Challenging perspectives on Gilles de la Tourette Syndrome – evidence for a disorder of purposeful actions

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The abstract of the original paper by Petruo et al, titled Altered perception-action binding modulates inhibitory control in Gilles de la Tourette syndrome, can be accessed online. 

Gilles de la Tourette Syndrome (GTS) is a multi-faceted neuropsychiatric developmental disorder with onset in childhood or adolescence. It is characterised by multiple motor and vocal tics that can cause considerable problems including social stigmatisation, low self-esteem and secondary comorbidity, particularly depression.

Because these tics are perceived as a motor problem, GTS is typically considered a movement disorder. However, this view is beginning to change. In fact, there are many aspects of GTS, which do not fit to the concept of a straightforward movement disorder (Beste & Münchau, 2018) these aspects include that (i) tics are associated with premonitory sensations, (ii) tics can be controlled and (iii) tics may be related to motor learning and habit formation. It seems that the symptoms of GTS do not or only incompletely fit to the characteristics of “classical” movement disorders. When taking a broader perspective, it seems more likely that tics represent an excess of purposeful actions and some kind of over-learned behaviour in the sense that the coupling between “perception” and “action” is altered in GTS.

It has been suggested that GTS is associated with stronger connections between perception and actions and that the underlying deficit in GTS is the inability to weaken strong connections between perceptions and actions. In a recent study by Petruo et al. (2018), this novel perspective on GTS was examined for the first time; i.e. it was tested whether there are indeed stronger connections/bindings between perception and action in these patients.

To test this, the authors examined a group of children with GTS and healthy control children in a task where it is important to occasionally suppress responses. In other words, situation-appropriate behaviour was examined, which is a task relevant in daily life and sometimes difficult to accomplish by patients. In their experiment, the authors took advantage of the fact that especially multi-modal stimuli (i.e. stimuli that combine auditory and visual aspects) are very useful to guide actions. Critically, the authors also included conditions (situations) where the actions needed to be inhibited, but where the perceptual input was altered (i.e. the auditory aspect was lacking). This is critical for GTS patients, because these patients likely establish strong expectations that a particular action is preceded by the same input.

If this expectation is violated, this will cause problems to guide actions. The authors showed that this is indeed the case in GTS patients. Moreover, they also showed what neural mechanisms underlie these processes. Their analyses revealed that altered action selection processes are indeed associated with the observed behavioural deficits. Attentional selection processes do not seem to be important for the observed problems in GTS. Taken together, the results provide first direct evidence for a new conceptual framework for GTS; i.e. that GTS might be conceived as a disorder of purposeful actions and alterations of the connection between perception and action. Notably, this finding has strong implications for the treatment of GTS. Aside pharmacological treatments, also behavioural therapy (e.g. habit reversal training) is an important treatment approach that has been shown to ameliorate tics in GTS. The aim of this behavioural intervention is to replace tics with other movements that do not appear to be misplaced in context.

The new concept that GTS might be a disorder of purposeful actions corroborates the usefulness of this approach and provides the missing theoretical background to this form of treatment. Importantly, the new framework and ways to test this framework in GTS will provide new diagnostic procedures. In addition, research in this domain will provide novel tools to examine different cognitive facets of GTS. Consequently, these new tools may prove useful in the diagnostic process of GTS and may also serve as new outcome parameters and endpoints for clinical studies in GTS. Currently, a study is underway that examines the effects of a habit reversal training using the above-mentioned experiment. This is important because this study will test whether a major treatment approach is able to modify problems that are central for a new theoretical framework for GTS.

1 Cognitive Neurophysiology, Department of Child and Adolescent Psychiatry, Faculty of Medicine of the TU Dresden, Germany

2 Department of Pediatric and Adult Movement Disorders and Neuropsychiatry, Institute of Neurogenetics, Center for Brain, Behavior and Metabolism, University of Lübeck, Lübeck, Germany

References

Beste, C., & Münchau, A. (2018). Tics and Tourette syndrome – surplus of actions rather than disorder? Movement Disorders: Official Journal of the Movement Disorder Society, 33(2), 238–242. https://doi.org/10.1002/mds.27244

Petruo, V., Bodmer, B., Brandt, V. C., Baumung, L., Roessner, V., Münchau, A., & Beste, C. (2018). Altered perception-action binding modulates inhibitory control in Gilles de la Tourette syndrome. Journal of Child Psychology and Psychiatry. https://doi.org/10.1111/jcpp.12938

Authors

Professor Christian Beste
Professor Christian Beste
Dr Alexander Münchau
Dr Alexander Münchau

Discussion

Avatar

WTF is wrong with you morons? GTS is a real syndrome and has ruined my entire life. How bloody dare you make a mockery of this. You call yourself a “doctor”? Maybe in voodoo. And your buddy the professor is equally uninformed. Seriously, how dare you post this crap. Both of you make me sick. I’m 59 years old and have lived with GTS all my life. I’m certain I know more about it than either of you “geniuses”!

Matt Kempen

Thank you for your engagement with the post published on our website, it is a summary of the paper – Petruo, V., Bodmer, B., Brandt, V. C., Baumung, L., Roessner, V., Münchau, A., & Beste, C. (2018). Altered perception-action binding modulates inhibitory control in Gilles de la Tourette syndrome. Journal of Child Psychology and Psychiatry https://doi.org/10.1111/jcpp.12938 published in the Journal of Child and Adolescent Psychology and Psychiatry.

We note that the original post on our website did not reference that it was a summary of the paper and apologise for this, we have now updated this. The original paper has gone through rigorous peer review.

The Association for Child and Adolescent Mental Health (ACAMH) is a membership organisation, and registered charity, with over 60 years’ experience in promoting the advancement of child and adolescent mental health through evidence based research. Our membership comprises a diverse group of clinicians, practitioners and world-leading child mental health researchers, working across an array of child and adolescent mental health domains. We aim to raise standards in the understanding and management of child mental health issues, bridging the gap between rigorous research and best practice.

Amongst our aims is the dissemination of evidence based information in relation to child and adolescent mental health, one way in which we do this is through posts on our website. We have a number of free resources that are accessible including Topic Guides and podcasts. You might be interested these in relation to Tourette Syndrome Thank you for your time.

The authors of the summary (and also the original paper) have provided a response to the comments from readers.

“We understand the reactions of the readers of our article and appreciate their clarity and openness.

One of the key points relates to the term “purpose” / “on purpose”. Running a Tourette clinic for both children and adults with Tourette syndrome for many years and after having spoken to and personally assessed many hundreds of patients there is no doubt that patients with tics / Tourette syndrome are not “making tics up”, or “choose” to have tics. It is absolutely clear that tics occur as extra movements and do not represent a “free choice” phenomenon.

What makes tics particularly problematic is that they resemble movements spontaneously occurring in anybody including for instance eye blinking, sniffing or throat clearing, or raising eyebrows, i.e. that they can so easily be misinterpreted as a voluntary movement. This sets them apart from other extra movements, for instance myoclonus or chorea, which are not part of the physiological movement repertoire.

The resemblance of tics and spontaneously occurring physiological movements that may not be noticed by the actor and also the fact that tics can be stopped, at least for some time, i.e. postponed, can lead to misinterpretation and problems not only on the side of the observer but also for the affected person with tics. When tics are noticed by the one who tics and by other people observing / hearing them, and the affected person experiences that tics can be stopped or postponed then this causes a great dilemma for the brain. Then, these movements have to be distinguished from other “useful”, i.e. goal directed or intentional movements. For instance, a raising eyebrow tic needs to be distinguished from a raising eyebrow movement as a sign of surprise. That such a process of distinction and the process of avoiding / stopping a tic can be very demanding, irritating, frustrating and time-consuming is very obvious.

Our view based on previous experiments that tics resemble spontaneous movements and have a lot in common with purposeful movements (but are not identical!) was intended to highlight the particular problems for the brain arising from such a resemblance. Because of such a resemblance – and misinterpretation by the observer – tics are so prone to stigmatisation and can be so detrimental for self-esteem. Because of a great similarity in the process of generation of spontaneous / intentional movements and tics in the brain, one possibility to strengthen the control of tics is to help patients becoming more aware of tic related processes in order to stop or “divert” them.

