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Why Changing The Name Of Tourette Syndrome Would Be Devastating

Some clinicians are considering renaming Tourette Syndrome. They also considered this 5 years ago despite TS advocates being unhappy with this. Having doctors obsessing over the name is a waste of time and resources, we should be focusing on how to better support people with the condition.


1.Renaming the condition will mean that families with the new diagnosis may struggle to find resources made by people who have lived with Tourette syndrome for longer as the terminology may be different. We often do not get adequate support or information from the doctors so people need to be able to find content created by experienced Touretters.


2. Over the past few decades, the community has worked tirelessly to raise awareness of TS. At age 12 I was afraid to say the word “Tourette” due to the stigma, but I now have no issue with it because of the hard work many advocates have put in to change perceptions of the condition. Changing the name would mean these efforts were all a waste.


3. Tourette’s is much more than tics. Calling it “Primary Persistent Tic Disorder” would ignore the fact that 40% of Touretters have rage attacks, 80% have sensory processing issues, and many of us have Obsessive Compulsive Behaviours and ADHD traits even if we don’t meet full criteria for OCD or ADHD. Calling it Primary Persistent Tic Disorder would ignore all of these other traits that can sometimes impact us more than the tics themselves.


4. Part of the reason doctors wanted to rename it was the stigma, but the stigma is just the idea that Tourette’s is about swearing, which for some of us it actually is. A large proportion of my tics are swearing ones, but I do have many other tics as well. The problem is that renaming the condition just because people don’t want to be associated with those of us with Coprolalia just further ostracises those of us with this complex tic.


5. Tourette’s becomes part of our identity, it becomes part of who we are. A lot of us have started using terms like “Touretter” or “Tourettic” to feel empowered and accept ourselves... if this changes then we may lose these terms that we have become so comfortable with after years of learning to accept ourselves.


6. Renaming the condition would allow parts of it to be redefined, which I think is a terrible idea seeing as many TS specialists don’t properly listen to people who actually have TS, treat suppression like a solution, and are psychologists when TS is a neurological condition. Redefining it could also lead to people’s diagnosis being changed, leading to improper management.


7. A new name could mean that videos, books, blogs, articles, and other resources containing the term “Tourette Syndrome” will one day become obsolete. We need this content to stay current so that people can get information on Tourette Syndrome that is well-established and backed by decades of research and experience.


Doctors considered changing the name years ago but appeared to stop after the TS community were unhappy with it, so why are they trying again?

If they know that many TS advocates oppose a name change, why are they trying again?


To take a survey on the name, the links are below:

Carers of people with TS: https://forms.office.com/e/LcZBYe77su

Healthcare workers: https://buff.ly/48WOlIR


(I didn't make the survey, I am just sharing to amplify and get more voices heard. The survey was made by TS specialists.)



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