Ticking away

Hannah Wilkinson on a ‘normalising’, psychoeducation approach to Tourette’s Syndrome.

A.B. had first noticed a nose twitch at the age of five. Over the years, she had developed a number of other tics, such as curling her fingers, rolling her ankles, and a swearing tic which sometimes got her into trouble with teachers at school. Shortly after her ninth birthday, A.B was referred into our CAMHS team for assessment of Tourette’s Syndrome.

A.B. was very concerned that there was something ‘wrong’ with her and had been trying her best to suppress her tics. We invited her to an online psychoeducation group for families to learn about Tics/Tourette’s. She was delighted to learn that there were many other young people with similar experiences to herself.

A.B.’s parents supplied her teachers with a list of her current tics and asked them to be consistent in accepting and ignoring them. A.B. then took the step to ‘go public’ and tic openly at school. This prompted a classmate to disclose that he also had tics, and he thanked A.B. for giving him the confidence to tic openly too.

A.B. is a composite case, but typical of the young people I see in my work as an Assistant Psychologist within NHS Child and Adolescent Mental Health Services (CAMHS). Here, I would like to outline our approach to Tourette’s, and how any of you can play your part in that.

A surge in cases
The Covid-19 pandemic has affected us all in some way or another. The National Health Service (NHS) has had to adapt faster than any of us could have imagined in order to reduce face-to-face contact and meet unprecedented demand. This is particularly the case for children and young people: in addition to a general increase in the number and complexity of referrals, our team has seen referrals for tics triple over the past two years.

Tics are involuntary body movements (‘motor tics’) or sounds (‘vocal tics’). Common examples of motor tics include eye blinking, facial twitches, head jerks, and limb movements, with vocal tics often manifesting as animal noises, throat clearing, syllables and words. Tics must be present for a year to receive a formal diagnosis. Tic Disorder is characterised by either motor or vocal tics. Tourette’s Syndrome is characterised by the presence of both motor and vocal tics. Tics frequently develop when children are around 5-6 years old, and increase in number and intensity with the onset of puberty around 9-13 years. By adulthood, almost 50 per cent of individuals will have their tics resolve completely, with the remaining 30-50 per cent showing a marked improvement.

Referrals typically come into our team when children are 9-13 years old which reflects the age at which tics tend to peak. The pandemic appears to have shifted this developmental timeline for some individuals – there is an increasing emergence of later-onset tics, especially in teenage girls. In addition, we have witnessed a spike in sudden tic-like attacks enduring for only a few weeks or months.

The surge in the cases has meant that my team has had to adapt its processes. Families often report being distressed and frightened by their child’s sudden development of tics and do not know how to respond. Children may feel embarrassed and alone. Some GPs and other healthcare professionals also communicate in their referrals a level of uncertainty and concern. Yet tics are generally not a presentation to be anxious about. Tics do not usually confer any harm and are likely to go away by themselves. Rather than ‘pathologising’ them as something medically or psychologically abnormal, we emphasise that tics are remarkably common and encourage children to ‘happily tic away’.

To meet the demand in cases, my colleague Shauna O’Keefe and I co-designed an online psychoeducation group to inform families about tics and teach strategies to manage them. We evaluated this group and had overwhelmingly positive feedback from families. In addition, we co-delivered training to practitioners within our Trust to educate them about how we respond to tics. Anyone can deliver this first-level intervention of psychoeducation. I will summarise the key points of how we can be alongside children with tics and their families.

We can all help
National Institute of Clinical Excellence (NICE) guidelines recommend that psychoeducation is offered to children and young people with tics. This is something that anyone can do. The aim is to teach families about what tics are and the strategies to manage them, whilst reducing any blame, stigma or other negative feelings they may have towards their symptoms.

A helpful first step is to normalise tics and communicate to the child that they are not alone. Estimates suggest that 1 in 100 young people experience tics. Famous celebrities who have experienced tics include Billie Eilish, Dan Aykroyd and Mozart, and there are many other people who have been able to lead meaningful lives in their careers and relationships. Tics are not in themselves harmful and do not indicate any further psychological condition or psychiatric illness.