Another possibility might be not to focus on tics at all but to direct attention to other movements or processes, e.g. through mindfulness based treatments or attention training.

Which of these options works better for a given patient is often not clear. To tailor behavioral treatment to personal needs and preferences should be further developed in individualised treatment approaches.

Another point relates to premonitory sensations. We absolutely agree that these are often not present, particularly in younger children, who are not aware of their tics. The point we want to make is that the view of tics as pure motor phenomena falls short of their nature. Movements, including tics are driven by previous perceptual experiences and have perceptual consequences, may these be conscious or subconscious.

The binding of perceptual experience with movements may be different in people with tics. If such binding is stronger, then certain perceptions, for instance even a cloth tag in a T-shirt may be readily bound to a certain movement, example – a brief head extension, which then might become a tic – through tighter perception-action binding. The conceptualisation of tics as events comprising perception and action potentially opens up new treatment options.”

Professor Christian Beste and Dr Alexander Münchau

Avatar

So your basis is to get people with TS to basically suppress their tics? Thats what your so called study is encouraging. Your are taking the diagnosis and treatment of TS back to the dark ages and are trying to effectively say we are making all this up. Do you know what your “behaviour treatment” of a child with TS leads too? It leads to a whole heap of more comorbids and mental health problems later in life. Which brings me to another point. Your are concentrating on children. What about adults with TS, what about adult onset of TS when there are no previous symptoms? Did these adults just wake up one morning with these learned behaviours. Please try to work with and actually communicate with people who have a full real world experience of living with this neurogical (not neuropsychiatric) condition and we will tell you what the condition is and what it isn’t. We adult touretters have brains and mouths and trust me we can speak for ourselves and educate those of you that are going to make more problems than you will ever solve.

Matt Kempen

Thank you for your engagement with the post published on our website, it is a summary of the paper – Petruo, V., Bodmer, B., Brandt, V. C., Baumung, L., Roessner, V., Münchau, A., & Beste, C. (2018). Altered perception-action binding modulates inhibitory control in Gilles de la Tourette syndrome. Journal of Child Psychology and Psychiatry https://doi.org/10.1111/jcpp.12938 published in the Journal of Child and Adolescent Psychology and Psychiatry.

We note that the original post on our website did not reference that it was a summary of the paper and apologise for this, we have now updated this. The original paper has gone through rigorous peer review.

The Association for Child and Adolescent Mental Health (ACAMH) is a membership organisation, and registered charity, with over 60 years’ experience in promoting the advancement of child and adolescent mental health through evidence based research. Our membership comprises a diverse group of clinicians, practitioners and world-leading child mental health researchers, working across an array of child and adolescent mental health domains. We aim to raise standards in the understanding and management of child mental health issues, bridging the gap between rigorous research and best practice.

Amongst our aims is the dissemination of evidence based information in relation to child and adolescent mental health, one way in which we do this is through posts on our website. We have a number of free resources that are accessible including Topic Guides and podcasts. You might be interested these in relation to Tourette Syndrome Thank you for your time.

The authors of the summary (and also the original paper) have provided a response to the comments from readers.

“We understand the reactions of the readers of our article and appreciate their clarity and openness.

One of the key points relates to the term “purpose” / “on purpose”. Running a Tourette clinic for both children and adults with Tourette syndrome for many years and after having spoken to and personally assessed many hundreds of patients there is no doubt that patients with tics / Tourette syndrome are not “making tics up”, or “choose” to have tics. It is absolutely clear that tics occur as extra movements and do not represent a “free choice” phenomenon.

What makes tics particularly problematic is that they resemble movements spontaneously occurring in anybody including for instance eye blinking, sniffing or throat clearing, or raising eyebrows, i.e. that they can so easily be misinterpreted as a voluntary movement. This sets them apart from other extra movements, for instance myoclonus or chorea, which are not part of the physiological movement repertoire.

The resemblance of tics and spontaneously occurring physiological movements that may not be noticed by the actor and also the fact that tics can be stopped, at least for some time, i.e. postponed, can lead to misinterpretation and problems not only on the side of the observer but also for the affected person with tics. When tics are noticed by the one who tics and by other people observing / hearing them, and the affected person experiences that tics can be stopped or postponed then this causes a great dilemma for the brain. Then, these movements have to be distinguished from other “useful”, i.e. goal directed or intentional movements. For instance, a raising eyebrow tic needs to be distinguished from a raising eyebrow movement as a sign of surprise. That such a process of distinction and the process of avoiding / stopping a tic can be very demanding, irritating, frustrating and time-consuming is very obvious.

Our view based on previous experiments that tics resemble spontaneous movements and have a lot in common with purposeful movements (but are not identical!) was intended to highlight the particular problems for the brain arising from such a resemblance. Because of such a resemblance – and misinterpretation by the observer – tics are so prone to stigmatisation and can be so detrimental for self-esteem. Because of a great similarity in the process of generation of spontaneous / intentional movements and tics in the brain, one possibility to strengthen the control of tics is to help patients becoming more aware of tic related processes in order to stop or “divert” them.

Another possibility might be not to focus on tics at all but to direct attention to other movements or processes, e.g. through mindfulness based treatments or attention training.

Which of these options works better for a given patient is often not clear. To tailor behavioral treatment to personal needs and preferences should be further developed in individualised treatment approaches.

Another point relates to premonitory sensations. We absolutely agree that these are often not present, particularly in younger children, who are not aware of their tics. The point we want to make is that the view of tics as pure motor phenomena falls short of their nature. Movements, including tics are driven by previous perceptual experiences and have perceptual consequences, may these be conscious or subconscious.

The binding of perceptual experience with movements may be different in people with tics. If such binding is stronger, then certain perceptions, for instance even a cloth tag in a T-shirt may be readily bound to a certain movement, example – a brief head extension, which then might become a tic – through tighter perception-action binding. The conceptualisation of tics as events comprising perception and action potentially opens up new treatment options.”

Professor Christian Beste and Dr Alexander Münchau

Avatar

I have to disagree on this on so many levels . The idea that all people with GTS get a premonitionary urge or can always suppress is extremely misleading. My son, along with many others, has zero premonitionary urge and when he tries to suppress using therapies such as ERP we saw a massive increase in daily tic and challenging behaviours caused by frustration at attempting to suppress.

I do not feel this study is anywhere near robust enough to make such a statement. Where is the longevity on the study ; seeing though to adulthood to get a better long term view? Or variable demographics with comprbids that greatly affect a persons ability to either suppress or recognise the urges?

The only thing I agree on is the repetitive movements being caused by a learned response ; like a DVD glitching in the same part of the film every time because of a scratch in the same place. In the same way, when a tic forms the basal ganglia send sends out a wrong motor or vocal signal and repeats the same way ; hence why tics are often contextual.

However to imply that GDT is a disorder of purposeful behaviour is both dismissive to those with the disorder and also shows great ignorance for those who aren’t straightforward due to the many comprbids that usually come with it.

There is a high rate of depression and even suicide amongst people with TS. My own son has ties to take his own life ages 12 became he hates himself and that he can’t stop this happening and e wants to be “normal “; this is not the action of someone who is purposefully creating the responses. This article seems to imply that with ERP or suppression therapies all people withGDT should be able to create new pathways of behaviour response and that’s simply not true.

A better study with a greater mix of those with GDT , from a variable demographic and for much longer term needs to be done. The semantics of this article implies choice response and sets the TS movement back years in trying to prove to the public this isn’t a behavioural disorder but one of neuro developmental issues that’s created wonky pathways.

If this theory were correct then everyone with GDT should be able to recognise the urge and ERP therapies would solve the issue for all, surely?? Yet what are the actual long term success rates of ERP and suppression based therapies? That has to be factored into this study! What are the impacts on rage attacks and challenging behaviours or tic increases caused by suppression? This has to be considered before assuming that a behaviour response has been made by some kind of Pavlovian response to tic and thus, those with GTS can all learn a new route to prevent repetitive responses! If only it were that simple.

All this will do is better supply the already archaic and ableist view that those with TS are doing it for effect and choice and not due to a neurological developmental glitch.

