1) Vocal tics can be long and complex phrases, they can be in context and they can have a linguistic meaning so sometimes may look purposeful, however they are still completely involuntary. The human brain is an incredibly complex organ, therefore tics can be very complex. If you hear someone yelling a whole phrase that may be in context, please know that this is still a tic and you should trust us as we know what is a tic and what is not. Some of us are wrongly accused of faking our condition as our tics can be extreme, but we shouldn’t be judged like that. It's important to understand the complexity of the condition that these tics are not purposeful.
When I say that tics can be in context, they may occur at good timing or may be situational.
2) We do not choose what we tic, if we could tic non-offensive things instead of having coprolalia, then we would, but unfortunately, we don’t really have a say in what comes out. I describe it like my brain has a 3 year old inside who just wants to mortify me by making me tic whatever I shouldn’t yell in a specific situation.
3) Vocal tics don’t have volume control, people may ask if someone can whisper their tics or do them quietly, but that’s not an option. If in public, we could whisper our tics instead of screaming them then that would be great, but that doesn’t happen as tics are involuntary and we don’t choose the volume. If someone asks us to tic quieter, then we may end up ticcing louder. This is in no way, shape or form related to us being obnoxious, instead it is related to the fact that we are then focusing on the tics more and feeling more self-conscious, and the tics may also do the opposite of what we 'should' do in a situation so if we feel that we are meant to be quiet then the tics may be loud.
4) I know that in the media, the portrayal of Tourette’s mainly focuses on coprolalia (inappropriate tics) but it gives an inaccurate depiction of it. On television it’s often portrayed as ‘funny’ , but in reality, it isn’t as funny as it’s presented as coprolalia and other tics are often isolating and have many negative social implications and we often face harsh judgement, ridicule and discrimination from those who don’t understand these symptoms. Coprolalia needs accurate awareness, despite it only affecting a small percentage of people with Tourette's, it still has a profound impact on the lives of those who experience it.
5) Please don’t get offended at our tics as we cannot control them and they have no intention behind them, they are involuntary and not directed at anyone or anything. Sometimes being met with offense can make us feel guilty for something we can’t help. Understanding is vital and I’d like people to know that we don’t mean what we tic and they don’t reflect our views so please try not to get offended as it isn’t us saying these things and when people are offended by us we can become very upset and withdrawn.
6) We are not thinking what we tic, some of us may sometimes get an uncontrollable thought that comes into our mind before the tic comes out, like an intrusive thought, but it doesn’t reflect our opinions at all. I’ll often be thinking to myself “Don’t tic that, don’t tic that, don’t tic that” and it goes around in my head on a loop and then I’ll unintentionally blurt it out as a tic. As it doesn’t reflect our viewpoints or opinions, it’s not what we are really thinking, it’s more that we may involuntarily tic what we shouldn’t or don’t want to tic in any given situation.
7) Vocal tics have a spectrum of severity, some people may have milder vocal tics and some people may have more severe ones and many people will have a mixture of simple and complex tics. Vocal tics can be anything from tongue clicking, throat clearing, squeaking, syllables or animal sounds to screaming, shouting, saying words, phrases, swearing, singing, stuttering and anything else. Almost anything that the human body can physically do can be a tic so there are never ending possibilities of tic presentation.
8) There is such thing as observational tics where our tics uncontrollably comment on the environment around us. For example, if we see someone with a unique hair colour then we may accidentally point it out and we may involuntarily comment of someone’s weight or appearance, but we do not mean it, it has no intention behind it and it doesn’t reflect what we really think. Our tics are just trying to mortify us. It can seem quite impulsive as it blurts out unwanted phrases in the worst situations. They are not directed at anyone, they are just set off by certain aspects in our surroundings - such as things we see, hear, smell, or feel.
9) Some people wonder whether it’s appropriate to laugh about our vocal tics, for me personally, I don’t mind when people laugh with me about my vocal tics as I acknowledge that they can be funny – I’m not referring to the offensive ones as I would never laugh at those, but if I tic something very random then I’ll usually be the first person to laugh so I don’t mind friends laughing with me and it can reassure me that no offense was taken and it can relieve any tension. There is a difference between laughing AT someone rather than with them, if you are laughing at someone then it can be very upsetting and excluding and can feel like we are being mocked, but when we are all laughing together when you can see that the person with tics is not struggling, then we can see it in a light-hearted way.
