I wasn’t diagnosed with Tourette’s Syndrome (TS) until I was 28 – some 22 years ago. A diagnosis is not for everyone, I know, but I ‘needed’ this diagnosis – I needed a ‘label’. It was a relief to hear that the compulsions and involuntary behaviours that had overshadowed my childhood and adolescence had a collective description; I wasn’t some kind of weird oddball or ‘possessed’, I was just a human being with TS.
TS is named after the French doctor George Gilles de la Tourette (right), who first recognised it in 1885. Its causes are not known, and there is no cure, although people can learn ways to manage the condition. It’s thought to be due to a combination of genetic (inherited) and environmental factors, and possibly governed by the action in the brain of the neurotransmitters dopamine and serotonin.
TS manifests as repetitive, involuntary movements and vocalisations called tics. It usually starts during childhood, but the tics and other symptoms often improve after several years and sometimes go away completely in early adulthood. A large number of people who experience TS also experience co-occurring conditions such as attention deficit disorder (ADD), attention deficit hyperactivity disorder (ADHD), obsessive compulsive disorder (OCD), rage/anger and intrusive thoughts.1
I have a mixture of both simple and complex tics (see box). Both variants wax and wane. When they wax, I experience frequent and intense tics; when they wane, they are infrequent and minimal. They have waned more as I have aged, but I still get days/evenings when I’m in a bit of a ‘frenzy’. Some factors trigger this – for me, perhaps ironically, typing is one of those factors.
Before the diagnosis, I didn’t know why I ‘twitched’, moved in peculiar ways and made odd noises. As a child, I compared myself with my peers and noticed their bodies were calm and they didn’t make unusual sounds. The tics drew unwanted attention from adults and teasing and ostracisation from my peers. They also distracted me from learning. I found it difficult to concentrate in class when I was having to put a lot of effort into suppressing the manifestations of the tics so I wouldn’t get noticed, looked at and laughed at.
I believe I also had characteristics of ADD in my childhood (I was never diagnosed with any co-occurring conditions). It was just so difficult to concentrate at times and I was distracted easily (a frequent comment in my school reports). This, alongside TS, contributed to me appearing ‘dull’. I began to feel this and live this. In turn, my feelings of inadequacy grew and grew, causing me to withdraw socially. I developed self-statements like ‘There’s something wrong with me’ and ‘I’m not good enough’. These became ingrained and had an underlying influence with which, to an extent, I still grapple today.
I also have some compulsive behaviours (based around insects, birds and animals generally – I just need to get them to ‘a safe place’). The twisted and macabre intrusive thoughts and images that ‘pop’ into my head from time to time are another co-occurring condition. These can be particularly unpleasant, graphic and disturbing and, for me, centre around the maiming or deaths of immediate family members. I also still get the self-defeating thoughts telling me I’m crap/rubbish, inadequate, ugly, boring/beige/vanilla, useless/worthless, etc, in comparison with my peers – and anyone else, really. Sometimes, to ‘address’ these thought moments, I tap or hit myself on the nose and/or jaw, and this physical ‘feel’ seems enough to negate things and ‘put things right’.
As thoughts are by definition invisible, on the whole no one knows how disturbing and challenging they can be. But this can be burdensome. Some people’s intrusive thoughts are so grotesque that they feel ashamed and/or revolted, which may prevent them from exploration and working with someone to find ways to manage them. Over time, as an adjunct to the tapping/hitting, I have learned to manage the thoughts by not giving them too much meaning or any significance, as that can make them worse. Now, I just observe them from a distance and let them ‘be’.
Personally, I have found the more behavioural-oriented therapies have contributed most to my management of TS over the years. CBT is useful when I go through the self-defeating ‘I’m different’/‘I’m ugly’ beliefs. Exposure and response prevention (ERP) is also a useful way to minimise the impact of intrusive thoughts (and tics too). It does mean ‘sticking with’ the challenging and horrible images, but you develop a kind of tolerance, learning and awareness with practice, and each practice brings a longer duration of resilience and tolerance. Similarly, acceptance commitment therapy (ACT) is also very effective in helping me manage my thoughts. It helps me sit with, accept and ‘observe’ the intrusive thoughts, minimises the anxiety and communicates that they are just thoughts and they cannot cause me harm – or harm anyone else.
A related, but more specific behavioural approach for TS – and other tic conditions generally – is comprehensive behavioural intervention for tics (CBIT). The CBIT approach also includes habit reversal training (HRT).2 This intervention is used to alter/modify an undesirable tic and perhaps, over time, prevent it.
CBIT/HRT is a structured approach. In fact, I think I had developed a very primitive application of its principles early on, when I realised that tics invited undesirable and unwanted attention from others and that I had to change them in order to make myself more acceptable to other people. I learned to disguise them by ‘doing’ something else. It was very hard work, took a long time and is still a work in progress. It wasn’t until 2010 that I learnt that this technique also existed as a formal and structured methodology that helped some people with TS exert a reasonable amount of control over their tics.3
CBIT comprises psycho-education on TS, why tics occur and the prognosis of the condition. It also includes an assessment process and a set of function-based interventions that help the person identify environmental factors (internal and/or external) that might be maintaining and/or exacerbating the tics. You compile a list of all your tics and then focus on one you want to reduce/manage. Then you use HRT to address it. First, you identify (if present) the ‘premonitory urge’ (PU) – the feeling/sensation experienced before the tic that, if brought into awareness, alerts you that the tic is about to follow. Once you have recognised the PU, you apply a ‘competing response’ (CR) – an alternative tic and/or behaviour that ‘competes’ with the undesirable tic. The CR needs to be physically incompatible with the undesirable tic and less socially noticeable and interfering. It also needs to be something you can do in different scenarios without it being noticed, that can be applied for longer than one minute and that needs no additional ‘props’.
