Understanding Tics & Tourette's

Understanding Tics & Tourette's

What is a tic? A tic is defined by a sudden, rapid, reoccurring, involuntary, non-rhythmic, movement or vocalisation.

Examples of tics: Motor: Blinking, arm/ leg movements, eye rolling, facial grimacing, should shrugging, tummy tensing, jerking of the head or other limbs, touching ‘things’ Vocal: Grunting, throat clearing, whistling, coughing, clicking, sounds including animal sounds, words and phrases. See a more comprehensive list of tics here Try our Tourette checklist here

Despite the diagnostic criteria of tics only exploring motor and vocal tics, it is important you know that cognitive tics (also known as mental tics, thoughts on a loop) are also just as common. Those with tics often have a sensation that occurs just before the tic does, this is called a premonitory urge, it is essentially an alert to an oncoming tic. Some individuals state that they do not experience this, some say it’s not a feeling and more of a thought and some even say that the premonitory sensation is more problematic than the tic itself. Having tics does not mean you have Tourette’s, there are multiple causes for tics and 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, 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.

Introduction into different Tic Disorders:

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 those Assigned Male at Birth (AMAB) 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. (We will explore this in more detail below). 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.

Chronic (persistent) Tic Disorder is very much the same presentation as Tourette; however, the difference is that you would only be experiencing motor OR vocal tics, you wouldn’t have both. But just like Tourette Syndrome you would have had these child onset tics, for more than one year.

Transient (provisional) Tic Disorder is when you experience tics in childhood, for a short period of time, this could be a few weeks or months but always under 365 days. These could be motor and/or vocal.

Functional Tic Disorder is more prevalent in teens and adults (sometimes in younger children) functional tics are more common in those Assigned Female at Birth (AFAB). They come on very suddenly, are extremely suggestible and distractable and often appear during/ after period of high stress or trauma. Learn more on Functional tics here

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. Learn more on PANS/PANDAS here

Below is a table to help separate them a little further.

Tic Myths: o Tourette syndrome is a condition of swearing o Severity of tics determines a tic diagnosis o It looks like tourettes, so must be tourettes o A combination of motor and vocal tics is always due to Tourette’s

Why is a diagnosis of Tourette's (TS) challenged so much still in society today? The truth is, it all comes down to a lack of education around Tourette's, that said, despite others level of education, no one has the right to challenge someone else’s diagnosis! It's not their fault, Tourette's has been misrepresented in the media since before I was born and many people learn basic education from shows and news articles about different conditions, so if all they are ever shown is individuals swearing, being inappropriate and presenting with big dramatic movements, it’s hardly surprising that they're confused when the person in front of them with a Tourette's diagnosis isn't presenting in that way. The reality is, Tourette's is neurological, often invisible condition, therefore, unless pointed out to others, can often go unnoticed by those around you.

Despite often unobserved tics, they suffer pain, muscle soreness, throat infections, headaches, embarrassment, low self-esteem and the list goes on. So, education is vital to those around them to ensure they're supported despite not presenting with a condition based on how the media portrays it.

Those of you who have worked with me in therapy or have attended Tictock Therapy's workshops, will have heard me discuss the importance of educating your circle as a bare minimum, but those of you who haven't heard of it before, what do I mean? Educating your circle means just that. The more open you're about Tourette's and how it impacts you personally to those you see often, is one of the easiest ways to educate the people around you. We must remember that Tourette's is a spectrum, therefore it impacts everyone differently, and this is why it's so important to be open with how TS is for you. The only way for us to make a change is for more of us to share our personal stories on how having Tourette's doesn't mean you swear lots and how having Tourette's is sometimes unnoticed to others but can be a life debilitating condition.