Instead why

Matt Kempen

Thank you for your engagement with the post published on our website, it is a summary of the paper – Petruo, V., Bodmer, B., Brandt, V. C., Baumung, L., Roessner, V., Münchau, A., & Beste, C. (2018). Altered perception-action binding modulates inhibitory control in Gilles de la Tourette syndrome. Journal of Child Psychology and Psychiatry https://doi.org/10.1111/jcpp.12938 published in the Journal of Child and Adolescent Psychology and Psychiatry.

We note that the original post on our website did not reference that it was a summary of the paper and apologise for this, we have now updated this. The original paper has gone through rigorous peer review.

The Association for Child and Adolescent Mental Health (ACAMH) is a membership organisation, and registered charity, with over 60 years’ experience in promoting the advancement of child and adolescent mental health through evidence based research. Our membership comprises a diverse group of clinicians, practitioners and world-leading child mental health researchers, working across an array of child and adolescent mental health domains. We aim to raise standards in the understanding and management of child mental health issues, bridging the gap between rigorous research and best practice.

Amongst our aims is the dissemination of evidence based information in relation to child and adolescent mental health, one way in which we do this is through posts on our website. We have a number of free resources that are accessible including Topic Guides and podcasts. You might be interested these in relation to Tourette Syndrome Thank you for your time.

The authors of the summary (and also the original paper) have provided a response to the comments from readers.

“We understand the reactions of the readers of our article and appreciate their clarity and openness.

One of the key points relates to the term “purpose” / “on purpose”. Running a Tourette clinic for both children and adults with Tourette syndrome for many years and after having spoken to and personally assessed many hundreds of patients there is no doubt that patients with tics / Tourette syndrome are not “making tics up”, or “choose” to have tics. It is absolutely clear that tics occur as extra movements and do not represent a “free choice” phenomenon.

What makes tics particularly problematic is that they resemble movements spontaneously occurring in anybody including for instance eye blinking, sniffing or throat clearing, or raising eyebrows, i.e. that they can so easily be misinterpreted as a voluntary movement. This sets them apart from other extra movements, for instance myoclonus or chorea, which are not part of the physiological movement repertoire.

The resemblance of tics and spontaneously occurring physiological movements that may not be noticed by the actor and also the fact that tics can be stopped, at least for some time, i.e. postponed, can lead to misinterpretation and problems not only on the side of the observer but also for the affected person with tics. When tics are noticed by the one who tics and by other people observing / hearing them, and the affected person experiences that tics can be stopped or postponed then this causes a great dilemma for the brain. Then, these movements have to be distinguished from other “useful”, i.e. goal directed or intentional movements. For instance, a raising eyebrow tic needs to be distinguished from a raising eyebrow movement as a sign of surprise. That such a process of distinction and the process of avoiding / stopping a tic can be very demanding, irritating, frustrating and time-consuming is very obvious.

Our view based on previous experiments that tics resemble spontaneous movements and have a lot in common with purposeful movements (but are not identical!) was intended to highlight the particular problems for the brain arising from such a resemblance. Because of such a resemblance – and misinterpretation by the observer – tics are so prone to stigmatisation and can be so detrimental for self-esteem. Because of a great similarity in the process of generation of spontaneous / intentional movements and tics in the brain, one possibility to strengthen the control of tics is to help patients becoming more aware of tic related processes in order to stop or “divert” them.

Another possibility might be not to focus on tics at all but to direct attention to other movements or processes, e.g. through mindfulness based treatments or attention training.

Which of these options works better for a given patient is often not clear. To tailor behavioral treatment to personal needs and preferences should be further developed in individualised treatment approaches.

Another point relates to premonitory sensations. We absolutely agree that these are often not present, particularly in younger children, who are not aware of their tics. The point we want to make is that the view of tics as pure motor phenomena falls short of their nature. Movements, including tics are driven by previous perceptual experiences and have perceptual consequences, may these be conscious or subconscious.

The binding of perceptual experience with movements may be different in people with tics. If such binding is stronger, then certain perceptions, for instance even a cloth tag in a T-shirt may be readily bound to a certain movement, example – a brief head extension, which then might become a tic – through tighter perception-action binding. The conceptualisation of tics as events comprising perception and action potentially opens up new treatment options.”

Professor Christian Beste and Dr Alexander Münchau

Avatar

Starting with the word “Neuropsychiatric”, and a couple of paragraphs in, it implies that because some of it can sometimes be “controlled”, that Tourette tics are “purposeful action”. A layman would interpret this as “Touretters can control it, it’s deliberate, so they should stop it”.

Acknowledging an “underlying neural mechanism”, but with an overall conclusion is that it’s a “Disorder of Purposeful Action”, which, as adults, we all know it is not, is harmful. Think about this: I’ve just finished explaining to the HR person what TS is to me, how I experience it, how I can’t help some of those things. They surf the net, and read this. “Well, Christine, this person with a PhD says you’re doing this on purpose. Stop it or you’re fired.” (Something akin to this happened to me – a lot more subtle, but it has derailed my career, no thanks to papers like these).

The way TS works in a kid’s brain might be dramatically different than how it affect an adult’s brain, and you as scientists are not only excluding us from actual research, you are missing an entire dimension to your observations by not including the only individuals who can articulate and contextualize what you see and observe: Adult Touretters.

Until you’ve been judged every time you leave the house to grocery shop, seen the look of disgust on people’s faces (directed at you) once you reveal those twitches are TS, until you’ve been passed up for promotions, jobs, or basic human decencies, you don’t know what Tourette is like.

You need to include Adult Touretter input in your studies and interpretations. You may have 10,000, 25,000 clinical hours. I have 400,000 hours of living with a Tourettic brain, full-time, and I’m telling you, though I may control some of it at times, none of it is done on purpose.

You can stop breathing for minute. Now can you stop breathing for a whole day? No. Same goes for tics.

Matt Kempen

Thank you for your engagement with the post published on our website, it is a summary of the paper – Petruo, V., Bodmer, B., Brandt, V. C., Baumung, L., Roessner, V., Münchau, A., & Beste, C. (2018). Altered perception-action binding modulates inhibitory control in Gilles de la Tourette syndrome. Journal of Child Psychology and Psychiatry https://doi.org/10.1111/jcpp.12938 published in the Journal of Child and Adolescent Psychology and Psychiatry.

We note that the original post on our website did not reference that it was a summary of the paper and apologise for this, we have now updated this. The original paper has gone through rigorous peer review.

The Association for Child and Adolescent Mental Health (ACAMH) is a membership organisation, and registered charity, with over 60 years’ experience in promoting the advancement of child and adolescent mental health through evidence based research. Our membership comprises a diverse group of clinicians, practitioners and world-leading child mental health researchers, working across an array of child and adolescent mental health domains. We aim to raise standards in the understanding and management of child mental health issues, bridging the gap between rigorous research and best practice.

Amongst our aims is the dissemination of evidence based information in relation to child and adolescent mental health, one way in which we do this is through posts on our website. We have a number of free resources that are accessible including Topic Guides and podcasts. You might be interested these in relation to Tourette Syndrome Thank you for your time.

The authors of the summary (and also the original paper) have provided a response to the comments from readers.

“We understand the reactions of the readers of our article and appreciate their clarity and openness.

One of the key points relates to the term “purpose” / “on purpose”. Running a Tourette clinic for both children and adults with Tourette syndrome for many years and after having spoken to and personally assessed many hundreds of patients there is no doubt that patients with tics / Tourette syndrome are not “making tics up”, or “choose” to have tics. It is absolutely clear that tics occur as extra movements and do not represent a “free choice” phenomenon.

What makes tics particularly problematic is that they resemble movements spontaneously occurring in anybody including for instance eye blinking, sniffing or throat clearing, or raising eyebrows, i.e. that they can so easily be misinterpreted as a voluntary movement. This sets them apart from other extra movements, for instance myoclonus or chorea, which are not part of the physiological movement repertoire.

The resemblance of tics and spontaneously occurring physiological movements that may not be noticed by the actor and also the fact that tics can be stopped, at least for some time, i.e. postponed, can lead to misinterpretation and problems not only on the side of the observer but also for the affected person with tics. When tics are noticed by the one who tics and by other people observing / hearing them, and the affected person experiences that tics can be stopped or postponed then this causes a great dilemma for the brain. Then, these movements have to be distinguished from other “useful”, i.e. goal directed or intentional movements. For instance, a raising eyebrow tic needs to be distinguished from a raising eyebrow movement as a sign of surprise. That such a process of distinction and the process of avoiding / stopping a tic can be very demanding, irritating, frustrating and time-consuming is very obvious.

