September 21 2021
Talking Tourette’s Syndrome
Emma McNally is the parent of a child with Tourette’s. Following her family’s experiences and her research into Tourette’s and existing services in the UK, she is now campaigning to raise awareness about this very misunderstood condition. Here she explains what Tourette’s Syndrome is, what it is like living with the condition and about the campaign.
What is Tourette’s Syndrome?
Tourette’s Syndrome is a complex neurological condition, affecting the brain and nervous system, that there is no cure for. It is characterised by involuntary movements and sounds called tics. These movements or sounds are not only uncontrollable, but they can be repeated, over and over again. Movement tics are called motor tics and sounds are called vocal tics. Contrary to popular belief, only 10% to 20% of people have coprolalia, where people swear and shout obscenities or inappropriate things.
Before a tic is expressed, an individual usually experiences what is called a premonitory urge. A premonitory urge can be explained as a build-up of increasing tension, which gets greater and greater until the tic is released and then it is temporarily relieved.
Motor tics include:
- facial grimicing
- rolling eyes
- sticking tongue out
- kicking legs out
- pulling on clothes
- head jerking
- body extension and twisting
- toe curling
- touching things repeatedly
- dropping to the floor
- thrashing your body about
- twisting your body
- stomach clenching
- breathing in and out repeatedly
Vocal tics can include
- throat clearing
- repeating words or phrases
- change in voice pitch, high or low
- animal sounds
With Tourette’s often comes impulsive tics, these can include things like: running into a road, touching hot things, touching flames, squeezing the contents of bottles, throwing items, ripping up school work, scribbling over school work, etc.
Everyone is different
What we have learnt as a family is that practically anything can be a tic. Tics and the associated symptoms of Tourette’s are different for EVERY person with Tourette’s, no two people with Tourette’s will have exactly the same symptoms.
Tics are uncontrollable but can be influenced by internal and external factors such as stress, fatigue, excitement and the reactions of others to a tic. Tics can change daily, this can cause confusion as people think “you weren’t doing that yesterday” we say Tourette’s likes to keep us on our toes. Tics can also sometimes seem purposeful in nature and mistaken for “naughty” behaviour. Vocal tics may cause someone to shout things out about a persons appearance or make them shout things about a certain environment they are in, so for instance shouting “bomb” when at an airport. This does not mean that the person is thinking those things or wants to say those things. My son often says that he can feel that a vocal tic is coming but he has no idea what is going to be said.
Diagnosing Tourette’s Syndrome
To be diagnosed with Tourette’s in the UK, you need to have at least one vocal tic and multiple motor tics, which have been showing for at least one year. These do not have to be the same tic, as the movements and sounds can change all the time. However, there is no one test for Tourette’s Syndrome. Tests and scans may be done to rule other things out. In the US the criteria are similar, but the tics must also be present before the age of 18.
To get a diagnosis, a GP may refer you to different specialists, such as a neurologist (a brain and nervous system specialist).
Tourette’s is more common than you think
Many people think that Tourette’s is rare. However, it is thought to affect 1 in 100 school aged children with many often going undiagnosed or misdiagnosed!
Around 80% of people with Tourette’s will have other conditions that occur alongside Tourette’s. The most common are Attention Deficit Hyperactivity Disorder (ADHD), Obsessive Compulsive Disorder (OCD) and Autistic Spectrum Disorder (ASD). Sometimes individuals will not meet the criteria to get a diagnosis of these other conditions, but they will almost always have traits of these conditions alongside their Tourette’s.
Living with stigma
Tourette’s Syndrome can attract a lot of attention when tics are expressed in public. Lack of knowledge and understanding means that this attention is often negative and hurtful. We have had lots of people stare at us, ‘tut’ at us, move their children away from us. Children have been scared of the noises made. These things for a parent are heart breaking, it’s like a knife being put into your stomach. We see how much it hurts our kids and we have seen the impact on them. One child we know was an outgoing happy child until her tics began at around 10 years of age. Now 13, she is painfully quiet, shy and anxious.
Lots of people that have Tourette’s hate the attention that it brings and have learnt to suppress it when in public. Then suppressed tics have to come out later, often more painfully. Tourette’s can be an extremely isolating condition. That’s why we are working so hard to raise awareness. If people understood the condition better, maybe life with Tourette’s Syndrome would be just that little bit easier to deal with.
Tourette’s is painful
People with Tourette’s talk about feeling pain daily. Headaches and tiredness are common. This is to do with the repetitive nature of the tics and the strain that ‘ticking’ puts on the body. Suppression of tics is also exhausting and causes a lot of pain. Tics that have been suppressed come out later when home, usually with more ferocity and frequency. This can cause a tic attack.
Tic attacks are tics that continue for hours with no break, they are extremely distressing and exhausting. It’s like running a race and being out of breath and physically exhausted. You want to stop but can’t, so the exhaustion and pain gets worse. Often, after a tic attack, individuals are left exhausted, in pain, with muscle strain and very emotional.
Tics can also cause injuries such as: repetitive strain injuries, cuts and bruises, bleeding toes, bleeding throat, dislocation of joints and even broken bones!
What can be done?
Tourette’s Syndrome is a lifelong condition and remains one of the most complex and misunderstood conditions, even by the medical profession. Many people, including professionals, still believe that you need to swear to be diagnosed with Tourette’s and that it is a behavioural condition. But both these beliefs are incorrect!