Tip of the iceberg

Hands up if you have heard, or seen an image that states tics are the tip of the iceberg? This is information commonly known within the tic community, the reason for this is because over 90% of those with tics also experience symptoms of other conditions to. (This doesn’t always mean that you or your child will go on to have dual diagnosis’s) See more on common co-occurring symptoms here

The importance of knowing the cause of tics: I read comments daily on social posts of how they or their child have been diagnosed with Tourette Syndrome, but then go on to state they’ve only ticced for 4 months, or they’ve experienced a sudden onset as an adult, or 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. The reason it matters comes down to understanding, education, support and most importantly what intervention is used. For example, by treating functional tics, as Tourettic tics could actually make them worse, or by treating PANDAS tics with medication for Tourettic tics, is unlikely you will see any improvement at all. It’s important to know that 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.

Diagnostic Criteria’s

· To be diagnosed with Tourette’s, a person must: -have two or more motor tics and at least one vocal tic, although they might not always happen at the same time. -have had tics for at least a year. The tics can occur many times a day (usually in bouts) nearly every day, or off and on. -have tics that begin before age 18 years. -have symptoms that are not due to taking medicine or other drugs or due to having another medical condition (for example, seizures, Huntington disease, or post viral encephalitis). (www.CDC.gov)

· To be diagnosed with a functional movement disorder, a person is likely to of experienced, o Abrupt onset o History of a precipitating event o Fast progression to maximum symptom severity and disability o Movement abnormality that is incongruent with organic disease (e.g., bizarre, multiple, or difficult to classify) o Inconsistency over time with variable amplitude, frequency, or distribution of the movement o Ability to trigger or relieve the movement with unusual or non-physiologic intervention (e.g., trigger points on the body, application of a tuning fork) o Decreased movement of the affected body part with distraction o Increased movement of the affected body part during observation or examination o Entrainment of movement (e.g., tremor) to the frequency of repetitive movements o Coactivation sign of antagonist muscles (see 'Functional tremor' below and 'Electrodiagnostic testing' below) o Deliberate slowness of movement o Association with false (or "give-way") weakness, sensory loss, and pain o Functional disability out of proportion to exam findings o Unresponsiveness to drugs for organic movement disorders o Responsiveness to placebo drugs and suggestion Functional tics, sometimes called Functional movements are clinical syndromes defined by the occurrence of abnormal involuntary movements that are incongruent with a known neurologic cause and are significantly improved on neurologic exam with distraction or nonphysiologic manoeuvres FMD information taken from (https://www.uptodate.com/contents/functional-movement-disorders)

· To be diagnosed with PANDAS, PANDAS is a clinical diagnosis based on 5 distinct criteria as developed by the NIMH and listed below. Currently there are no definitive diagnostic laboratory tests for PANDAS, but the Cunningham Panel™ is the first and only test that was developed specifically as an aid to doctors in making their diagnosis. o Presence of clinically significant obsessions, compulsions and/or tics o Unusually abrupt onset of symptoms or a relapsing-remitting course of symptom severity o Pre-pubertal onset. Symptoms of the disorder first become evident between 3 years of age and puberty o Association with Group A Streptococcal (GAS) infection. Note: In PANDAS, GAS infections may be present without apparent pharyngitis (i.e., no complaints of a sore throat) o Association with other neuropsychiatric symptoms The most common accompanying symptoms listed by the NIMH include: o Severe separation anxiety o Generalised anxiety o Motoric hyperactivity, abnormal movements, and a sense of restlessness o Sensory abnormalities (sensitivity to light or sounds), distortions of visual perceptions, and occasionally, visual or auditory hallucinations o Difficulties concentrating, and loss of academic abilities, particularly in math and visual-spatial areas o Increased urinary frequency, or sense of urgency and/or a new onset of bed-wetting o Irritability (sometimes with aggression) and emotional lability. Abrupt onset of depression can also occur, with thoughts about suicide o Developmental regression, including temper tantrums, “baby talk” and handwriting deterioration o Parents can usually remember the day their child’s behaviour changed. PANS and PANDAS is characterized by an abrupt onset of obsessive-compulsive disorders and/or tics. PANDAS information taken from ( https://www.moleculeralabs.com/pandas-diagnostic-criteria

