The UpTic

Demystifying Georges Gilles de la Tourette: The Early History of Tourette Syndrome Part 2

• New Jersey Center for Tourette Syndrome and Associated Disorders • Season 2 • Episode 11

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We continue our fascinating deep dive into the winding history of Tourette Syndrome. Dr. Howard Kushner joins me again to discuss the early focus on coprolalia, psychoanalytic theories blaming patients, and the heroic efforts of advocates like the Shapiros to reframe TS as biological. We also touch on the importance of support groups, promising new interventions, and predictions for the future.

Dr. Kushner guides us through the shifting perspectives on TS, from the bleak early views encapsulated by the phrase "once a ticker, always a ticker," through the era of psychoanalytic blame, to our current understanding of TS as a multifaceted neurodevelopmental condition. Drawing from his vast research and his 1999 seminal work, "A Cursing Brain? The Histories of Tourette Syndrome," we examine the complex journey of TS diagnosis, the stigma attached to symptoms such as coprolalia, and the importance of a supportive community and multidisciplinary care for those affected.

Timeline Highlights:
[01:16] The emphasis on coprolalia in early TS research.
[02:51] Tic reduction when engrossed in an activity.
[05:04] The Tourette Syndrome Association's advocacy.
[07:12] The power of youth support groups for TS.
[09:22] Reframing TS as biological - Shapiro's contributions.
[11:42] Predictions for the next 50 years of TS research.
[13:30] The risk of over-medicalizing TS identities.
[14:23] Emerging interventions like TMS and medicinal marijuana.
[15:40] Appreciating Dr. Kushner's historical research.
[16:05] The link between left-handedness and TS.
[17:22] Advice for living well with TS.
[19:04] The importance of youth camps and support groups.

Links & Resources:
•A Cursing Brain: The Histories of Tourette Syndrome by Dr. Howard Kushner.
•New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/

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Dr. Howard Kushner:

There was a time in which especially in the 19, late 70s, and 80s, where people would identify im Tourette Syndrome, but that sometimes was make them into the disease. Their whole life was around the disease. And as you pointed out with examples of people who can do something else, and their tics go away, at least for that time period means there's a lot more they can do. So I think that's going to make a bigger difference.

Michael Leopold:

Welcome to the apptech, brought to you by The New Jersey Center for Tourette syndrome and associated disorders, empowering children and adults through education, advocacy and research by sharing the stories and experiences relevant to the TS community. Hello, and welcome to part two of our special deep dive on the history of Tourette Syndrome. Let's jump right in. One thing I was curious about was in the early days in the 1800s, the emphasis on coprolalia. And that being the big thing that it was bullied to evolve into that and echolalia. Is it fair to say that that early characterization of this condition is ultimately what kind of paved the way for the future of Tourette being labeled associated with this swearing condition, this kind of blurting out obscenities. Is it fair to say that started in the 1800s, but it

Dr. Howard Kushner:

got strongest in the 1940s? Under Margaret, Mahler, Mahler. We say, Well, do you have to have this clinical sign? So they didn't have echolalia? Or Kapali? She would argue that they're repressing it because of estimation. Wow. Okay, if the child in the examinating world at an end, she followed them didn't display copper Lolly or echolalia. She'd still say that sign up even deeper disorder. It's almost laughable if it weren't so sad. She was convinced that all these things were repressed sexuality towards her whole attitude towards sexuality has changed so much that so it was a disorder to be a masturbator. Wow, he hid masturbation that show that they were really masturbating.

Michael Leopold:

Well, I mean, I mentioned this underpinned a lot of how they explained a lot of conditions, not just this, like a lot of it came down to

Dr. Howard Kushner:

this theme this Yeah, especially psychoanalytic pediatrics, blaming the parents and early childhood conflict are all ascribed to a disorder rather than to a weakened ego. But at the same time, they would also admit there was an organic substrate,

Michael Leopold:

like it's organic, but also it's your fault, or it's your your bad habits. You're right,

Dr. Howard Kushner:

so if he can't find his behavior, and that's evidence, that underlying behavior for the tics and vocalizations, and that's even more evidence that it's there. Remember how they cut it, they would always blame the situation. And the patient's one of the kids at the end of the chapter I talk on Valerie says, I don't know what you're saying is this sex thing? I'm not thinking about sex, I just want to get rid of my tics. And he said, You're doing witchcraft. One

Michael Leopold:

of the things that stood out to me was how even in the early days like me, as infantil observed that there are patients with tics, the tics would often subside when they were engrossed in something they found interesting that the tics would dissipate. Can Can you talk about that, because that is so true. And we talk about that a lot today. It's part of how we coach people, it's find your passions, find hobbies, find things that you're, you're that really engrossed you because that is a coping mechanism. It's one of the closest things to ensure that we have it was enlightening to me to learn that was such an early discovery, or an early observation was that this did happen when they were really engrossed in something. Yeah, I