Our view based on previous experiments that tics resemble spontaneous movements and have a lot in common with purposeful movements (but are not identical!) was intended to highlight the particular problems for the brain arising from such a resemblance. Because of such a resemblance – and misinterpretation by the observer – tics are so prone to stigmatisation and can be so detrimental for self-esteem. Because of a great similarity in the process of generation of spontaneous / intentional movements and tics in the brain, one possibility to strengthen the control of tics is to help patients becoming more aware of tic related processes in order to stop or “divert” them.

Another possibility might be not to focus on tics at all but to direct attention to other movements or processes, e.g. through mindfulness based treatments or attention training.

Which of these options works better for a given patient is often not clear. To tailor behavioral treatment to personal needs and preferences should be further developed in individualised treatment approaches.

Another point relates to premonitory sensations. We absolutely agree that these are often not present, particularly in younger children, who are not aware of their tics. The point we want to make is that the view of tics as pure motor phenomena falls short of their nature. Movements, including tics are driven by previous perceptual experiences and have perceptual consequences, may these be conscious or subconscious.

The binding of perceptual experience with movements may be different in people with tics. If such binding is stronger, then certain perceptions, for instance even a cloth tag in a T-shirt may be readily bound to a certain movement, example – a brief head extension, which then might become a tic – through tighter perception-action binding. The conceptualisation of tics as events comprising perception and action potentially opens up new treatment options.”

Professor Christian Beste and Dr Alexander Münchau

Avatar

I do not believe that the authors understand Tourette Syndrome or the past 10 years of related literature at all. Habit reversal therapy is no longer a recommended treatment for TS – CBIT is. Furthermore, specific neurological structural abnormalities have been associated with TS, most notably a specific tic-suppression network. This shows that people with TS do actively attempt to suppress tics, that doing so takes effort NOT seen in the suppression of purposeful behavior in PwTS or in healthy individuals, and that despite active efforts which can be seen real-time on an fMRI complete tic suppression is not possible. This “study”, if allowed to be taken seriously, stands to put movements for acceptance, equality, and proper treatment outcomes in Tourette Syndrome back at least twenty years.

Matt Kempen

Thank you for your engagement with the post published on our website, it is a summary of the paper – Petruo, V., Bodmer, B., Brandt, V. C., Baumung, L., Roessner, V., Münchau, A., & Beste, C. (2018). Altered perception-action binding modulates inhibitory control in Gilles de la Tourette syndrome. Journal of Child Psychology and Psychiatry https://doi.org/10.1111/jcpp.12938 published in the Journal of Child and Adolescent Psychology and Psychiatry.

We note that the original post on our website did not reference that it was a summary of the paper and apologise for this, we have now updated this. The original paper has gone through rigorous peer review.

The Association for Child and Adolescent Mental Health (ACAMH) is a membership organisation, and registered charity, with over 60 years’ experience in promoting the advancement of child and adolescent mental health through evidence based research. Our membership comprises a diverse group of clinicians, practitioners and world-leading child mental health researchers, working across an array of child and adolescent mental health domains. We aim to raise standards in the understanding and management of child mental health issues, bridging the gap between rigorous research and best practice.

Amongst our aims is the dissemination of evidence based information in relation to child and adolescent mental health, one way in which we do this is through posts on our website. We have a number of free resources that are accessible including Topic Guides and podcasts. You might be interested these in relation to Tourette Syndrome Thank you for your time.

The authors of the summary (and also the original paper) have provided a response to the comments from readers.

“We understand the reactions of the readers of our article and appreciate their clarity and openness.

One of the key points relates to the term “purpose” / “on purpose”. Running a Tourette clinic for both children and adults with Tourette syndrome for many years and after having spoken to and personally assessed many hundreds of patients there is no doubt that patients with tics / Tourette syndrome are not “making tics up”, or “choose” to have tics. It is absolutely clear that tics occur as extra movements and do not represent a “free choice” phenomenon.

What makes tics particularly problematic is that they resemble movements spontaneously occurring in anybody including for instance eye blinking, sniffing or throat clearing, or raising eyebrows, i.e. that they can so easily be misinterpreted as a voluntary movement. This sets them apart from other extra movements, for instance myoclonus or chorea, which are not part of the physiological movement repertoire.

The resemblance of tics and spontaneously occurring physiological movements that may not be noticed by the actor and also the fact that tics can be stopped, at least for some time, i.e. postponed, can lead to misinterpretation and problems not only on the side of the observer but also for the affected person with tics. When tics are noticed by the one who tics and by other people observing / hearing them, and the affected person experiences that tics can be stopped or postponed then this causes a great dilemma for the brain. Then, these movements have to be distinguished from other “useful”, i.e. goal directed or intentional movements. For instance, a raising eyebrow tic needs to be distinguished from a raising eyebrow movement as a sign of surprise. That such a process of distinction and the process of avoiding / stopping a tic can be very demanding, irritating, frustrating and time-consuming is very obvious.

Our view based on previous experiments that tics resemble spontaneous movements and have a lot in common with purposeful movements (but are not identical!) was intended to highlight the particular problems for the brain arising from such a resemblance. Because of such a resemblance – and misinterpretation by the observer – tics are so prone to stigmatisation and can be so detrimental for self-esteem. Because of a great similarity in the process of generation of spontaneous / intentional movements and tics in the brain, one possibility to strengthen the control of tics is to help patients becoming more aware of tic related processes in order to stop or “divert” them.

Another possibility might be not to focus on tics at all but to direct attention to other movements or processes, e.g. through mindfulness based treatments or attention training.

Which of these options works better for a given patient is often not clear. To tailor behavioral treatment to personal needs and preferences should be further developed in individualised treatment approaches.

Another point relates to premonitory sensations. We absolutely agree that these are often not present, particularly in younger children, who are not aware of their tics. The point we want to make is that the view of tics as pure motor phenomena falls short of their nature. Movements, including tics are driven by previous perceptual experiences and have perceptual consequences, may these be conscious or subconscious.

The binding of perceptual experience with movements may be different in people with tics. If such binding is stronger, then certain perceptions, for instance even a cloth tag in a T-shirt may be readily bound to a certain movement, example – a brief head extension, which then might become a tic – through tighter perception-action binding. The conceptualisation of tics as events comprising perception and action potentially opens up new treatment options.”

Professor Christian Beste and Dr Alexander Münchau

Avatar

Ts is not a habbit.. not a learned behaviour.
More research is needed.
Deep brain stimulation redirects signals stopping tics. Maybe do some research into that.
This “research” is ignorant to those that suffer from ts and their families. Do you really think they would tic if they could easily surpress. Not to mention all the associated disorders.

Matt Kempen

Thank you for your engagement with the post published on our website, it is a summary of the paper – Petruo, V., Bodmer, B., Brandt, V. C., Baumung, L., Roessner, V., Münchau, A., & Beste, C. (2018). Altered perception-action binding modulates inhibitory control in Gilles de la Tourette syndrome. Journal of Child Psychology and Psychiatry https://doi.org/10.1111/jcpp.12938 published in the Journal of Child and Adolescent Psychology and Psychiatry.

We note that the original post on our website did not reference that it was a summary of the paper and apologise for this, we have now updated this. The original paper has gone through rigorous peer review.

The Association for Child and Adolescent Mental Health (ACAMH) is a membership organisation, and registered charity, with over 60 years’ experience in promoting the advancement of child and adolescent mental health through evidence based research. Our membership comprises a diverse group of clinicians, practitioners and world-leading child mental health researchers, working across an array of child and adolescent mental health domains. We aim to raise standards in the understanding and management of child mental health issues, bridging the gap between rigorous research and best practice.

Amongst our aims is the dissemination of evidence based information in relation to child and adolescent mental health, one way in which we do this is through posts on our website. We have a number of free resources that are accessible including Topic Guides and podcasts. You might be interested these in relation to Tourette Syndrome Thank you for your time.

The authors of the summary (and also the original paper) have provided a response to the comments from readers.

