Myths and Facts about TS
by Roger D. Freeman, MD, Chair, TSFC Professional Advisory Board
Ten years ago most professionals had never heard of TS, or if they had, they would likely have said that they had never actually seen a case. To them this was not surprising, since TS was reputed to be rare. This was IGNORANCE, and we combated it with great success. Now we have another problem as a result of that success: CONFUSION. This affects all of us, professionals, parents and the general public.
At this still rather primitive stage of our knowlege, controversy is to be expected. Although we sometimes forget to do so, what is controversial should be labelled as such. I have included here a few of the areas that need clarification.
FACT: TS is a Fuzzy Concept
For scientific and research purposes we need criteria or definitions, but these do not necessarily coincide with what persons with TS feel they "have." And since we do not know the precise mechanism of TS, or have a test for it, this leaves lots of opportunities for confusion.
Here are some problems:
FACT: Tic Disorders are Inherited
As mentioned above, the boundaries of what we diagnose as TS are arbitrary. We know that other tic disorders and probably OCD are more common in families with a TS member. Therefore it is not TS (as a "thing") that is inherited, but a tic spectrum disorder, of which what we call "TS" is a relatively uncommon part. If you have TS, the chance of one of your children having a tic spectrum disorder is approximately 50% for males and 30% for females. The chance of having TS could be much less, and if your child does develop TS, it's likely to be simple and mild (since that is more common), rather than extreme. There is some evidence that if there is a tic spectrum disorder on both sides of the family, there is a greater likelihood of more severe symptoms. This area is still very confusing for new parents and for genetic counseling.
MYTH: Coprolalia is necessary for Diagnosis (or is Common)
For those unfamiliar with TS diagnosis, this is one of the worst of the myths. It is of course often the most dramatic symptom that catches the media's attention, but it only occurs in a minority of cases and is often short lived, rather than chronic. This myth may lead to misdiagnosis or delayed diagnosis, as well as prejudice against persons with TS.
Co-mobidity -- What is "Associated" with TS?
Most cases of TS are not clinically identified because they are simple tics and never reach a point where families are looking for a diagnosis. Having more than one problem will increase your chances of going to see a physician and getting a diagnosis. Because clinics will see more cases where more than one problem exists our sample for research purposes will ultimately be "biased" and generally so will any support group. Therefore it is hard to say whether another co-occuring problem or condition truly is more common than would normally be expected. A good example is sleep disorder, reported by several clinics to be more common. Research shows that those in whom it occurs are likely to have TS + AD/HD, not just simple TS. Our clinical data supports this finding. If we had cases of simple TS included in these findings would it still be viewed as common?
There are two other areas that can be mentioned:
MYTH: Anger and Rage are much more common in TS
These words do not reflect a single type of behaviour. The behaviour we label needs to be further delineated as to what precedes and follows the behaviour, how long the build-up takes, the duration of the episode, and what makes it better or worse. (This is the same kind of careful analysis we are expected to do with any symptom.) Although angry episodes can indeed be a major problem for some persons with TS, many children and adults without TS have bad tempers, too.
Claims that this is more common amongst those with TS, or has unique characteristics, should be tempered with caution until better information is available. We are now seeing the ultimate confusion: children or adults referred without any tic history, but whose outbursts of anger are interpreted as "tic equivalents." (We might as well interpret any other symptoms or changes as tics or as related to the still unfound "TS gene," as some authored colleagues do. Although this seems to satisfy some who would like a complete explanation for everything, it seems more like spreading a concept to the point where it becomes scientifcally meaningless.)
MYTH: People with TS have a characteristic personality
Thirty to 35 years ago it seemed generally accepted, as part of "psychosomatic medicine," that certain diseases or condtions were associated with a specific type of personality. This idea, attractive to many, has not disappeared yet, though in most instances it has been rejected by good research. This includes the "Type A personality" and peptic ulcer (now thought to be caused by an infection), psoriasis, eczema, epilepsy and ulcerative colitis.
It's worth pointing out that before the mechanism of tuberculosis was known, the same thing was said about that disease. World literature was full of descriptions of the relationship of creativity to TB. Might something like this also be true for TS?
A Final Comment
Diseases that seemed separate have become unified: two examples are scrofula ("the King's evil") and consumption as forms of TB, and shingles as a manifestation of the chicken pox virus. On the other hand, what once seemed unitary may end up split into many related or unrelated disorders. At present we simply do not know enough about the boundaries and overlaps 0f TS, OCD, ADHD, and learning disability (to name a few combinations). Once an inherited disease or disorder is well understood, we then can know who carries it, how often it is expressed, and in what ways. For all of our progress, that is still in the future for TS. In the meantime, the various claims you will hear may be based on biased samples, personal prejudices, or powerful personal experiences, not good science. Although efficiency of communication requires short-cuts in our language, this will continue to create problems if we are not clear about the certainty of our knowledge.
by Roger D. Freeman, MD, Chair, TSFC Professional Advisory Board
Ten years ago most professionals had never heard of TS, or if they had, they would likely have said that they had never actually seen a case. To them this was not surprising, since TS was reputed to be rare. This was IGNORANCE, and we combated it with great success. Now we have another problem as a result of that success: CONFUSION. This affects all of us, professionals, parents and the general public.