Dr. Howard Kushner:

think, you know, this ability to have a different focus and work as an actor, for instance, even learning rules from plays and things which would be difficult to sitting around. But it's very interesting why that takes place. And yet, it's sometimes when you have people who are able to defer TIG for a while, it's sometimes later it comes back, but they're no longer doing that. And I think that's a really good area of research for someone to look at why they wax and wane to begin with, but the best clinical approach would be what waxes and wanes, and again, it's infectious diseases and the anti Beck's diseases. So that's there. They weren't. And then 1920s Depending on where you look, you don't really have much sympathy or much discussion of his waning because they don't fall patient long enough. Patient Oh, who has an array of everything. They had the theory of explaining it before they even had the case itself. This case was used to justify their theory. What's interesting, I think, is whatever the dominant medical is particularly psychiatric theory at the time is that always becomes the causes for Tourette Syndrome. So the causes keep changing with the changing of save psychiatry. And now, we live in a world where we're in most infectious disorders, and where we look more at other kinds of organic disorders. So that I don't think we've reached the end of our explanations of Tourette Syndrome by any means, I guess. I would agree. Yeah. Yeah, it's a very interesting thing to study. I wish more people would do it better to you and

Michael Leopold:

me both. Sure. It really came to the public forefront in the late 20th century, beginning with the emergence of the Tourette Syndrome Association. You talk about this in your book in 1972, there was a group of New York City area parents, they had children with this condition, and they started a support group. That was the origin of the organization, now the largest in the world for Tourette support and research and advocacy. And it sounds like in the early days of the TSA, they were really intent on replacing these dominant psychoanalytic frameworks that tied the condition to bad parenting lack of discipline, early childhood sexual conflict. Is that a fair characterization?

Dr. Howard Kushner:

I think it's exactly right. I think the only thing I'd add, which doesn't detract from what you said is that parents would feel bad after a while when they had their kids on some meds, particularly alcohol. Because their children, there was a lot of rapid weight gain, the kids were unhappy there was that there's still the parental guilt. But certainly there was a real concerted effort by these people from New York City, and Shapiro's to get their story out. And they were very open to me. I mean, they invited me to stay with him, because they really wanted to come up with some explanation. But there were some very sad things that happened in two that I didn't write about, which is the problem of siblings of people with Tourette's Syndrome, or any other kind of pediatric psychiatric disorder, it's very difficult on the siblings as well. And sometimes the parents focus more on one than the other, I don't have any solution for that, except to find the cure for the disorder. So they deserve a lot of credit, be asked me what the most important thing to treatment would be, I would say support groups or kids with kids make to him to support his Tourette's talking to one another that really is helpful, and no, introducing myself, many of their patients, they would all tell me that the most useful thing that they had was the chance to talk to other people experienced. And so when they were younger, and it might have gotten worse and worse over time, the signs and symptoms are more prepared. And also pure help is really important.

Michael Leopold:

Oh, it's huge. I mean, now the Tourette Association as a Youth Ambassador Program rising like they have a number of I think there's a junior youth ambassador program as well. The organization this podcast is with NJ CTS has a youth advocate program kind of similar and that's that's the point of the we take young people with this condition, teach them to be advocates, but you're also getting them in front of other young people with it. And I went through these programs growing up and I found getting to meet other people with it was so liberating and did so much for my own confidence. Because with the numbers on it, I mean, yeah, we are learning, it's more common than we once thought. But still a lot of kids are growing up not meeting someone else with it. It can be very isolating. I

Dr. Howard Kushner:

think that's exactly right. If you ask yourself another question, How come there's so few Tourette's diagnoses earlier? And say, the first half of the 20th century and so many more in the second half of the 20th century? Is there actually something that what creates war? Is it ascertainment bias? In other words, we now have a label for this as spectrum disorder, from mild to very, very severe. Is that just it? Or is there something else? Is there an actual real increase? When I worked on other disorder, Kawasaki disease? That was the question I had to answer? Was there actually more Kawasaki disease? Or was there more ascertainment of it? And I think that's a good thing to always ask yourself, when you're looking at these sorts of things

Michael Leopold:

are ADHD too. I mean, that one with the diagnosis of ADHD really exploding in recent decades. I've heard out there as well come up that question.

Dr. Howard Kushner:

Yeah. Well, what happens when you add obsessive compulsive disorders, other kinds of focus disorders, with other Tourette's, you get a much larger number. Maybe people also are less interested in trying to hide the fact that their kids had Tourette's and much more open about it, which makes it easier for everyone. I mean, I had a patient who would say, whenever we got an airplane, there's a bomb on the plane, which is not a good thing to say that. But I think we've become much more accustomed to it. And we see a bigger spectrum of what constitutes Tourette syndrome and involuntary speech and other things.

