Shelby Crockett has been a paralegal for nine years and owns the site How to Become a Paralegal. Her site helps students find the right paralegal school.
Those who have Tourette Syndrome are likely to encounter loads of misinformation and those who don’t understand the disease on a regular basis. What Tourette Syndrome is and is not can be as confusing for both those who live with it as those who do not. To help paint a clearer picture, we have gathered a few myths surrounding TS.
More swearing – It is a common myth that those with TS swear often and uncontrollably. In reality, only a small percentage of those with Tourette’s Syndrome have obscenity specific outbursts. In fact, there is a special name for it: coprolalia.- They are mentally challenged – Tourette Syndrome is not like Down’s Syndrome or cerebral palsy. It is a neurological disorder that is characterized by involuntary movement and speech tics.
- It is extremely rare – It is estimated that every 1 in 100 children suffers from Tourette Syndrome, a higher number than those with autism. Most of them go undiagnosed and misunderstood.
- Tourette Syndrome can be managed with concentration – Because TS stems from a chemical imbalance in the brain, there is no voluntary aspect to it whatsoever. No matter how hard someone with TS concentrates, tics can still come.
- Only caucasians can get Tourette Syndrome – As with most diseases and disorders, anyone from any race is capable of being born with TS.
- TS is debilitating – Most people with Tourette Syndrome can go on to lead rich, fulfilling lives and take part in just about any activity as anyone else, especially if they are cared for properly.
- Tourette Syndrome stems from psychological trauma – This was the prevailing thought when TS first began to get diagnosed about a century ago. Now, sophisticated imaging technology shows us that it is a neurological disorder.
- Those with TS can’t do jobs with fine motor functions – Another false truth, famous Canadian surgeon Dr. Matt Doran was able to do complex procedures even though he had Tourette Syndrome.
- They can’t be athletes – How far can someone with the involuntary tics associated with TS go in the sports world? For Jim Eisenreich, all the way to the World Series of Major League Baseball in 1997.
- It gets worse as you get older – While some neurological disorders get worse with age, it is not generally so with Tourette Syndrome. In fact, many who suffer from it go through the worst during adolescence and can even outgrow their tics in adulthood.
Tourette Syndrome is not like Down’s Syndrome or cerebral palsy. It is a neurological disorder that is characterized by involuntary movement and speech tics. Thanks for educating people on what TS really is and isn’t.
I first presented with my tics in 1986 when I was in sixth grade. We had just moved to Georgia from Pennsylvania. Mom didn’t move down with us originally. Some think it takes an emotional event whatever that may be to trigger the Tourette’s. My dad took me to the ER. They gave me a week’s worth of Valium… They were initially very violent full body tics. The best way I could ever describe the feeling was an “ants in the pants” kind of feeling. Felt like I NEEDED to move or twitch so I did. That was 11-12 yrs old. Now 44, they are much much less severe. I’ve had injuries through sports (volleyball) like a torn meniscus and torn rotator cuff and a herniated disc in my neck NHB (No Holds Barred) training, no fights.. While I’m participating in sports and FOCUSED in something my tics are gone. I can actually go some time without tics until I think in my mind, hmmm, I haven’t ticked in a while… and here they come. Now I tend to mildly irritate these injuries as they are already a source of discomfort and essentially pull on them.. I say all this to say this. I consider my condition as a blessing. One thing that makes my tics worse is stress and lack of sleep. I’m kind of a night owl so…. I learned how to reduce stress! It built my personality in such a way that I don’t stress out over things I can’t control. In today’s world I can’t think of anything more valuable!! Another tip I’d like to mention that I’ve tried and it seems to work. Whenever I feel my tics are getting worse I pick a muscle group, typically my abs to focus on and tighten. Literally hold my stomach taught. It really reduces the desire or need to tic. The positive side effect is that I’m pretty much always working out! No need for that gym membership… Another blessing of this condition is the ability I think it gives me to get ultra focused whatever task I need to complete. One problem is GETTING FOCUSED!! I make it know that people need to stay out of my office. Once concentration is broken it is hard to get back! But when focused, it is laserlike! I’m the chief estimator for a construction company. Attention to detail is my specialty!! I don’t know if this is coherent as I don’t have time to proofread (at my baby girls softball game) but I hope this helps some of those wondering how their child will do with this condition. Love, encouragement, and the right mindset and I think they’ll be fine! BTW I thought the list was pretty spot on.