“We understand the reactions of the readers of our article and appreciate their clarity and openness.

One of the key points relates to the term “purpose” / “on purpose”. Running a Tourette clinic for both children and adults with Tourette syndrome for many years and after having spoken to and personally assessed many hundreds of patients there is no doubt that patients with tics / Tourette syndrome are not “making tics up”, or “choose” to have tics. It is absolutely clear that tics occur as extra movements and do not represent a “free choice” phenomenon.

What makes tics particularly problematic is that they resemble movements spontaneously occurring in anybody including for instance eye blinking, sniffing or throat clearing, or raising eyebrows, i.e. that they can so easily be misinterpreted as a voluntary movement. This sets them apart from other extra movements, for instance myoclonus or chorea, which are not part of the physiological movement repertoire.

The resemblance of tics and spontaneously occurring physiological movements that may not be noticed by the actor and also the fact that tics can be stopped, at least for some time, i.e. postponed, can lead to misinterpretation and problems not only on the side of the observer but also for the affected person with tics. When tics are noticed by the one who tics and by other people observing / hearing them, and the affected person experiences that tics can be stopped or postponed then this causes a great dilemma for the brain. Then, these movements have to be distinguished from other “useful”, i.e. goal directed or intentional movements. For instance, a raising eyebrow tic needs to be distinguished from a raising eyebrow movement as a sign of surprise. That such a process of distinction and the process of avoiding / stopping a tic can be very demanding, irritating, frustrating and time-consuming is very obvious.

Our view based on previous experiments that tics resemble spontaneous movements and have a lot in common with purposeful movements (but are not identical!) was intended to highlight the particular problems for the brain arising from such a resemblance. Because of such a resemblance – and misinterpretation by the observer – tics are so prone to stigmatisation and can be so detrimental for self-esteem. Because of a great similarity in the process of generation of spontaneous / intentional movements and tics in the brain, one possibility to strengthen the control of tics is to help patients becoming more aware of tic related processes in order to stop or “divert” them.

Another possibility might be not to focus on tics at all but to direct attention to other movements or processes, e.g. through mindfulness based treatments or attention training.

Which of these options works better for a given patient is often not clear. To tailor behavioral treatment to personal needs and preferences should be further developed in individualised treatment approaches.

Another point relates to premonitory sensations. We absolutely agree that these are often not present, particularly in younger children, who are not aware of their tics. The point we want to make is that the view of tics as pure motor phenomena falls short of their nature. Movements, including tics are driven by previous perceptual experiences and have perceptual consequences, may these be conscious or subconscious.

The binding of perceptual experience with movements may be different in people with tics. If such binding is stronger, then certain perceptions, for instance even a cloth tag in a T-shirt may be readily bound to a certain movement, example – a brief head extension, which then might become a tic – through tighter perception-action binding. The conceptualisation of tics as events comprising perception and action potentially opens up new treatment options.”

Professor Christian Beste and Dr Alexander Münchau

Avatar

The implication that tics and the disorder are purposeful actions , because when my knees dislocate and i require hospital treatment because of the pain and i can’t walk ,it’s always been a purposeful action that has made me do it … Not! Or any tic for that matter . And when Tic attacks occur causing injuries ,when vocal tic’s end up with you being attacked and ridiculed ,filmed followed ,laughed plus many many more negative thing that we experience due to TS or GTS as you say . I challenge any of the authors of this article to try and last an hour in the shoes of one of our children ,who dread school and all the negative attention TS brings even some children have taken their own life because of living with this condition . I find this article offensive . And it will have a negative impact as far as education and understanding of such a complex neurological condition is concerned .Please feel free to contact me , i am an adult living with this condition ,i am more than happy to articulate to you what it is really like to live with this debilitating condition . And how wreckless and damaging putting an article out like this can be .

Matt Kempen

Thank you for your engagement with the post published on our website, it is a summary of the paper – Petruo, V., Bodmer, B., Brandt, V. C., Baumung, L., Roessner, V., Münchau, A., & Beste, C. (2018). Altered perception-action binding modulates inhibitory control in Gilles de la Tourette syndrome. Journal of Child Psychology and Psychiatry https://doi.org/10.1111/jcpp.12938 published in the Journal of Child and Adolescent Psychology and Psychiatry.

We note that the original post on our website did not reference that it was a summary of the paper and apologise for this, we have now updated this. The original paper has gone through rigorous peer review.

The Association for Child and Adolescent Mental Health (ACAMH) is a membership organisation, and registered charity, with over 60 years’ experience in promoting the advancement of child and adolescent mental health through evidence based research. Our membership comprises a diverse group of clinicians, practitioners and world-leading child mental health researchers, working across an array of child and adolescent mental health domains. We aim to raise standards in the understanding and management of child mental health issues, bridging the gap between rigorous research and best practice.

Amongst our aims is the dissemination of evidence based information in relation to child and adolescent mental health, one way in which we do this is through posts on our website. We have a number of free resources that are accessible including Topic Guides and podcasts. You might be interested these in relation to Tourette Syndrome Thank you for your time.

The authors of the summary (and also the original paper) have provided a response to the comments from readers.

“We understand the reactions of the readers of our article and appreciate their clarity and openness.

One of the key points relates to the term “purpose” / “on purpose”. Running a Tourette clinic for both children and adults with Tourette syndrome for many years and after having spoken to and personally assessed many hundreds of patients there is no doubt that patients with tics / Tourette syndrome are not “making tics up”, or “choose” to have tics. It is absolutely clear that tics occur as extra movements and do not represent a “free choice” phenomenon.

What makes tics particularly problematic is that they resemble movements spontaneously occurring in anybody including for instance eye blinking, sniffing or throat clearing, or raising eyebrows, i.e. that they can so easily be misinterpreted as a voluntary movement. This sets them apart from other extra movements, for instance myoclonus or chorea, which are not part of the physiological movement repertoire.

The resemblance of tics and spontaneously occurring physiological movements that may not be noticed by the actor and also the fact that tics can be stopped, at least for some time, i.e. postponed, can lead to misinterpretation and problems not only on the side of the observer but also for the affected person with tics. When tics are noticed by the one who tics and by other people observing / hearing them, and the affected person experiences that tics can be stopped or postponed then this causes a great dilemma for the brain. Then, these movements have to be distinguished from other “useful”, i.e. goal directed or intentional movements. For instance, a raising eyebrow tic needs to be distinguished from a raising eyebrow movement as a sign of surprise. That such a process of distinction and the process of avoiding / stopping a tic can be very demanding, irritating, frustrating and time-consuming is very obvious.

Our view based on previous experiments that tics resemble spontaneous movements and have a lot in common with purposeful movements (but are not identical!) was intended to highlight the particular problems for the brain arising from such a resemblance. Because of such a resemblance – and misinterpretation by the observer – tics are so prone to stigmatisation and can be so detrimental for self-esteem. Because of a great similarity in the process of generation of spontaneous / intentional movements and tics in the brain, one possibility to strengthen the control of tics is to help patients becoming more aware of tic related processes in order to stop or “divert” them.

Another possibility might be not to focus on tics at all but to direct attention to other movements or processes, e.g. through mindfulness based treatments or attention training.

Which of these options works better for a given patient is often not clear. To tailor behavioral treatment to personal needs and preferences should be further developed in individualised treatment approaches.

Another point relates to premonitory sensations. We absolutely agree that these are often not present, particularly in younger children, who are not aware of their tics. The point we want to make is that the view of tics as pure motor phenomena falls short of their nature. Movements, including tics are driven by previous perceptual experiences and have perceptual consequences, may these be conscious or subconscious.

The binding of perceptual experience with movements may be different in people with tics. If such binding is stronger, then certain perceptions, for instance even a cloth tag in a T-shirt may be readily bound to a certain movement, example – a brief head extension, which then might become a tic – through tighter perception-action binding. The conceptualisation of tics as events comprising perception and action potentially opens up new treatment options.”