Michael Leopold:

Can you talk a little bit about the contributions of the Shapiro's in reframing the this condition as organic?

Dr. Howard Kushner:

Yeah, I think there were quite heroes actually. He kept running into the fact that these patients he also read the literature and noticed that in Europe, there are a lot of people as they were tying Tourette syndrome, or the signs and symptoms of Tourette's to a wider population because they included obsessive compulsive behaviors and ADHD. And so if you add those in, and then all of a sudden you have more, and also people willing to talk about it, since it's much more well known and This Shapiro's, they were at Cornell hospital, they kept insisting this was organic. And essentially, he couldn't get his article published following these patients. So finally, the only place he could get that famous now, paper about Tourette syndrome can be treated without how though he couldn't get it published in United States, so had to be published in the British Journal of Psychiatry. So that's the other thing. The politics of medicine sub categories, has a lot to do with what goes on. People are very much attached to their theories.

Michael Leopold:

Yeah, yeah, that is human nature.

Dr. Howard Kushner:

I had met Shapiro, just as he was dying. I just got to town and I was supposed to interview him. And when I was at their house, he got the phone call that he had prostate cancer. Oh, but they were very nice to me. They still they wanted to get their story out. And he really gave the foundation that Tourette's foundation organization is really their first legitimacy. Later on. They didn't all get along so well. Mrs. Dr. Shapiro was very generous with her time and efforts.

Michael Leopold:

And it sounds like one of the best pieces of evidence that we had for Tourette being this organic biological ideology came from research by Ben Shapiro's, and others showing that medications like holdall could help people. I mean, I'll be at with some nasty side effects and not fit for everybody.

Dr. Howard Kushner:

Some people could tolerate it for much longer. Now, of course, the dose is much lower. And so the toleration is better. But it's very difficult for older people with Tourette's, as you know, and some have done remarkably well and others have had more problems. And the cultural context of which they experienced, I think makes a big difference.

Michael Leopold:

I'm going to ask a question that is kind of impossible to answer. Some of it. We've touched on already. If you were to predict the next 50 years of Tourette frameworks, research, how we characterize it, how we describe it, in 50 years, how do you think this situation will look?

Dr. Howard Kushner:

Well, I can only predict the past because,

Michael Leopold:

right? So I said it's an impossible question. Yeah. But I would

Dr. Howard Kushner:

say what's going to be taken much more seriously are post infectious disorders and multi faceted disorders, the drugs we have now, there's an intervention, therapeutic intervention, where you can go into the basal ganglia, and change the on off switches in the basal ganglia. Deep Brain. So DBS Yeah. And it works. I've seen incredible examples of where it works for kids who couldn't walk off the pavement without jumping down five times, or banging their head at this operation worked. It also works for Parkinsonian patients that the opposite direction is the same structure. But when you want to increase dopamine, the other you want to decrease it. So anything that will be able to make the bangli, again, that the brain will operate without having to do serious interventions, it's going to be a big difference. And so I think there'll be more neurobiology and more immunology, and beginning the collaboration between these different fields, which much more apps now, then I think that's going to open up much more and open lots of possibilities. So I think it'll be better. Also, our diagnostic tools are better, but sometimes not making a diagnosis can be as valuable as making a diagnosis.

Michael Leopold:

Can you elaborate on that? That's an interesting point.

Dr. Howard Kushner:

There was a time of which, especially in 1970s, late 70s, and 80s, where people would identify I am Tourette Syndrome, but that sometimes just make them into this disease. Their whole life was around the disease. And as you pointed out with examples of people who can do something else, and their tics go away, at least for that time period means there's a lot more they can do. So I think that's going to make a bigger difference. When we so much of our life is medicalized to begin with, I think there are ways that current interventions in neurobiology over time, DBS has also now used for obsessive compulsive disorders.

Michael Leopold:

I read about that. Yeah, there's been some cases only combined, actually,

Dr. Howard Kushner:

at that time at Emory. And there's a guy named Michael Wolken. If you run into him, in Florida, it was really good. He does what's called Gamma Knife interventions. He was also an average at that time. And

Michael Leopold:

I have also seen new research coming out with like TMS transcranial magnetic stimulation for ticks. I am not familiar with the efficacy of that right now that's being studied also the cannabinoid region of our brain. There's also a number of anecdotal reports of patients finding benefit with marijuana THC.

