David Baxter PhD
Late Founder
Coping With the Stigma of Tourette?s
The New York Times
March 12, 2010, 11:48 am
Dr. Robert A. King and Dr. James F. Leckman of the Yale School of Medicine recently joined the Consults blog to answer readers? questions about Tourette?s syndrome. Here, Dr. Leckman and Dr. King respond to readers asking about living with the strange movements, tics and vocalizations of Tourette?s, which can be socially difficult and, in some cases, lifelong.
Do You Tell a Teacher About Tourette?s?
Q.Jen from Brookline, Mass., asks:
My daughter started exhibiting tics at age 2 and was diagnosed with Tourrette?s at age 3. Now she?s 5 and will start kindergarten in September. I wrestle with whether to tell her teachers about it right off the bat, or wait and see if it becomes an issue.
Her symptoms, so far, have been mild and not always evident. I would hate for her to be ?labeled? unnecessarily (with whatever negatives come with that), but on the other hand, I feel that not being forthright is dishonest, and could equally be a disservice to my daughter. Any advice from those who have recently BTDT?
A.Dr. King and Dr. Leckman respond:
Tics wax and wane. For some, the tics will subside early in life. For others, the worst-ever tics occur at around 10 years of age or later in life.
Unlike your daughter, some children with Tourette?s who begin school have had bad periods during which the tics are severe. It is likely that such children will have bad periods in the future. If the tics are pronounced enough that a teacher or peers are likely to notice and comment, it is better to be proactive and to be prepared.
Most teachers are understanding, so we generally encourage parents to speak with teachers to let them know that a child has been having some tics and for the teachers to be well informed. The more knowledgeable teachers are, the better. Indeed, the tics at times can be misinterpreted as willful acts to disrupt the classroom. The well-informed teacher can model appropriate responses for his or her class.
If the tics are severe and evident to everyone in the class, it can also be helpful to set aside a day to teach the other students about tics. Your local chapter of the Tourette Syndrome Association can often be helpful in setting this up. This is best done in the elementary grades. These teaching sessions can also help the child to become a ?self-advocate.?
Living a Full Life With Tourette?s
Q.Dr. T from the Northeast asks the Consults blog:
I have had tics since I was 7 or so and was diagnosed with Tourrette?s when I was in graduate school working toward my Ph.D. I have had numerous tics (including vocalizations, etc.) which wax and wane over the years and never have taken any medications.
For the most part the tics are part of who I am and they don?t bother me unless I?m particularly stressed. I am currently a neurobiologist at an Ivy League institution, and my colleagues and students basically accept the tics for what they are, which is part of who I am.
What bothers me about many of the comments here is the emphasis on ?treating? this so-called ?disability,? and looking for all sorts of extraneous causes such as untreated strep infections, vaccines, forceps during childbirth and all other sorts of unsupported and anecdotal claims.
This is a genetic condition, I have a high chance of passing it to my children, and like me, they will learn to live with it if they develop it. It seems like the emphasis on treatment with medications, etc., is more for the benefit of the parents of children with TS, than for the children. I can only see justification for this in particularly severe cases. Anyway, that?s just my opinion.
A.Dr. King and Dr. Leckman respond:
Well said, especially in today?s world, where psychotropic medications are so widely used by so many practitioners. The most important lesson is to help patients as well as their families and peers to see beyond the symptoms and not to let the diagnostic label or the symptoms obscure who the individual is and what his or her talents, values and passions are.
The goal is not to extirpate the tics, but to help someone live a full life, whatever the burden of symptoms may be. Hence the title of the very fine, Emmy-winning Tourette?s Syndrome Association/HBO documentary I Have Tourette?s, but Tourette?s Doesn?t Have Me. This isn?t just a question of mitigating stigmatization by others, but also how an individual thinks about himself.
Learning to live with Tourette?s syndrome can be a challenge, but we encourage the individuals that we work with to become self advocates to help others learn about Tourette?s. We find that educating the families, the child and their teachers (and at times their peers) about the waxing and waning nature of tics and information about the usual natural history is often sufficient without resorting to medication.
We often will emphasize that excitement, stress and fatigue can make the tics worse, whereas engaging in something that you enjoy doing and that requires motor control and focused attention, like playing a musical instrument or going for a run, will make the tics better in the short term.
Using Tourette?s as a ?Jerk Filter?
