CBIT stands for Comprehensive Behavioral Intervention For Tics and is seen as the first-line intervention in managing Tourette Syndrome.
CBIT works really well and is life-changing for some people with Tourette's, but just like every TS management strategy, different things work for different people.
I was never a really good candidate for CBIT therapy and in my case I’m against it if it contains any push to forcefully suppress tics without reducing the urge in the first place - here’s why.
1 . Most of my tics were one off:
CBIT can help with tic redirection which can be incredibly helpful if you have tics that are repetitive and that cause harm, however, from the age of 14 and up, most of my tics were one off tics that would comment on the environment around me. It is very difficult to redirect when you do not know what tic is coming one minute to the next.
2. My premonitory urges were too strong.
It isn’t really safe to redirect all the time if your premonitory urges are so strong as any redirection isn’t going to be enough to fulfill the urge to tic which then just causes more distress. My premonitory urges were worse than the tics themselves, the sensation was horrific sometimes. Redirecting tics rather than fulfilling the full tic would “tease” the premonitory urge and lead to more distress around the fact that the tic urge couldn’t be fully fulfilled. The tics would just come out worse later on to try and compensate for not being fulfilled before.
3. At the age of 14, I didn’t want to reduce my tics, I just wanted to be accepted as I am.
CBIT will not work if the person does not want to redirect or reduce their tics, and it is completely valid for someone to just want to be themselves and tic freely. It is not a sin to just want to be accepted as you are an there is no moral obligation to try and fit yourself into a neurotypical mould. If people want to use CBIT to improve their quality of life, that’s wonderful. If people want to tic freely to improve their quality of life and stop masking, that is wonderful as well.
4. I wanted to get psychoeducation from people who actually had tics.
There’s something ironic about being told what it’s like to have tics from someone who has never experienced them. I knew people who had been told false information from their “Tourette’s specialists” such as “tics can’t occur during sleep!” (scientific studies and personal experience show that they can) or “writing tics don’t exist” (they do) so I decided that I wanted to be educated on the condition by people who actually had it and knew what it felt like, this is why I went to quite a lot of Tourette’s support groups. It was one of the best things I ever did as I felt so understood for the first time in my life and I learnt management strategies from people who had actually been through the same thing.
5. I refused to take part in any ERP practice as it was encouraging tic suppression.
I knew many people in the Tourette’s community who had awful experiences with the ERP element as they were made to feel like a rebel for ticcing, and who were made worse by the suppression element. I know people whose therapists contacted their schools to make sure they were practicing therapy techniques in school, which made the school an unsafe place to be as they couldn’t just be themselves. Tic suppression was always very harmful for me as the urge to tic would get so extreme that it was physically intolerable. The urge was always worse than the tics themselves and it wasn’t possible for me to “get used to the urge to tic” like some ERP therapists push because I tried that for years in childhood and it only makes things worse. It sends the message that “you deserve to suffer if it means that you look more neurotypical.”
I was more disabled by suppressing my tics than by not suppressing them, as the urge was so bad that it felt like I couldn’t breathe. Lets give some context, it was more comfortable for me to scratch my arms until they bled as a tic than to not do that and stick with the premonitory urge. Sadly, ERP therapists have a history of gaslighting people with Tourette’s by saying “tic suppression isn’t painful” when many say it can be. I know an NHS psychologist who said this and it disgusted me that someone who had never experienced tics was trying to lecture people who actually had tics on what it feels like to have tics. They called us “myth peddling” for talking about our own discomfort.
Thankfully, I now know many CBIT therapists who do not encourage tic suppression. The Tourette CBIT Foundation in their Facebook post talks about how suppression can cause somebody to have trouble focusing. I know CBIT therapists who are now helping their clients overcome automatic tic suppression (a trauma response) and tic freely for the first time.
Despite that many studies state that “tic suppression doesn’t cause a rebound later on”, we have to remember that people with severe tics are usually turned away from studies (such as one of the main ones in the UK studying online behavioral interventions for tics) and therefore study results should not be generalised to everyone with the condition. As well as this, rebounds often occur in the evening after suppressing, and they may not have considered this. It is a significant conflict of interest if these studies were performed by ERP therapists, as it is easy for them to manipulate results to get the findings they want. These “specialists” would say that tics are just worse in certain environments, this kind of attitude is what got my childhood psychiatrist to threaten to put me into a care home so it causes serious trauma.
On a poll I did on people who actually have tics, 96% of people said suppression makes their tics worse. For me personally, no longer suppressing is one of the best things I did as it stopped rebounds. This is why my heart hurts when I see children getting sent to NHS “suppression therapy” here in the UK as it takes many of us in adulthood so long to unlearn suppression.
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