Dr. Howard Kushner:

We know it works because they were using it. I was

Michael Leopold:

gonna bring that up. Yeah. You mentioned that. And our

Dr. Howard Kushner:

patients are 60 patients that were following adult patients. They had heavy marijuana use. It seemed to work pretty well. Whereas alcohol and cigarette smoking does not work as well. But on the other hand, initially Sometimes cigarette smoking, although there's all kinds of downsides to it, I'm not advocating it, since I'm like he gets somebody through a period just difficult. And maybe we could figure out ways to use nicotine in a more efficient way that we are, like coping with, I could answer your question about the future. But one thing for sure is I won't be here 15 years from now, but write to me,

Michael Leopold:

Your contributions will be will still be felt. I mean, you put together an incredible book that just outlines the whole history from the 1800s to late 1900s. I do recommend it to our listeners who are looking to understand who were these initial doctors and the person our condition is named after what was his contribution? It's a really well, well written book. Thank

Dr. Howard Kushner:

you very much. Thank you also for asking me to talk about it, because it forced me to go back and look at it. And one of the things I found reading the book I've been interested lately in stuttering and a lot of Tourette's patients and people diagnosed were, in fact stutters from time to time. We looked at that very much in terms of handedness as well. There's a lot more to do that other people can do move from where I was to what we've learned in the last 25 years.

Michael Leopold:

Did you say that left handedness is found more commonly in tic and Tourette communities? Or did I just make that up?

Dr. Howard Kushner:

No, you heard it, but I didn't explain it. When I was working in the hospital at Brown, I noticed that our patients obsessive compulsive disorders, attention deficit and Tourette's seem to have been left handed at a higher than predicted rate. So I was convinced at that point, that there must be some relationship between handedness and movement disorders. So I kept that on my back shelf or something I would do. It turns out that it's much more complicated than that. It was just an idea. But it's certainly not unimportant to figure out. We don't really agree on our definition of stuttering either. That's changed. King's speech is a very good

Michael Leopold:

if you ever get that is a good yeah. Good movie. Yeah,

Dr. Howard Kushner:

I did see that. When you work in a clinic with patients all the time, you see things you never see otherwise. But at least I was when I realized that this was probably a ascertainment bias. But who knows there's there was something to it, but it's time for another interview. One

Michael Leopold:

last question is someone who's seen many patients with this condition? What advice do you have for people with that? I always like to end my interviews with a question like this, what would you tell a Tourette patient especially adults with it?

Dr. Howard Kushner:

Well, I don't know I'd have to have there each case is that it is, or so it's hard to say. But the one thing I would recommend was interaction with other people with Tourette's sometimes, especially for young kids. Each case really has a different some people do really well on medications, that some of the TPS operations we did are amazing. I when I say we, I didn't do any I was just part of the grouper. So I think that's the movement is going to be more sophisticated understanding of the interaction of genetics and genes and infectious disease, much more collaboration work will be done. And that's true every place. So it should be an exciting time to do work on this and maybe to find some other interventions but not hiding it and not feeling guilty. I'd be where I'd start. And I certainly would encourage youth support groups, which I see there's many of them now. That

Michael Leopold:

is something we've done great work with the TA NJ CTS, other Tourette organizations, there's summer camps. Now you can go to I volunteer every August for the Tim Howard Leadership Academy where we take high school students with ticks and we teach them how to make that transition into adulthood driving getting your first job with ticks. Do I disclose in a job interview? What should first responders know about ticks, if I'm in an accident, we train them on these things. And I've seen that be so empowering for these students that it's such a critical age to where you're 14 to 17 years old and starting to grapple with the emergence of adulthood. That is a time with lots of questions and challenges. And people need that support and support from others who get it other young people with tics, adults who've had it for many years, you know, getting it from people who have lived it. I

Dr. Howard Kushner:

think I think that's true. You don't want to romanticize disease. Some people do and you don't want to ignore it. You know, if you ask me in 1992, when you were born with the future would be I think it's been remarkable what's taken over and people of understanding, opening and willingness to find this more widely. So I think having these institutions like the summer camp and other spiritual things, having annual meetings, these are all very helpful. local chapters were a good thing at first, but they also sometimes would have a downside as

Michael Leopold:

well. Now with the internet, I mean, people are finding support groups on online and we can do so much more remotely to connecting people

Dr. Howard Kushner:

is we were able to do today. Exactly like this. I teach a seminar every week, people from all over the United States 15 of us, and we can meet because of the COVID we started using zoom and now we'd be all the time.

Michael Leopold:

Well, Dr. Howard has been wonderful chat. hang with you. This has been really enlightening. Thanks, Michael. Thank you for listening to the uptick, brought to you by The New Jersey Center for Tourette syndrome and associated disorders, empowering you to stretch the boundaries to live your best life. The NJ center for Tourette syndrome and Associated Disorders NJ CTS, its directors and employees assume no responsibility for the accuracy, completeness, objectivity, or usefulness of the information presented on this podcast. We do not endorse any recommendation or opinion made by any guest nor do we advocate any treatment

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