Last night we were subjected to Scarlett Moffatts Documentary ‘Britain’s Rise in Tourette’s’, which shared misinformation; portrayed amazing individuals in a way they had limited control over (they were not shown a preview), it was completely hypercritical by questioning if social media influencers were part of the rise in tic like symptoms by glamourising their tics as funny, a joke and even enjoyable to some.
This documentary wasn’t even about Tourette’s really, there was no education on the different disorders mentioned, and has put the fear of God into people about it being contagious!
Now, this article isn’t for me to rant about my thoughts and views on the documentary so that’s all I will say on it, but I would like to take this opportunity to raise some actual awareness, I hope.
It’s no secret that since the pandemic, there has been an increase in both neurological and psychological conditions worldwide, but an area that has taken the spotlight over this time has been the increase of tics and tic-like behaviours. Newspapers, tv programmes, and even medical professionals are sharing their thoughts and concerns as to this somewhat secondary pandemic in the tic community.
There have been theories thrown around about hysteria, catching tics from videos on social media, covid causing this influx, and even discussions around if Tourettes has become contagious. However, I’m not here today to write about the ‘what’s and why’s’ instead I want to discuss what we do about the ‘now’s.
We are two years on, the numbers keep on rising, and I almost feel like there is a third pandemic upon us! This is the pandemic of adults and children being wrongly diagnosed, being misinformed, and therefore not getting the right support or treatment.
I read comments daily on social posts of how they or their child has been diagnosed with Tourette’s Syndrome, but then go on to list their symptoms and they are not a part of this condition at all.
Now you may be thinking, why does it matter what diagnosis is given if they are getting support or some answers for their tics.
So, what if I explain it to you like this, you have a TV at home and it’s been glitching for a while now, you’ve been trying to work out why for weeks, maybe even months. You’ve done some research and feel like you have found the cause. You find an IT tech who specialises in this and book an appointment. At the appointment, the IT tech listens to what you have said is wrong, and says “ah yes, this sounds like it’s because is an issue in the monitor, you need to go and learn about this issue and then you can manage it by following these instructions”.
We all know that we would indeed not be able to “fix” the TV if the problem isn’t actually part of the monitor. In fact, if we started following the wrong instructions, we could even worsen the issues within the TV.
Well, this is the exact same as being given the wrong tic-related diagnoses, and we can make matters worse if we do not understand what is actually going on, because of this, it’s imperative that the correct information is being shared across social media, documentary’s and even from medical professionals to.
It is important before you read on that you know; it is possible to have both Tourette’s and a co-occurring condition that can also cause tic-like symptoms too. So, if you have been given a Tourette’s diagnosis this isn’t necessarily wrong but may not be the full picture.
So, let’s firstly look at some of the common symptoms that have been on the rise in the tic community and if they are part of Tourette’s or not.
Due to misinformation and even wrong diagnoses being given, there is a lot of confusion on what is what, when it comes to tic disorders.
A few days ago, after viewing even more posts on social forums expressing a new Tourette’s diagnosis but with non-Tourettic symptoms, I wanted to do some research and ask on my own social media platform if my followers believed these symptoms were part of Tourettes or not.
As you can see, nearly double of my followers who replied are under the impression that these symptoms are part of Tourette’s Syndrome, either due to being diagnosed with Tourettes, reading online, or being advised wrongly by medical professionals.
I can confirm these symptoms are not part of Tourette Syndrome, but part of a separate disorder.
Let’s explore what is what!
Tourette syndrome starts in childhood and first tics are commonly observed between the ages of four and 10, however can be present from toddlers upwards. Tourette syndrome is more prevalent in boys and usually starts with a simple tic in the upper body such as the face, neck, or shoulders. To receive a diagnosis of Tourette syndrome you must have motor and vocal tics that have been present for more than one year. There is usually a genetic link, and the most common co- occurring conditions are ADHD and OCD. The frequency and severity of the tics have no bearing on the diagnosis.
Tourettic tics are managed with a combination of behavioural therapy and medication if needed.
Functional tics are more commonly seen in teens and adults, functional tics are more prevalent in girls and often start suddenly and build quickly. The most common co-occurring conditions are anxiety and depression. Often those with functional tics, will also experience limb locking, paralysis, non-epileptic seizures, dropping/fainting episodes, chronic pain, and fatigue.
Management for functional symptoms include a holistic approach to support the individual with identifying triggers, managing trauma, and supporting underlying mental health conditions.
PANS and PANDAS are both conditions that are triggered by inflammation in the brain caused by infection such as streptococcus. symptoms start in children, suddenly and quickly, so much so often parents can give a specific date as to when symptoms began.
Common symptoms can look very much like those described in the functional symptom list above. Treatment for PANS/PANDAS can include antibiotics and anti-inflammatory use.
It's important that all possible conditions are explored especially when experiencing a sudden onset of symptoms. Please also be mindful that you could have longstanding tics (Tourette’s), and then experience a dramatic increase in symptoms that may look and feel as though they are part of your long-term tic disorder but are in fact the onset of one of these separate conditions.
I went on to ask my followers a further question about the symptoms discussed above, to explore the variations of diagnoses being given to these same symptoms.
It’s quite astonishing that 29 individuals with the same symptoms can have such a varied ‘label’ 3 were diagnosed with a tic disorder, 11 with a tourettes diagnosis, only 5 with functional disorder, 3 with PANDAS and 7 with no diagnosis at all.
Now what are you supposed to do with this information, when we are at crisis point when it comes to the support and services available too are tic community.
The reality is that accessing assessments, diagnosis, treatment, and support, comes down to where you live. You may have a lucky postcode where you are in fact able to access medical professionals, however your postcode may not be lucky enough to be able to access medical professionals who understand ALL tic disorders and can diagnose correctly.
At this point I would usually recommend that families access private clinicians, however it seems that in some cases wrong diagnosis are being given here too, therefore rightly or wrongly it's important that us as individuals and parents, educate ourselves to a point that we can at least begin to follow the right path in supporting our family member appropriately whilst we push to access confident tic specialist professionals.
I have created (updated) a checklist to help you explore Tourette’s Syndrome further which can be found here. Once completed, you are more than welcome to email a copy to email@example.com to receive feedback.
Remember, It IS important to have the correct diagnosis, to be able to access the correct support and intervention so please don't be afraid to ask questions, even if they disregard your query’s.
Remember Educate yourself enough to feel Empowered, so you can Advocate for you/ your child.
Sarah Sharp MSc
CEO Tictock Therapy