Changing the name of Tourette Syndrome

Me during the debate

A little while ago, dr. Kirsten Mueller-Vahl and colleagues published an article about changing the name of Tourette Syndrome. Their reasoning was that there is not, and has never been, a scientific basis to separate Tourette from other tic disorders. And mainly chronic tic disorders. In addition, the word ‘Tourette’ is highly stigmatized, so it was suggested that patients might want to get rid of this word, in order to get rid of the stigma. It was proposed to call Tourette and other tic disorders ‘Tic Spectrum Disorder’. Initially, we didn’t have anything more to go on this proposal than the article. But luckily, at the ESSTS Conference in Hannover in May we had lots of time to talk and debate this proposed name change and what this would entail.

Two questions

Dr. Mueller-Vahl expressed that it was mainly her intention to start a debate. The proposed name of ‘Tic Spectrum Disorder’ was merely an idea, a proposal. Nothing more. She stated that she finds it important to look critically at current society and research and review whether the name Tourette Syndrome is still appropriate. I fully agree with this. During the debate, we found that there were two main questions to be asked:

  1. Is it time to change the name of Tourette Syndrome?
  2. If yes, what should the new name be?

The first question, while being the topic of debate, was not discussed at length. The main reason being that it’s pretty clear that tic disorders are a spectrum. Not just when it comes to tics, but also when it comes to other symptoms. Scientifically, that would give you enough reason to call a chronic tic disorder ‘a mild version of Tourette’. But what is the next step? And what do we want with the word Tourette?

Tourette or not?

There are two topics that come up on Tourette or no Tourette: stigma and the fact that Tourette is more than tics. In the article, it was suggested that it would be good to lose the word ‘Tourette’, because this would remove the stigma, too. However, during the debate, I explained that research suggests that this would not be the case (Galinsky et al 2013). Stigma changes through reappropriation, not through changing the name. This means identifying with the word Tourette, not pushing it away. In the Netherlands, it is normal to call ourselves ‘Touretters’, so this process is already ongoing (this might be different in different countries). This process would be halted by getting rid of the name Tourette. And, the stigma would most likely change to the word ‘tics’, so that wouldn’t be helpful. This means that research suggests that a name change would not solve this problem.

Many, many people with Tourette (and their parents) said that the name ‘tic disorder’ would not cover what Tourette truly is. Tourette is more than tics. Now, this debate is a bit more complicated, because according to the DSM, Tourette is just tics. But we know that’s not the case. And according to research, about 86-90% of people with Tourette have other symptoms. So isn’t it time to change the diagnostic criteria? I think it is, but like I said, that’s a different debate (one I’m very willing to have!).

A good start

We concluded the debate by acknowledging that we still have a long road, and debate, to go before we can make a decision. We need to do more talking, thinking and research. Some aspects have not even been thoroughly discussed, and some of them might even be the most hard aspects of it all! Because, do we want to call it a ‘disorder’? What do we do with people who have a temporary tic disorder? Do we want to call that Tourette as well? And is getting rid of the word Tourette not stigmatizing in itself? When does it become a chronical condition and is there a scientific basis for that? I have opinions on most of these questions, but I don’t want to make this blog ten pages long!

On one thing we all agreed: Tourette might be medical, but changing its name has social consequences for patients. This means that patients need to have a clear, and where possible even decisive voice in this debate. And I think that is a pretty good start.

De meeste volwassenen begrijpen mij niet, maar jij wel.
F. (11 jaar)