This is very helpful thank you. I have a child with TS. Trying to research if moving to a different climate would aggregate her TS. Potentially moving from SoCal to a climate extremely hot and humid almost year round.
#10 is WRONG!!
Why do you say that? I’m just. Curious bc I have an 11 year old that has new onset vocal tics and most articles and research I’ve read says that a large percent do outgrow it… I am really hoping that is the Cara
Hi cara, my little 9 year old was recently diagnosed with tic disorder. Her Dr told me that as she gets old it most likely will go away..hpefully it’s true. Can u tell me how ur bby is doing
As someone who was diagnosed with tourettes as a preteen I can personally attest to this. Now at age 26 while my tics are not gone they are much more rare and I have outgrown many of them.
Does anyone have a premonitory phenomena tic? And if so, is there anything to reduce the severity? Mine is driving me crazy! I don’t mind my other tics but this one is so annoying
I would be happy to do so; all I need is the time and presence of mind. ;-)
Well, as always, there is no rush. When you have some time and get into the groove you need, take a stab at it! :)
Re #6: We could have a long conversation about your caveat, “if they are cared for properly,” don’t you think?
I accidentally deleted much of what I was going to say, but I will try to rebuild.
I think your list is an excellent start. It just reminds me of the two-pronged challenge we face when it comes to advocacy. On one hand, we need to educate the people we meet in daily life: No, O doesn’t swear all the time (his mom does, but that’s not TS); no, he’s not “mentally challenged,” even though he still hears the “R-word;” and no, he’s not contagious. May we expand your list to eleven myths?
11) TS is not contagious. TS is a genetic disorder; you cannot catch it by being friends with my son, any more than your blue eyes would turn brown after talking with him.
The other advocacy challenge we face involves dealing with doctors. I have much to say about our close encounters with various members of the medical profession (just not much time right now). We have had many misdiagnoses — a tendency to diagnose the current hot childhood disorder. We have had just as many misfires with doctors who claim to have experience in treating TS. One neurologist wanted to treat “that screaming tic” before we did anything else — and *would not* listen to our attempts to tell him that O was screaming in pain because his arms were trying to dislocate themselves. My friend’s four-year-old saw video of O ticcing and screaming and felt bad because he was in such pain, but the doctor could not see the pain.
We have seen doctors whose information was woefully out of date. Some have prescribed treatments that make my hair stand on end; others refuse to do anything, saying O is making it all up. Very few take the whole patient into consideration, and precious few are open to hearing anything we say. So, how do we as parents, patients and advocates improve communication with and awareness among the doctors?
Sarah, perhaps you could do a blog entry adding in your further thoughts and additional items? That would be great
Re #7: Sadly, now a movement is afoot to reclassify TS as a psychiatric disorder, related to OCD. Speaking as the parent of a young man who has been refused medical help for his now-terrifying tics because they are “all in his head” and he is “just trying to get attention,” I think this is outrageous, at best unhelpful and at worst downright dangerous. This mindset shifts blame, as it were, to the person with TS (and in our case, to his family, too, as we were informed that O tics to get the attention I, his mother who abandoned her career to homeschool him and be with him 24/7, am not giving him. No kidding.).
It is beyond me how, on one hand, we have researchers investigating the genetics of TS — and making progress, while on another hand we have some doctors who are intent on setting the state of care for TS back by decades. The general dearth of treatments and lack of understanding of TS saddens me, but deliberate efforts to undo progress are nothing short of enraging.
I saw that on Wikipedia, it is described as a neuropsychiatric disorder. That is troubling to me as well, because it seems to emphasis an outward cause rather than a neurological one. I have relatives, a husband, and 3 children with TS. I think the one that has TS the worst has had the least exposure to environmental pollutants and the most healthy psychological upbringing of the 3. To use the word “psychiatric” in our culture at all in regards to TS automatically makes people think it is the person’s inability to cope or traumatic upbringing at work. I think it sets us back terribly and I wish that the TSA would advocate against this terminology. Accurate or no, there is a so much stigma attached to it and nothing being done to change the perceptions.