creating a neutral environment that doesn’t reinforce tics or create negative energies or anxiety that might also increase tics. And we were lucky to get funded and do two large studies and show that it worked.

Mills: What are the drugs you were alluding to that may help people with tic disorders?

Piacentini: The most common—well, originally these were neuroleptic medications. So the same kinds of medications that would be used for psychosis like Haldol. More recently now there’s some new classes of medications, so probably the most common medications. We still use some of the neuroleptic medications, but newer versions. And then there’s medications called alpha-2 antagonists, which are guanfacine and clonidine. And these are a little bit milder, but the medications still have a lot of side effects. So we use them when we need to. We use them in combination with CBIT, but if we can, we’re going to want to do a behavioral treatment, a non-medication treatment first, if at all possible.

Mills: Sure. Is treatment always necessary? I mean, how can patients and families know when they really need to learn CBIT, for example?

Piacentini: Yeah. The most common treatment throughout history for Tourette’s, especially in children, has been watch and wait or psychoeducation and support. And we would recommend that as well, because we know a lot of kids, very young kids, there is a chance that their tics might resolve on their own. And with medication, especially the medications did have side effects, it really was, let’s just see what happens. Let’s support the child. Let’s watch. And hopefully the child will grow out of the tics. So even in our clinic, if a child is very young or the tics are very mild, we probably would say, let’s watch and wait. We are always, always going to teach the families that environmental intervention. Ignore the tics. The child should gain nothing or lose anything because of the tics. The child should still go to school, should still have friends, should go to birthday parties, whatever it is, with the tics.

We don’t want the child to be treated any differently than a child without tics because that, again, will help build some resilience and then we’ll see what happens. Most kids do end up—If kids are having tics that are 7, 8 years old, and even if they’re going to be potentially temporary, we may try CBIT with them because it’s a pretty simple treatment and it’s not that hard to do. So if we can shorten the duration of the tics or potentially prevent worsening tics with the behavioral intervention, we can do that. But children that are a bit younger than that, the treatment may be more difficult there, we would watch and wait.

Mills: What got you interested in this line of research?

Piacentini: I actually was an OCD researcher and I moved to UCLA from Columbia University in 1995 to start an OCD program, a treatment program, again, using behavior therapy. And we started seeing a lot of kids with comorbid tics. So my boss said, You need to learn about tics. And he sent me to a support meeting, a parent’s support group for kids with Tourette’s. And I went to this meeting and they said, Oh, we’re so glad you’re here. We have all these questions. And I said, No, I don’t know anything about tics. I’m here to learn from you. And they all looked at me with this surprise and then they realized what a great opportunity. So that was my start.

Mills: And so I take it there are support groups around the country for people who are listening. If they’re interested in joining one, how do they find one?

Piacentini: Yeah. The Tourette Association of America, I think it’s Tourette.org or TAA.org is an amazing resource. They have lists of support groups. They have tons of material. I work quite closely with them and they can provide support. Or you go online or just look for Tourette’s support group in your area. CBIT is becoming much more common. And again, going back to the Tourette Association, they were our partners on this grant. It was the CBIT treatment studies were supported by the National Institute of Mental Health with the Tourette Association as a partner. And once we completed the study and showed that the treatment was very safe and effective, they created a program to disseminate these details. So they sent us all over the country to give talks and do workshops and support the dissemination of this treatment. So it’s actually pretty well available in a number of places now as a result of that.

Mills: Are there any other myths or misconceptions about Tourette syndrome that we haven’t covered?

Piacentini: That’s a good question. Individuals with Tourette’s are just like anybody else. They’re just as smart. They’re just as funny. They’re just as athletic. I think that’s been something of trying to kind of destigmatize or demystify Tourette’s. Going back to kind of before the behavioral treatments, when there were really no good treatments, there was medication, the idea was that these kids needed to be sheltered because we knew that stress increased tics. And these kids were patientized. They were treated almost as invalids and—just keep quiet, let’s not stress. You really shouldn’t go out. You shouldn’t do other things because you don’t have that capacity. Because people learn very early on that stress, anxiety, attention would worsen tics. Again, like I was saying before, if a child is in a situation where they’re afraid to tic, they’re likely going to tic. And what we learned through our treatment, the behavioral treatment is don’t hide, but seek out and believe in yourself and push yourself and go into these situations. We want you to lead a normal life. We want you to push and be out there and be active and have faith and confidence that you’re going to be able to do these treatments. And in fact, that was a big turning point. And I think the way we understood tics as a result of some of these behavioral work that we and many others have done is you need to get out in society and live your life and face the challenges and be accepted.

The other issue is that people don’t really understand Tourette’s in the community, and especially with coprolalia. People think that coprolalia is purposeful. During COVID when you’re in a situation and you’re around and you have a coughing tic, what’s going to happen? Don’t cough, don’t cough. And these kids were coughing like crazy and it was a tic. They weren’t sick and they were getting kicked out of school. We had a number of kids with coprolalia maybe shouting out sexual words again during a lot of the societal social changes that were going on and the number of individual trusts got arrested for shouting profanity or shouting sexually unwanted words, or even maybe reaching out and trying to touch somebody. The tic, there can be like a touching tic. And it was really, really, really a dark time. So society hopefully is coming around, but we still need to spread the word that these folks are like anyone else. It’s uncontrolled. They don’t want to do these things. They’re not shouting out profanity because they believe in it. They’re shouting it out because they’re trying not to, because they don’t believe in it.

Mills: So just to wrap up, what are you researching now? What are the big questions that still need to be answered?

Piacentini: Well, I work, one of my close colleagues at UCLA, Dr. Sandra Loo, is looking at EEG and we’re looking at some other trying to better understand the biology of Tourette’s and the underlying neurology. There’s some work going on with transcranial magnetic stimulation, not for kids yet, and don’t go rushing out because it hasn’t been really—it’s just only starting to be studied. So looking at different kinds of more sophisticated biological interventions.

But the real important thing is trying to identify, create awareness, greater awareness in the community. Because if everybody was able just to see somebody with Tourette’s and ignore their tics, I have no doubt that the level of ticcing would go down pretty dramatically because the reason people, the tics get worse is because the more you try not to tic, the more you’re saying, I can’t do this, the stronger and stronger it’s going to get and the louder and the bigger and the more intrusive the tic will be.

So it really is a matter of educating the community. And I think the BAFTA event is difficult—as it was for the presenters who were the targets as well as John Davidson. It was really, really an unfortunate situation all the way around. But something like that, if it is able to raise awareness significantly and lead to better lives for these folks, then that may be a good thing.

Mills: Well, Dr. Piacentini, I want to thank you for joining me today. I think this has been interesting and enlightening.

Piacentini: Great. Thank you very much.

Mills: You can find previous episodes of Speaking of Psychology  on our website at speakingofpsychology.org  or on Apple, Spotify, YouTube, or wherever you get your podcasts. And if you like what you've heard, please subscribe and leave a review. If you have comments or ideas for future episodes, you can email us at speakingofpsychology@apa.org Speaking of Psychology is produced by Lea Winerman.

Thank you for listening. For the American Psychological Association, I’m Kim Mills.