Q.MRma from San Francisco asks:
Friends and acquaintances have asked me how I managed to work and have any social life (as minimal as it is) while living with Tourette?s. It is a daily struggle. Some people get it and don?t mind and many can?t handle it, even though my symptoms are relatively minor in public (by sheer, tough mind control).
I?ve taken all the medications with poor results and insisted at age 30 to have two experimental cingulotomies (minor brain surgery; frontal lobes). Nothing worked. Now I simply take approximately 20 mg of Valium a day with ibuprofen for the aches and headaches from muscle tics. At age 54, my symptoms have only changed, but not abated.
It?s very interesting to find out who your true friends are when you have this disorder. I consider them more special than myself. I consider anyone with Tourette?s or anyone who hangs with someone who has Tourette?s to be a real hero.
A.Dr. King and Dr. Leckman respond:
One hero is Peter Hollenbeck, who has a lifelong history of Tourette?s. He is a professor of biological sciences at Purdue University and is currently serving as the co-chair of the Scientific Advisory Board of the Tourette Syndrome Association. In line with your experience, Peter used his tics as a ?jerk filter? when he was younger ? by which he meant that how people responded to his having tics was a measure of their character, rather than his.
Despite the efforts of many, the social stigma associated with Tourette?s can be profound. Having friends and family who are willing to stand by you can make a real difference.
When a Co-Worker Has Tourette?s
Q.Carolyn G. from Melville, N.Y., notes:
I have worked with two guys with Tourette?s ? one whose symptoms were very mild, minor noises. The other became a teller in a bank branch. I got to the point where I could stand next to him without jumping when he ?grunted/yelled? or ?jumped?. He was on medication and worse when not on it, but a great guy. He was given a hard time once by a welfare check customer and he pretty much told the customer off, saying, ?at least I have a job.? I thought I was going to have a riot in the branch!
A.Dr. King and Dr. Leckman respond:
It is not easy for folks who live with severe Tourette?s; some of our patients suffer post-traumatic stress disorder because of how badly they have been treated in their everyday lives.
A hazard for some individuals with Tourette?s is that although they may be very insightful and witty, they may feel that they do not have good brakes or an adequate ?filter? on what they say and regret blurting out what others think but don?t say.
The New York Times
March 12, 2010, 11:48 am
Dr. Robert A. King and Dr. James F. Leckman of the Yale School of Medicine recently joined the Consults blog to answer readers? questions about Tourette?s syndrome. Here, Dr. Leckman and Dr. King respond to readers asking about living with the strange movements, tics and vocalizations of Tourette?s, which can be socially difficult and, in some cases, lifelong.
Do You Tell a Teacher About Tourette?s?
Q.Jen from Brookline, Mass., asks:
My daughter started exhibiting tics at age 2 and was diagnosed with Tourrette?s at age 3. Now she?s 5 and will start kindergarten in September. I wrestle with whether to tell her teachers about it right off the bat, or wait and see if it becomes an issue.
Her symptoms, so far, have been mild and not always evident. I would hate for her to be ?labeled? unnecessarily (with whatever negatives come with that), but on the other hand, I feel that not being forthright is dishonest, and could equally be a disservice to my daughter. Any advice from those who have recently BTDT?
A.Dr. King and Dr. Leckman respond:
Tics wax and wane. For some, the tics will subside early in life. For others, the worst-ever tics occur at around 10 years of age or later in life.
Unlike your daughter, some children with Tourette?s who begin school have had bad periods during which the tics are severe. It is likely that such children will have bad periods in the future. If the tics are pronounced enough that a teacher or peers are likely to notice and comment, it is better to be proactive and to be prepared.
Most teachers are understanding, so we generally encourage parents to speak with teachers to let them know that a child has been having some tics and for the teachers to be well informed. The more knowledgeable teachers are, the better. Indeed, the tics at times can be misinterpreted as willful acts to disrupt the classroom. The well-informed teacher can model appropriate responses for his or her class.
If the tics are severe and evident to everyone in the class, it can also be helpful to set aside a day to teach the other students about tics. Your local chapter of the Tourette Syndrome Association can often be helpful in setting this up. This is best done in the elementary grades. These teaching sessions can also help the child to become a ?self-advocate.?