Moving Forward – Assessments and Diagnosis

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. Understanding tics and their causes is vital, as tics often look the same but can be caused for various reasons, and the treatment, management pathways and outcomes differ greatly. If you feel that you or your child does not fit the diagnostic criteria, of a given diagnosis, challenge them! Ask why they have come to this conclusion. If you’re still not satisfied, you have a right to request to be referred to a neurologist or tic specialist, you have the right for a second opinion, you have the right to challenge this. If you or your child have had a sudden onset of tics, with no previous history of tics, no family link to tics, and only been ticcing for a handful of weeks or months, you DO NOT fit the criteria of Tourette's syndrome.

Moving Forward – Support Available

Services Not everyone needs or wants a diagnosis, but still require to be understood and supported. These links can help with knowing what support and or services are available to you from Tictock Therapy. For our Resources Hub clink here For Teachers click here For our Tourette’s Checklist click here For our Workshops and Events click here For our Legal Support click here For our CPD accredited training for professionals, schools and organisations click here For more information on therapy and coaching services click here

Moving Forward – Supporting a loved one

Firstly, let’s begin by looking at how many times have you either been told, or read that you’re to ignore your child’s tics? This advice can often be confusing, and leaves parents lost on how best to support their child. So, what is actually meant by ‘ignoring’ tics? In short what this means is, ‘not to give attention’ to tics. The reality is, it's almost impossible to be able to support someone both mentally and/ or emotionally if we pretend that their symptoms do not exist. I have had this explained to me from both adults and children with tic disorders as them feeling like ‘the elephant in the room’. Now there is a huge amount of anecdotal evidence that both children and adults feel that the tics themselves, when ticcing around others, isn't always the problem, but in fact the unpredictability of other’s reactions, and not feeling confident in managing potential questions and stares, is what drives their anxiety around ticcing in public, especially when everyone around them acts like nothing has happened without a conversation of what tics are, and how to react to them. So how do we take on the advice from medical professionals and written literature, with regards to ignoring tics but also be there to support our children, by listening, learning, and advocating for them? So as mentioned before what is meant by ignoring tics, is do not give tics attention. So how do we do this, and build our child’s confidence? The most important thing we must do is sit our child down and explain what tics are, give them some child friendly education about how tics and Tourette’s can manifest in individuals, this is both for their own understanding, and to ensure that they can advocate for themselves if they ever need to. We then explain how attention can increase tics so this means that by us as parents instigating conversation about tics, commenting on their tics, asking if they’re OK because of a tic that just happened, making a fuss about their tics, treating them differently because of their tics, and so on, can actually reinforce the tic cycle and increase the likelihood of them happening again, therefore moving forward you are no longer going to bring any form of attention to their tics, because you care. it's important that your child understands that you are doing this because you care and not for any other reason. We do not want our child to think we are ignoring ‘them’ but simply not giving their tics attention.

The next thing we must do, is let our child know that this does not mean that tics cannot be spoken about, and that we encourage them to come to you to discuss their tics, how they are feeling and any support they may need as much as they would like to. Talking about tics should not be a taboo subject and can be spoken about every day if your child wishes. We need to create an environment where discussing tics is no different to discussing a headache, or how their day was at school.

Secondly, let’s think about how you can support your loved one, without them directly focusing on their tics. One of the easiest ways to support someone, is by observing their tic frequency and their environment. By learning the common triggers and or reinforcers of their tics, you can make changes to their environment to help low tic frequency. You can learn more on how to do this at one of our regular ‘Understanding Tourette’s’ workshops click here to see the next date.

It's also important that we encourage our loved one to ‘do’ the activities and tasks they desire and that they understand they shouldn’t avoid anything because of their tics. In fact, by allowing a loved one to avoid tasks or activities every time their tics increase, there is a high chance of this reinforcing the likelihood of tics occurring more during that ‘event’ in the future.

To learn more please visit our workshop and events page here

Written by Sarah Sharp CEO & Founder of Tictock Therapy CIC and Tictock Therapy & Coaching Ltd