Professor Christian Beste and Dr Alexander Münchau

Avatar

How do you justify making such audacious presumptions about TS based solely on your own misguided presumptions and the results of two badly executed studies? Given the large body of evidence that clearly shows that TS tic urges are not
voluntary despite the premonitary urges some with TS experience. Suppression of tics is an exhausting process, is only temporary and comes with considerable psyco-emotional and physical risks. Risks include increased anxiety and the potential for fractures and soft tissue injuries. If you had any iota of expertise or credible interest in Tourette’s throughout the life span; you would be aware of these issues and not trying to discount what is already known and documented about Tourette’s. You have deeply upset myself and many other members of the global TS community with your invalidated assumptions. I suggest you do your own properly executed research ( with stronger methodologies and conclusions than those you quoted) to really understand the nature of TS.

Matt Kempen

Thank you for your engagement with the post published on our website, it is a summary of the paper – Petruo, V., Bodmer, B., Brandt, V. C., Baumung, L., Roessner, V., Münchau, A., & Beste, C. (2018). Altered perception-action binding modulates inhibitory control in Gilles de la Tourette syndrome. Journal of Child Psychology and Psychiatry https://doi.org/10.1111/jcpp.12938 published in the Journal of Child and Adolescent Psychology and Psychiatry.

We note that the original post on our website did not reference that it was a summary of the paper and apologise for this, we have now updated this. The original paper has gone through rigorous peer review.

The Association for Child and Adolescent Mental Health (ACAMH) is a membership organisation, and registered charity, with over 60 years’ experience in promoting the advancement of child and adolescent mental health through evidence based research. Our membership comprises a diverse group of clinicians, practitioners and world-leading child mental health researchers, working across an array of child and adolescent mental health domains. We aim to raise standards in the understanding and management of child mental health issues, bridging the gap between rigorous research and best practice.

Amongst our aims is the dissemination of evidence based information in relation to child and adolescent mental health, one way in which we do this is through posts on our website. We have a number of free resources that are accessible including Topic Guides and podcasts. You might be interested these in relation to Tourette Syndrome Thank you for your time.

The authors of the summary (and also the original paper) have provided a response to the comments from readers.

“We understand the reactions of the readers of our article and appreciate their clarity and openness.

One of the key points relates to the term “purpose” / “on purpose”. Running a Tourette clinic for both children and adults with Tourette syndrome for many years and after having spoken to and personally assessed many hundreds of patients there is no doubt that patients with tics / Tourette syndrome are not “making tics up”, or “choose” to have tics. It is absolutely clear that tics occur as extra movements and do not represent a “free choice” phenomenon.

What makes tics particularly problematic is that they resemble movements spontaneously occurring in anybody including for instance eye blinking, sniffing or throat clearing, or raising eyebrows, i.e. that they can so easily be misinterpreted as a voluntary movement. This sets them apart from other extra movements, for instance myoclonus or chorea, which are not part of the physiological movement repertoire.

The resemblance of tics and spontaneously occurring physiological movements that may not be noticed by the actor and also the fact that tics can be stopped, at least for some time, i.e. postponed, can lead to misinterpretation and problems not only on the side of the observer but also for the affected person with tics. When tics are noticed by the one who tics and by other people observing / hearing them, and the affected person experiences that tics can be stopped or postponed then this causes a great dilemma for the brain. Then, these movements have to be distinguished from other “useful”, i.e. goal directed or intentional movements. For instance, a raising eyebrow tic needs to be distinguished from a raising eyebrow movement as a sign of surprise. That such a process of distinction and the process of avoiding / stopping a tic can be very demanding, irritating, frustrating and time-consuming is very obvious.

Our view based on previous experiments that tics resemble spontaneous movements and have a lot in common with purposeful movements (but are not identical!) was intended to highlight the particular problems for the brain arising from such a resemblance. Because of such a resemblance – and misinterpretation by the observer – tics are so prone to stigmatisation and can be so detrimental for self-esteem. Because of a great similarity in the process of generation of spontaneous / intentional movements and tics in the brain, one possibility to strengthen the control of tics is to help patients becoming more aware of tic related processes in order to stop or “divert” them.

Another possibility might be not to focus on tics at all but to direct attention to other movements or processes, e.g. through mindfulness based treatments or attention training.

Which of these options works better for a given patient is often not clear. To tailor behavioral treatment to personal needs and preferences should be further developed in individualised treatment approaches.

Another point relates to premonitory sensations. We absolutely agree that these are often not present, particularly in younger children, who are not aware of their tics. The point we want to make is that the view of tics as pure motor phenomena falls short of their nature. Movements, including tics are driven by previous perceptual experiences and have perceptual consequences, may these be conscious or subconscious.

The binding of perceptual experience with movements may be different in people with tics. If such binding is stronger, then certain perceptions, for instance even a cloth tag in a T-shirt may be readily bound to a certain movement, example – a brief head extension, which then might become a tic – through tighter perception-action binding. The conceptualisation of tics as events comprising perception and action potentially opens up new treatment options.”

Professor Christian Beste and Dr Alexander Münchau

Avatar

Tics can cause excruciating pain and extreme distress, why would anybody do these on purpose? My tics severely disabled me, I was unable to dress myself, walk up stairs, use the toilet in my own home or sleep in a room on my own- why would I do this on purpose? This research will lead to ineffective treatment for TS- where people will be be blamed for something they have no control over and it will ruin people’s self esteem. I have found that one aspect of my TS is down to a histamine issue, that causes certain allergens to trigger inflammation in the brain. I used to beg my parents to make my tics stop… So why would anyone do it on purpose? Suppressing my tics leads to an incredibly uncomfortable and sometimes painful sensation that can cause extreme distress so I know from personal experience that tics are uncontrollable and we can’t “learn” not to tic, it is a neurobiological imbalance.

Matt Kempen

Thank you for your engagement with the post published on our website, it is a summary of the paper – Petruo, V., Bodmer, B., Brandt, V. C., Baumung, L., Roessner, V., Münchau, A., & Beste, C. (2018). Altered perception-action binding modulates inhibitory control in Gilles de la Tourette syndrome. Journal of Child Psychology and Psychiatry https://doi.org/10.1111/jcpp.12938 published in the Journal of Child and Adolescent Psychology and Psychiatry.

We note that the original post on our website did not reference that it was a summary of the paper and apologise for this, we have now updated this. The original paper has gone through rigorous peer review.

The Association for Child and Adolescent Mental Health (ACAMH) is a membership organisation, and registered charity, with over 60 years’ experience in promoting the advancement of child and adolescent mental health through evidence based research. Our membership comprises a diverse group of clinicians, practitioners and world-leading child mental health researchers, working across an array of child and adolescent mental health domains. We aim to raise standards in the understanding and management of child mental health issues, bridging the gap between rigorous research and best practice.

Amongst our aims is the dissemination of evidence based information in relation to child and adolescent mental health, one way in which we do this is through posts on our website. We have a number of free resources that are accessible including Topic Guides and podcasts. You might be interested these in relation to Tourette Syndrome Thank you for your time.

The authors of the summary (and also the original paper) have provided a response to the comments from readers.

“We understand the reactions of the readers of our article and appreciate their clarity and openness.

One of the key points relates to the term “purpose” / “on purpose”. Running a Tourette clinic for both children and adults with Tourette syndrome for many years and after having spoken to and personally assessed many hundreds of patients there is no doubt that patients with tics / Tourette syndrome are not “making tics up”, or “choose” to have tics. It is absolutely clear that tics occur as extra movements and do not represent a “free choice” phenomenon.

What makes tics particularly problematic is that they resemble movements spontaneously occurring in anybody including for instance eye blinking, sniffing or throat clearing, or raising eyebrows, i.e. that they can so easily be misinterpreted as a voluntary movement. This sets them apart from other extra movements, for instance myoclonus or chorea, which are not part of the physiological movement repertoire.

The resemblance of tics and spontaneously occurring physiological movements that may not be noticed by the actor and also the fact that tics can be stopped, at least for some time, i.e. postponed, can lead to misinterpretation and problems not only on the side of the observer but also for the affected person with tics. When tics are noticed by the one who tics and by other people observing / hearing them, and the affected person experiences that tics can be stopped or postponed then this causes a great dilemma for the brain. Then, these movements have to be distinguished from other “useful”, i.e. goal directed or intentional movements. For instance, a raising eyebrow tic needs to be distinguished from a raising eyebrow movement as a sign of surprise. That such a process of distinction and the process of avoiding / stopping a tic can be very demanding, irritating, frustrating and time-consuming is very obvious.