10) Some tics can occur once and then never happen again and can take us by surprise, tics are usually said to be repetitive movements and sounds which is true to an extent, but some tics can happen out of the blue and may not have any repetitive nature. This can be the case for some observational tics or random phrases which can be a one off.
11. Sometimes, coprolalia can occur mid sentence and in context. For example, someone may be talking about their cat and may say "My fu**ing cat" when they meant to say "my cat". This can sound like they are saying it naturally as part of the sentence, but it is a tic. People may also add a swear word or insult onto the end of a sentence, for example they may intend to ask someone "How was your day?" but it can come out as "How was your day Bi*ch?" due to having a vocal tic at the end of the question.
12. Tics are not a behavioural problem and should NEVER be punished. You cannot discipline the tics out of someone and those of us with coprolalia (socially inappropriate and obscene tics) likely know that what we are ticcing is not appropriate, but we have no control over it.
13. Tics can sometimes occur in a different tone of voice to how we usually speak. It is common for some people to have a slightly more high-pitched or shrill voice when they tic, but people can and do tic in their normal voice as well.
14. Echolalia is a tic where people may repeat something that they have heard, this can sometimes occur immediately after hearing it. For example, someone's teacher may say something and the individual with tics may involuntarily repeat what their teacher has said, sometimes using an exaggerated accent. This may look like the individual with tics is mimicking the other person, but it is unintentional and is never done to be rude.
15. Our tics can change over time and when we develop a new tic we have no idea how long it is going to last. We have no way to tell whether it is going to last a day or a few years.
16. Sometimes we may laugh about our own vocal tics as we can be surprised by the random and creative phrases we blurt out.
17. Sometimes our vocal tics are more about how a word feels than how it sounds. Our tics sometimes have to satisfy a premonitory urge, which is a physical sensation some people feel before a tic occurs, and to do this the tic may have to feel a certain way when it is done. Some people may have lots of tics that come out with a lot of force, as they need to satisfy the urge to tic. Some people may have tics which focus a lot on one specific sound or syllable. For example, someone may have lots of tics that have a "K" sound in as that is what the brain may involuntarily make someone say to satisfy the premonitory urge.
18. Please do not judge us as a person or make assumptions about our character based on what we tic. The kindest, sweetest, most devoted person could have the most harsh tics towards someone they love (tics can be aimed at certain people but this is not done intentionally and is not within the person's control". Someone with a brilliant work ethic may have very defiant and rebellious tics. Our tics are not a reflection of our character. Get to know us as a person rather than just getting to know the tics.
19. Tics can say other people's names so it can look like someone is directing a tic towards another person even though they don't want to.
20. If we try to suppress tics (hold them in and try to stop them from happening), whether vocal or motor, it can end badly. Tic suppression is NOT something I would recommend as it can lead to an episode of more severe tics later on, known as a rebound. It can also trigger or exacerbate other symptoms such as OCD and rage attacks. The tics just bottle up until they have to explode somewhere and this can be harmful to the individual. The sensation that can also occur before a tic can accumulate when tics are suppressed and this can be extremely uncomfortable. For me, suppressing vocal tics gives me a pressure in my chest and makes it feel like I can't breathe. Tic freely.
21. As well as being part of Tourette Syndrome, Provisional Tic Disorder and Chronic Vocal Tic Disorder, vocal tics can occur as part of PANDAS / PANS.
22. Some people find that vocal tics may be calmed by singing, humming or chewing gum, but remember not to chew gum if you have breathing tics or any issue that could cause you to swallow or breathe in the gum, as that would be very dangerous.
23. Vocal tics are said to include any tic that involves oral movements that create a sound, the windpipe or voice box. Breathing tics, throat clearing and tongue clicking can be seen as vocal tics.
I hope this helps and that you learnt something about tics!