At this still rather primitive stage of our knowlege, controversy is to be expected. Although we sometimes forget to do so, what is controversial should be labelled as such. I have included here a few of the areas that need clarification.
FACT: TS is a Fuzzy Concept
For scientific and research purposes we need criteria or definitions, but these do not necessarily coincide with what persons with TS feel they "have." And since we do not know the precise mechanism of TS, or have a test for it, this leaves lots of opportunities for confusion.
Here are some problems:
- Although tics are typically described as "rapid," and "purposeless," some are not.
- The boundary between complex tics and compulsions is not sharp.
- To be officially diagnosed with TS you need to have more than one motor and at least one phonic tic. There is no good indication that there is any difference between those who have TS and those who have only one motor tic and a phonic tic, or have multiple motor tics and no phonic tics. The definition is set by a committee, and has changed over time. Most persons with mild and uncomplicated TS are not diagnosed and do not enter the statistics of any clinic or organization.
- Although tics are said to be worse when under "stress" or tension, why do children and adults automatically show less when in a doctor's office? This is quite unclear.
- The literature repeatedly says that tics "disappear during orgasm." I have been unable to find a single reference to this most intriguing research! (Is it just repeated without evidence?)
FACT: Tic Disorders are Inherited
As mentioned above, the boundaries of what we diagnose as TS are arbitrary. We know that other tic disorders and probably OCD are more common in families with a TS member. Therefore it is not TS (as a "thing") that is inherited, but a tic spectrum disorder, of which what we call "TS" is a relatively uncommon part. If you have TS, the chance of one of your children having a tic spectrum disorder is approximately 50% for males and 30% for females. The chance of having TS could be much less, and if your child does develop TS, it's likely to be simple and mild (since that is more common), rather than extreme. There is some evidence that if there is a tic spectrum disorder on both sides of the family, there is a greater likelihood of more severe symptoms. This area is still very confusing for new parents and for genetic counseling.
MYTH: Coprolalia is necessary for Diagnosis (or is Common)
For those unfamiliar with TS diagnosis, this is one of the worst of the myths. It is of course often the most dramatic symptom that catches the media's attention, but it only occurs in a minority of cases and is often short lived, rather than chronic. This myth may lead to misdiagnosis or delayed diagnosis, as well as prejudice against persons with TS.
Co-mobidity -- What is "Associated" with TS?
Most cases of TS are not clinically identified because they are simple tics and never reach a point where families are looking for a diagnosis. Having more than one problem will increase your chances of going to see a physician and getting a diagnosis. Because clinics will see more cases where more than one problem exists our sample for research purposes will ultimately be "biased" and generally so will any support group. Therefore it is hard to say whether another co-occuring problem or condition truly is more common than would normally be expected. A good example is sleep disorder, reported by several clinics to be more common. Research shows that those in whom it occurs are likely to have TS + AD/HD, not just simple TS. Our clinical data supports this finding. If we had cases of simple TS included in these findings would it still be viewed as common?
There are two other areas that can be mentioned:
MYTH: Anger and Rage are much more common in TS
These words do not reflect a single type of behaviour. The behaviour we label needs to be further delineated as to what precedes and follows the behaviour, how long the build-up takes, the duration of the episode, and what makes it better or worse. (This is the same kind of careful analysis we are expected to do with any symptom.) Although angry episodes can indeed be a major problem for some persons with TS, many children and adults without TS have bad tempers, too.
Claims that this is more common amongst those with TS, or has unique characteristics, should be tempered with caution until better information is available. We are now seeing the ultimate confusion: children or adults referred without any tic history, but whose outbursts of anger are interpreted as "tic equivalents." (We might as well interpret any other symptoms or changes as tics or as related to the still unfound "TS gene," as some authored colleagues do. Although this seems to satisfy some who would like a complete explanation for everything, it seems more like spreading a concept to the point where it becomes scientifcally meaningless.)
MYTH: People with TS have a characteristic personality
Thirty to 35 years ago it seemed generally accepted, as part of "psychosomatic medicine," that certain diseases or condtions were associated with a specific type of personality. This idea, attractive to many, has not disappeared yet, though in most instances it has been rejected by good research. This includes the "Type A personality" and peptic ulcer (now thought to be caused by an infection), psoriasis, eczema, epilepsy and ulcerative colitis.
It's worth pointing out that before the mechanism of tuberculosis was known, the same thing was said about that disease. World literature was full of descriptions of the relationship of creativity to TB. Might something like this also be true for TS?
A Final Comment
Diseases that seemed separate have become unified: two examples are scrofula ("the King's evil") and consumption as forms of TB, and shingles as a manifestation of the chicken pox virus. On the other hand, what once seemed unitary may end up split into many related or unrelated disorders. At present we simply do not know enough about the boundaries and overlaps 0f TS, OCD, ADHD, and learning disability (to name a few combinations). Once an inherited disease or disorder is well understood, we then can know who carries it, how often it is expressed, and in what ways. For all of our progress, that is still in the future for TS. In the meantime, the various claims you will hear may be based on biased samples, personal prejudices, or powerful personal experiences, not good science. Although efficiency of communication requires short-cuts in our language, this will continue to create problems if we are not clear about the certainty of our knowledge.