Our view based on previous experiments that tics resemble spontaneous movements and have a lot in common with purposeful movements (but are not identical!) was intended to highlight the particular problems for the brain arising from such a resemblance. Because of such a resemblance – and misinterpretation by the observer – tics are so prone to stigmatisation and can be so detrimental for self-esteem. Because of a great similarity in the process of generation of spontaneous / intentional movements and tics in the brain, one possibility to strengthen the control of tics is to help patients becoming more aware of tic related processes in order to stop or “divert” them.

Another possibility might be not to focus on tics at all but to direct attention to other movements or processes, e.g. through mindfulness based treatments or attention training.

Which of these options works better for a given patient is often not clear. To tailor behavioral treatment to personal needs and preferences should be further developed in individualised treatment approaches.

Another point relates to premonitory sensations. We absolutely agree that these are often not present, particularly in younger children, who are not aware of their tics. The point we want to make is that the view of tics as pure motor phenomena falls short of their nature. Movements, including tics are driven by previous perceptual experiences and have perceptual consequences, may these be conscious or subconscious.

The binding of perceptual experience with movements may be different in people with tics. If such binding is stronger, then certain perceptions, for instance even a cloth tag in a T-shirt may be readily bound to a certain movement, example – a brief head extension, which then might become a tic – through tighter perception-action binding. The conceptualisation of tics as events comprising perception and action potentially opens up new treatment options.”

Professor Christian Beste and Dr Alexander Münchau

Avatar

As a fan of science and challenge, I appreciate what this research is trying to uncover. As a Touretter, I think this article’s wording may further the wrong idea about Tourette Syndrome. The end-of-the-day note from Touretters to the rest of the world is: We can’t “control” it; not in the way people think we might. We may have clever ways of attempting to adapt or morph our tics into more socially acceptable sounds or movements, but there’s limited wiggle room and these efforts often fail (a truth in my case and in the case of Touretters around the world I’ve spoken with). Undercutting that may not be the intention of the research or reporting here, but when people read words like “tics can be controlled” and “purposeful actions,” there’s a chance that readers will come away with a perspective or even expectation that anyone with TS can take meaningful strides to ultimately tic less or not at all. That’s a bad expectation and it undermines the smarter, better outcome for everyone: that people with TS are accepted because society understands that the tics or more or less uncontrollable. Yes, there are medication-free therapies people champion for results in reducing or adapting tics. I’m interested. But we have to be careful with our wording here. Having TS is difficult enough and public acceptance is what we’ve been fighting for for so long. Let’s just be careful about it, please. For future studies, it’ll be important to include more people who have TS.

Matt Kempen

Thank you for your engagement with the post published on our website, it is a summary of the paper – Petruo, V., Bodmer, B., Brandt, V. C., Baumung, L., Roessner, V., Münchau, A., & Beste, C. (2018). Altered perception-action binding modulates inhibitory control in Gilles de la Tourette syndrome. Journal of Child Psychology and Psychiatry https://doi.org/10.1111/jcpp.12938 published in the Journal of Child and Adolescent Psychology and Psychiatry.

We note that the original post on our website did not reference that it was a summary of the paper and apologise for this, we have now updated this. The original paper has gone through rigorous peer review.

The Association for Child and Adolescent Mental Health (ACAMH) is a membership organisation, and registered charity, with over 60 years’ experience in promoting the advancement of child and adolescent mental health through evidence based research. Our membership comprises a diverse group of clinicians, practitioners and world-leading child mental health researchers, working across an array of child and adolescent mental health domains. We aim to raise standards in the understanding and management of child mental health issues, bridging the gap between rigorous research and best practice.

Amongst our aims is the dissemination of evidence based information in relation to child and adolescent mental health, one way in which we do this is through posts on our website. We have a number of free resources that are accessible including Topic Guides and podcasts. You might be interested these in relation to Tourette Syndrome Thank you for your time.

The authors of the summary (and also the original paper) have provided a response to the comments from readers.

“We understand the reactions of the readers of our article and appreciate their clarity and openness.

One of the key points relates to the term “purpose” / “on purpose”. Running a Tourette clinic for both children and adults with Tourette syndrome for many years and after having spoken to and personally assessed many hundreds of patients there is no doubt that patients with tics / Tourette syndrome are not “making tics up”, or “choose” to have tics. It is absolutely clear that tics occur as extra movements and do not represent a “free choice” phenomenon.

What makes tics particularly problematic is that they resemble movements spontaneously occurring in anybody including for instance eye blinking, sniffing or throat clearing, or raising eyebrows, i.e. that they can so easily be misinterpreted as a voluntary movement. This sets them apart from other extra movements, for instance myoclonus or chorea, which are not part of the physiological movement repertoire.

The resemblance of tics and spontaneously occurring physiological movements that may not be noticed by the actor and also the fact that tics can be stopped, at least for some time, i.e. postponed, can lead to misinterpretation and problems not only on the side of the observer but also for the affected person with tics. When tics are noticed by the one who tics and by other people observing / hearing them, and the affected person experiences that tics can be stopped or postponed then this causes a great dilemma for the brain. Then, these movements have to be distinguished from other “useful”, i.e. goal directed or intentional movements. For instance, a raising eyebrow tic needs to be distinguished from a raising eyebrow movement as a sign of surprise. That such a process of distinction and the process of avoiding / stopping a tic can be very demanding, irritating, frustrating and time-consuming is very obvious.

Our view based on previous experiments that tics resemble spontaneous movements and have a lot in common with purposeful movements (but are not identical!) was intended to highlight the particular problems for the brain arising from such a resemblance. Because of such a resemblance – and misinterpretation by the observer – tics are so prone to stigmatisation and can be so detrimental for self-esteem. Because of a great similarity in the process of generation of spontaneous / intentional movements and tics in the brain, one possibility to strengthen the control of tics is to help patients becoming more aware of tic related processes in order to stop or “divert” them.

Another possibility might be not to focus on tics at all but to direct attention to other movements or processes, e.g. through mindfulness based treatments or attention training.

Which of these options works better for a given patient is often not clear. To tailor behavioral treatment to personal needs and preferences should be further developed in individualised treatment approaches.

Another point relates to premonitory sensations. We absolutely agree that these are often not present, particularly in younger children, who are not aware of their tics. The point we want to make is that the view of tics as pure motor phenomena falls short of their nature. Movements, including tics are driven by previous perceptual experiences and have perceptual consequences, may these be conscious or subconscious.

The binding of perceptual experience with movements may be different in people with tics. If such binding is stronger, then certain perceptions, for instance even a cloth tag in a T-shirt may be readily bound to a certain movement, example – a brief head extension, which then might become a tic – through tighter perception-action binding. The conceptualisation of tics as events comprising perception and action potentially opens up new treatment options.”

Professor Christian Beste and Dr Alexander Münchau

Avatar

This is not accurate information. My 8 year old son does NOT want to wave his hands, look to the side over an over again, make sounds, clear his throughly, and role his eye so much that his eyes and head hurt. This is not purposeful! It is no more purposeful than any other neurological disorder like Parkinson’s or epilepsy. Talk to people who actually live with Tourette’s, then write an article

Matt Kempen

Thank you for your engagement with the post published on our website, it is a summary of the paper – Petruo, V., Bodmer, B., Brandt, V. C., Baumung, L., Roessner, V., Münchau, A., & Beste, C. (2018). Altered perception-action binding modulates inhibitory control in Gilles de la Tourette syndrome. Journal of Child Psychology and Psychiatry https://doi.org/10.1111/jcpp.12938 published in the Journal of Child and Adolescent Psychology and Psychiatry.

We note that the original post on our website did not reference that it was a summary of the paper and apologise for this, we have now updated this. The original paper has gone through rigorous peer review.

The Association for Child and Adolescent Mental Health (ACAMH) is a membership organisation, and registered charity, with over 60 years’ experience in promoting the advancement of child and adolescent mental health through evidence based research. Our membership comprises a diverse group of clinicians, practitioners and world-leading child mental health researchers, working across an array of child and adolescent mental health domains. We aim to raise standards in the understanding and management of child mental health issues, bridging the gap between rigorous research and best practice.