So, for example, if the undesirable tic is a foot stamp, you need to identify the initial muscle movement (the PU) of that sequence. It might be raising the leg before stamping, so the CR could be to push the foot (or both feet) firmly into the ground. Controlled breathing could be of benefit here, too. You do this until the PU passes. Repeating this over time helps to reinforce the CR and create a neuro/physical ‘memory’ that will, hopefully, become automatic as time passes, until the tic becomes modified to an acceptable level.
Social support is another important component of the HRT process. A parent or other significant and trusted person can prompt and remind a young person to apply the CR if a target tic is manifesting and they do not recognise the PU or have forgotten to do so.
Progressive muscle relaxation (PMR) has also been found to be beneficial and I believe a mindfulness approach could be helpful too.
TS and counselling
TS is part of me and of course it has a major presence in my day-to-day life and work. I trained integratively in person-centred, CBT and psychodynamic approaches. More recently, I have added ACT to my repertoire. Having TS made me hesitate at first about training to work as a counsellor. When I completed my initial training, I volunteered as a counsellor with Sight Support (now called Sight Cymru), and I did wonder if working with people who were visually impaired and/or blind would be an advantage for a counsellor with TS, as my clients would not be able to see the tics. I questioned my choice of a client group from whom I could ‘hide’ the real me and worried that I was ‘using’ my clients to allow me to fulfil a vocation I had wanted to pursue for many years. However, I quickly came to realise that hiding my tics would be almost impossible as people with a visual impairment are likely to be able to pick up on other, non-visual cues.
With this awareness, and the input of a wise supervisor, I gained confidence in my role. Subsequently, with some experience behind me, I began also to work privately with adults and then with young people in schools, and this latter client group is now my primary focus. I feel confident, able and comfortable to work with a diversity of people who present a diversity of issues.
It’s not the TS people see when they come to me for counselling; they see me – a person, a human being, a counsellor. I don’t deny my TS; it is part of me – I simply allow it appropriate times and places to be free. I see ‘us’ as working together in the counselling room. Of course, TS doesn’t just go away. It’s ‘bubbling’ away all the time, in some form or other, beneath the surface, but I choose to keep it tethered. Sometimes I let a tic out, but I disguise it as a non-extraordinary movement. This might take the form of ‘scrunching’ my toes together or physical shifting in my seat. I might look up at the ceiling and slowly stretch the muscles in my neck if they are feeling ‘tic tingly’. But this rarely happens now.
Suppression is essential for me to work/function in my professional role. In a counselling session, it’s like different parts of my brain are vying for dominance. In the raucous and rampaging red corner, there’s movement and noise. In the cool, blue corner, there’s stillness and calm. Somewhere in between, there’s a ‘third’ function (perhaps the referee) that mediates and enables stillness and calm to ‘win’. (This three-way interaction reminds me somewhat of the battles that take place in Freud’s id, ego and super-ego theory of development). It is tiring and it could be argued that, if I am fighting a constant battle with the insurgence and influence of tics, my concentration on the client, the issue, their body language, emotions and wellbeing as a whole must be compromised. Certainly, the tics are lurking in the background – but I am managing them. My concentration could be compromised if there were other distractions going on, as this impacts on my ability to manage my tics, but these kinds of distractions surely shouldn’t happen in a counselling session anyway! So yes, I am fully present; it’s just another challenge in this sometimes challenging yet rewarding and extraordinary work.
Having TS, and especially when I was younger, certainly had a detrimental impact on my sense of self and wellbeing, in both my internal and external worlds. As time progressed and I was able to become more accepting of ‘me’, I realised that I was actually OK and had something to contribute to this world. Now, I feel honoured that I can help my clients find their own way forward. I also feel that having TS and the experiences, knowledge, learning and understanding that come with it have enabled an awareness, acceptance and ‘growing’ that continue today in my personal life and in my work.
Leigh Hale has worked as a school counsellor for the last seven years. He has a BSc in psychology, which he completed through the Open University. He has taught on counselling courses in Further Education and is about to embark on accreditation. This is an abridged version of a much larger piece of reflective work and he is now in the process of looking for a publisher.
1. For more information about Tourette’s, see Tourettes Action www.tourettes-action.org.uk/7-about-ts.html
2. Azrin NH, Nunn RG. Habit reversal: a method of eliminating nervous habits and tics. Behaviour Research and Therapy 1973; 11(4): 619–628.
3. Woods DW, Piacentini JC, Chang SW et al. Treatments that work. Managing Tourette Syndrome: a behavioural intervention. Adult workbook. Oxford: Oxford University Press; 2008.