There is minimal treatment currently available for Tourette’s, treatments offered can include: medication or CBiT (Comprehensive Behavioural Intervention for Tics). CBiT can help individuals change bothersome tics into a less problematic tic. For example, if a person has a tic that is causing them huge amounts of pain, they are first taught by the therapist to concentrate on the premonitory urge associated with this tic. Then they would be shown a different movement to do in place of the painful tic. It is believed that the pathways in the brain change over time, allowing the tic to become a new movement which is not as troublesome.
Our journey with Tourette’s
My son was diagnosed with Tourette’s Syndrome at the age of 9. Looking back, he had had tics from around the age of 2 or 3 but back then we weren’t aware they were tics. They were small things such as blinking, rubbing his nose, moving his glasses, coughing, pulling on his trousers. He would have one tic at a time that would last a few months or so and then disappear. A month later, a new one would appear. They didn’t seem to bother him and as they came and went and changed, we had thought they were “nervous habits” and nothing to worry about. Over the years, the tics would usually appear at times of stress, usually when starting a new class at school or when returning to school after a holiday.
When my son was almost 9 his tics took on a whole new level. He developed a whole host of new motor and vocal tics, which were all coming together thick and fast. Some of the tics were quite forceful and resembled seizures in nature. We went to our GP and who referred us to a neurologist who gave us the diagnosis of Tourette’s Syndrome.
We initially knew nothing about Tourette’s, we had thought it was characterised by swearing, as is often portrayed this way in the media. But it isn’t just a ‘funny’ condition that causes embarrassment. We have been totally blown away and shocked by what it entails.
Tourette’s can be totally debilitating and can strip an individual of their independence. Things which we had once took for granted suddenly became impossible. Taking showers alone, writing, reading, sleeping, all became very difficult. The amount of pain that Tourette’s causes is unbelievable and the hardest thing as a parent is not being able to stop the pain. Having your child cry and ask for you to make it stop is heart wrenching, the pain worsens and the tics just keep on coming.
Patchy services in the UK
In March 2020 my son’s neurologist retired and this led to us being discharged from the hospital along with many other north west families. At this point I tried to get another neurologist or professional in the North West. I was extremely shocked to find that there were no such professionals available in my local area.
I trawled the internet, contacted helplines, complained to my regional healthcare provider (CCG), MP, hospitals, and joined many Tourette’s support groups asking who other people see. What I found was that certain pockets of the UK had amazing care. Children could get diagnosed, treated and supported for their Tourette’s but in other areas of the country people were fighting to get a diagnosis and ongoing support.
This problem for children getting care for Tourette’s was the same for adults with Tourette’s. Some amazing Tic Clinics exist but unfortunately these clinics only accept local referrals. If you find yourself with no provision locally, your only option is to get a referral to one of the clinics in London such as Great Ormond Street Hospital and St George’s Hospital. This in itself however provides its own set of problems, one being is that they like the referral to be made by the local CAMHS (Child and Adolescent Mental Health Services), as it is CAMHS who are likely to take over your care once the diagnosis is made. However, if CAMHS in your local area does not treat Tourette’s as part of their remit, then you are unable to get a referral to one of these specialist clinics in London. So many are left with no local care and unable to get care further afield.
Many families are often forced to pay privately for a diagnosis but are then often diagnosed and discharged in the same appointment with no ongoing help available.
No guidance for doctors or health providers
In the UK our healthcare standards, pathways and guidelines are established by the National Institute for Health and Care Excellence (NICE). However, there are no NICE Guidelines for Tourette’s, which means there is no guidance for GPs on who they should refer to, and no guidance for local services as to what should be provided for people with Tourette’s. So often they provide nothing!
Sign the petition
This led me to start a campaign to try and improve the services offered. I started a UK petition which my MP, Conor McGinn, is acting on and pushing for a debate in Parliament. Unfortunately, Wales will not be covered by this, a so need their own petition. There is only 1 specialist in the whole of the country, and that person only treat adults! The petition needs 10,000 signatures for the Senedd Cymru (Welsh Parliament) to have a debate around the issue. You can find the Welsh petition here: https://petitions.senedd.wales/petitions/244922. Anyone in the UK is eligible to sign.
Where to find help
For anyone who suspects their child has Tourette’s, my advice would be to firstly go to your GP and ask for a referral to a neurologist. If you are not successful in accessing a diagnosis or care, due to lack of local services, then I would strongly recommend that you write to your healthcare providers, Parent Carer Forums and MP highlighting the issue locally.
Secondly my advice would be to surround yourself with good friends who understand and join a local support group. Local groups offer so much help and understanding. These people understand you, they are fighting the same battle, they get the struggles and they can offer endless advice.If all else fails, you can laugh together.
You can also find information and support from Tourettes Action UK . Tourettes Action UK is a good place to start looking for local support groups. They also run regular online group sessions.
Many of the support groups have their own Facebook group, this group is however the main Tourette’s group in the UK https://www.facebook.com/groups/231699603869788/
I also created this support group that is solely for people struggling to access medical care or a diagnosis in UK https://www.facebook.com/groups/3330496917174429/
If you are reading this from a country outside the UK, please write to us and tell us about Tourette’s where you live, or leave a comment below.