Amongst our aims is the dissemination of evidence based information in relation to child and adolescent mental health, one way in which we do this is through posts on our website. We have a number of free resources that are accessible including Topic Guides and podcasts. You might be interested these in relation to Tourette Syndrome Thank you for your time.

The authors of the summary (and also the original paper) have provided a response to the comments from readers.

“We understand the reactions of the readers of our article and appreciate their clarity and openness.

One of the key points relates to the term “purpose” / “on purpose”. Running a Tourette clinic for both children and adults with Tourette syndrome for many years and after having spoken to and personally assessed many hundreds of patients there is no doubt that patients with tics / Tourette syndrome are not “making tics up”, or “choose” to have tics. It is absolutely clear that tics occur as extra movements and do not represent a “free choice” phenomenon.

What makes tics particularly problematic is that they resemble movements spontaneously occurring in anybody including for instance eye blinking, sniffing or throat clearing, or raising eyebrows, i.e. that they can so easily be misinterpreted as a voluntary movement. This sets them apart from other extra movements, for instance myoclonus or chorea, which are not part of the physiological movement repertoire.

The resemblance of tics and spontaneously occurring physiological movements that may not be noticed by the actor and also the fact that tics can be stopped, at least for some time, i.e. postponed, can lead to misinterpretation and problems not only on the side of the observer but also for the affected person with tics. When tics are noticed by the one who tics and by other people observing / hearing them, and the affected person experiences that tics can be stopped or postponed then this causes a great dilemma for the brain. Then, these movements have to be distinguished from other “useful”, i.e. goal directed or intentional movements. For instance, a raising eyebrow tic needs to be distinguished from a raising eyebrow movement as a sign of surprise. That such a process of distinction and the process of avoiding / stopping a tic can be very demanding, irritating, frustrating and time-consuming is very obvious.

Our view based on previous experiments that tics resemble spontaneous movements and have a lot in common with purposeful movements (but are not identical!) was intended to highlight the particular problems for the brain arising from such a resemblance. Because of such a resemblance – and misinterpretation by the observer – tics are so prone to stigmatisation and can be so detrimental for self-esteem. Because of a great similarity in the process of generation of spontaneous / intentional movements and tics in the brain, one possibility to strengthen the control of tics is to help patients becoming more aware of tic related processes in order to stop or “divert” them.

Another possibility might be not to focus on tics at all but to direct attention to other movements or processes, e.g. through mindfulness based treatments or attention training.

Which of these options works better for a given patient is often not clear. To tailor behavioral treatment to personal needs and preferences should be further developed in individualised treatment approaches.

Another point relates to premonitory sensations. We absolutely agree that these are often not present, particularly in younger children, who are not aware of their tics. The point we want to make is that the view of tics as pure motor phenomena falls short of their nature. Movements, including tics are driven by previous perceptual experiences and have perceptual consequences, may these be conscious or subconscious.

The binding of perceptual experience with movements may be different in people with tics. If such binding is stronger, then certain perceptions, for instance even a cloth tag in a T-shirt may be readily bound to a certain movement, example – a brief head extension, which then might become a tic – through tighter perception-action binding. The conceptualisation of tics as events comprising perception and action potentially opens up new treatment options.”

Professor Christian Beste and Dr Alexander Münchau

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Ok answer this – would i purposefully tic my head back – known as the whiplash tic – which has been slowly paralyzing parts of my body for years, yes I had DBS – deep brain stimulation operation in 2012 (Which alone had it’s risks) it reduced most tics but still my whiplash tic has done severe long lasting damage, I can’t walk without assistance, I can’t balance, I use catheters, my smaller fingers are curling under due to cervical cord damage – proven by neurologists that this is caused by my whiplash head tic.
I recently had DBS redone as a wire was out of place on the left side of my brain.
I use a wheelchair if I need to go out, i can’t go alone..
Other tics for example like my wrists & ankles are so severe I worry I could break a bone one day, and the tic wrenching of my stomach causes pain for days afterwards.. these are just a few of my tics.
Why would I purposefully do This? I’m 26 & had this since childhood
Don’t think I’ve ever felt so offended!

Matt Kempen

Thank you for your engagement with the post published on our website, it is a summary of the paper – Petruo, V., Bodmer, B., Brandt, V. C., Baumung, L., Roessner, V., Münchau, A., & Beste, C. (2018). Altered perception-action binding modulates inhibitory control in Gilles de la Tourette syndrome. Journal of Child Psychology and Psychiatry https://doi.org/10.1111/jcpp.12938 published in the Journal of Child and Adolescent Psychology and Psychiatry.

We note that the original post on our website did not reference that it was a summary of the paper and apologise for this, we have now updated this. The original paper has gone through rigorous peer review.

The Association for Child and Adolescent Mental Health (ACAMH) is a membership organisation, and registered charity, with over 60 years’ experience in promoting the advancement of child and adolescent mental health through evidence based research. Our membership comprises a diverse group of clinicians, practitioners and world-leading child mental health researchers, working across an array of child and adolescent mental health domains. We aim to raise standards in the understanding and management of child mental health issues, bridging the gap between rigorous research and best practice.

Amongst our aims is the dissemination of evidence based information in relation to child and adolescent mental health, one way in which we do this is through posts on our website. We have a number of free resources that are accessible including Topic Guides and podcasts. You might be interested these in relation to Tourette Syndrome Thank you for your time.

The authors of the summary (and also the original paper) have provided a response to the comments from readers.

“We understand the reactions of the readers of our article and appreciate their clarity and openness.

One of the key points relates to the term “purpose” / “on purpose”. Running a Tourette clinic for both children and adults with Tourette syndrome for many years and after having spoken to and personally assessed many hundreds of patients there is no doubt that patients with tics / Tourette syndrome are not “making tics up”, or “choose” to have tics. It is absolutely clear that tics occur as extra movements and do not represent a “free choice” phenomenon.

What makes tics particularly problematic is that they resemble movements spontaneously occurring in anybody including for instance eye blinking, sniffing or throat clearing, or raising eyebrows, i.e. that they can so easily be misinterpreted as a voluntary movement. This sets them apart from other extra movements, for instance myoclonus or chorea, which are not part of the physiological movement repertoire.

The resemblance of tics and spontaneously occurring physiological movements that may not be noticed by the actor and also the fact that tics can be stopped, at least for some time, i.e. postponed, can lead to misinterpretation and problems not only on the side of the observer but also for the affected person with tics. When tics are noticed by the one who tics and by other people observing / hearing them, and the affected person experiences that tics can be stopped or postponed then this causes a great dilemma for the brain. Then, these movements have to be distinguished from other “useful”, i.e. goal directed or intentional movements. For instance, a raising eyebrow tic needs to be distinguished from a raising eyebrow movement as a sign of surprise. That such a process of distinction and the process of avoiding / stopping a tic can be very demanding, irritating, frustrating and time-consuming is very obvious.

Our view based on previous experiments that tics resemble spontaneous movements and have a lot in common with purposeful movements (but are not identical!) was intended to highlight the particular problems for the brain arising from such a resemblance. Because of such a resemblance – and misinterpretation by the observer – tics are so prone to stigmatisation and can be so detrimental for self-esteem. Because of a great similarity in the process of generation of spontaneous / intentional movements and tics in the brain, one possibility to strengthen the control of tics is to help patients becoming more aware of tic related processes in order to stop or “divert” them.

Another possibility might be not to focus on tics at all but to direct attention to other movements or processes, e.g. through mindfulness based treatments or attention training.

Which of these options works better for a given patient is often not clear. To tailor behavioral treatment to personal needs and preferences should be further developed in individualised treatment approaches.

Another point relates to premonitory sensations. We absolutely agree that these are often not present, particularly in younger children, who are not aware of their tics. The point we want to make is that the view of tics as pure motor phenomena falls short of their nature. Movements, including tics are driven by previous perceptual experiences and have perceptual consequences, may these be conscious or subconscious.

The binding of perceptual experience with movements may be different in people with tics. If such binding is stronger, then certain perceptions, for instance even a cloth tag in a T-shirt may be readily bound to a certain movement, example – a brief head extension, which then might become a tic – through tighter perception-action binding. The conceptualisation of tics as events comprising perception and action potentially opens up new treatment options.”

Professor Christian Beste and Dr Alexander Münchau

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