Living a Full Life With Tourette?s
Q.Dr. T from the Northeast asks the Consults blog:
I have had tics since I was 7 or so and was diagnosed with Tourrette?s when I was in graduate school working toward my Ph.D. I have had numerous tics (including vocalizations, etc.) which wax and wane over the years and never have taken any medications.
For the most part the tics are part of who I am and they don?t bother me unless I?m particularly stressed. I am currently a neurobiologist at an Ivy League institution, and my colleagues and students basically accept the tics for what they are, which is part of who I am.
What bothers me about many of the comments here is the emphasis on ?treating? this so-called ?disability,? and looking for all sorts of extraneous causes such as untreated strep infections, vaccines, forceps during childbirth and all other sorts of unsupported and anecdotal claims.
This is a genetic condition, I have a high chance of passing it to my children, and like me, they will learn to live with it if they develop it. It seems like the emphasis on treatment with medications, etc., is more for the benefit of the parents of children with TS, than for the children. I can only see justification for this in particularly severe cases. Anyway, that?s just my opinion.
A.Dr. King and Dr. Leckman respond:
Well said, especially in today?s world, where psychotropic medications are so widely used by so many practitioners. The most important lesson is to help patients as well as their families and peers to see beyond the symptoms and not to let the diagnostic label or the symptoms obscure who the individual is and what his or her talents, values and passions are.
The goal is not to extirpate the tics, but to help someone live a full life, whatever the burden of symptoms may be. Hence the title of the very fine, Emmy-winning Tourette?s Syndrome Association/HBO documentary I Have Tourette?s, but Tourette?s Doesn?t Have Me. This isn?t just a question of mitigating stigmatization by others, but also how an individual thinks about himself.
Learning to live with Tourette?s syndrome can be a challenge, but we encourage the individuals that we work with to become self advocates to help others learn about Tourette?s. We find that educating the families, the child and their teachers (and at times their peers) about the waxing and waning nature of tics and information about the usual natural history is often sufficient without resorting to medication.
We often will emphasize that excitement, stress and fatigue can make the tics worse, whereas engaging in something that you enjoy doing and that requires motor control and focused attention, like playing a musical instrument or going for a run, will make the tics better in the short term.
Using Tourette?s as a ?Jerk Filter?
Q.MRma from San Francisco asks:
Friends and acquaintances have asked me how I managed to work and have any social life (as minimal as it is) while living with Tourette?s. It is a daily struggle. Some people get it and don?t mind and many can?t handle it, even though my symptoms are relatively minor in public (by sheer, tough mind control).
I?ve taken all the medications with poor results and insisted at age 30 to have two experimental cingulotomies (minor brain surgery; frontal lobes). Nothing worked. Now I simply take approximately 20 mg of Valium a day with ibuprofen for the aches and headaches from muscle tics. At age 54, my symptoms have only changed, but not abated.
It?s very interesting to find out who your true friends are when you have this disorder. I consider them more special than myself. I consider anyone with Tourette?s or anyone who hangs with someone who has Tourette?s to be a real hero.
A.Dr. King and Dr. Leckman respond:
One hero is Peter Hollenbeck, who has a lifelong history of Tourette?s. He is a professor of biological sciences at Purdue University and is currently serving as the co-chair of the Scientific Advisory Board of the Tourette Syndrome Association. In line with your experience, Peter used his tics as a ?jerk filter? when he was younger ? by which he meant that how people responded to his having tics was a measure of their character, rather than his.
Despite the efforts of many, the social stigma associated with Tourette?s can be profound. Having friends and family who are willing to stand by you can make a real difference.
When a Co-Worker Has Tourette?s
Q.Carolyn G. from Melville, N.Y., notes:
I have worked with two guys with Tourette?s ? one whose symptoms were very mild, minor noises. The other became a teller in a bank branch. I got to the point where I could stand next to him without jumping when he ?grunted/yelled? or ?jumped?. He was on medication and worse when not on it, but a great guy. He was given a hard time once by a welfare check customer and he pretty much told the customer off, saying, ?at least I have a job.? I thought I was going to have a riot in the branch!
A.Dr. King and Dr. Leckman respond:
It is not easy for folks who live with severe Tourette?s; some of our patients suffer post-traumatic stress disorder because of how badly they have been treated in their everyday lives.
A hazard for some individuals with Tourette?s is that although they may be very insightful and witty, they may feel that they do not have good brakes or an adequate ?filter? on what they say and regret blurting out what others think but don?t say.