In normalising tics, it is often helpful to explain their characteristics. This includes their classification into motor and vocal tics and their developmental trajectory. Tics do not occur in a ‘set way’; it is usual for tics to wax and wane. New tics might appear, and old ones disappear, and their intensity can also fluctuate over time. Some situations can make tics more likely to happen. People can be very sensitive to the environment so that certain sounds, words, or sensory stimuli can act as triggers. Tics are often prominent under conditions of tiredness, boredom and anxiety or self-consciousness. They can ‘rebound’ in the evening if children have been suppressing their tics at school. Families are often reassured by the fact that tics tend to completely fade away by adulthood.

Children should be encouraged to feel comfortable about ticking. Whilst tics are not voluntary, they can to an extent be suppressed. However, suppression is not generally recommended because it requires a lot of mental effort. A child won’t engage well in their lessons if all their mental energy is going into holding their tics in. Therefore, strategies should focus on managing tics rather than suppression, for example, by using fiddle toys, chewing gum or doodling. Children can be supported to identify situations where tics happen more so that if, say, loud noises are a trigger, they can wear noise-cancelling headphones or sit further back in assembly.

Parents, teachers and peers thus have a key role in helping a child to feel comfortable about ticking and viewing their tics as normal. Many children worry about how others might perceive them, and as mentioned above, feelings of anxiety and self-consciousness can exacerbate tics. Therefore, negative attention such as telling a child off or laughing at them is strongly discouraged. Positive attention should also be minimised because this can unconsciously reward tics and make them more likely to happen. Instead, tics should be talked about positively and ignored as much as possible when they occur. There are many helpful resources for raising awareness on the Tourettes Action website. This charity has produced leaflets about strategies to manage tics, key insights for teachers, how to have conversations with friends, and assembly presentations for teachers to deliver in school. Tourettes Action also hosts online groups so that families can share their experiences and support each other.

Specialist support
In most cases, encouraging children to be comfortable about ticking openly is the only clinically indicated intervention. However, for some children, their tics can be distressing due to being painful or significantly interfering with school and relationships. It is when tics have a significant impact or cause impairment that we consider specialist support.

In my CAMHS team we offer a specialist intervention called ‘habit-reversal therapy’ (HRT), also known as ‘cognitive behavioural intervention for tics’ (CBiT). For each tic, children learn how to identify a warning signal that the tic is about to happen and then implement a behaviour that actively interferes with their ability to perform the tic. To illustrate, many children experience a ‘funny feeling’ or ‘itch’ or tingling sensation shortly before the onset of a tic. If a child had a tic that was an eye movement to the right, they might be taught to notice any warning signals and then direct their eyes to the left. They would hold this behaviour until the urge to tic passes away. Learning how to identify warning signals and implement a competing response demands a lot of concentration and practice, and so we ask parents to encourage their children through rewards and social support. Other components of HRT include psychoeducation, teaching relaxation strategies, and managing triggers and reinforcers in the environment.

There are no ‘cures’ for tics. Since tics are normal and do not indicate any kind of illness, all interventions focus on management rather than treatment. A number of families come into CAMHS enquiring about medication. Sometimes, GPs and other healthcare workers will request this. It is perhaps due to the fact that tics are not generally harmful that no medications exist specifically for tics. For some people, medications for attention-deficit hyperactive disorder (ADHD) and psychosis have been known to reduce their severity. However, there is no guarantee that this would happen and for some people medication can make tics worse. NICE guidelines state “drug treatment for a tic disorder is reserved for cases where the tics are functionally disabling and non-pharmacological treatments have been ineffective…however, the side effects of such medications can be severe and irreversible” (p.150). In general, medication is not offered by our CAMHS service due to the adverse side-effects, which families tend to agree would not outweigh the impact of the tics.

In our experience, the message of acceptance and normalisation is well received and, where families look for further support, we see a strong preference for HRT over medication. Sometimes, families may request a formal CAMHS diagnosis or have other queries. We would encourage anyone who has concerns to come forward and seek support.

Extra tips
It is worth being mindful that tics can often accompany other conditions including Autism, ADHD, and obsessive-compulsive disorder (OCD). I have observed that the most common overlap is between tics and anxiety. Indeed, a vicious cycle can form where a child worries that they are going to start ticking, and then that worry exacerbates the child’s tics, which in turn heightens the child’s anxiety. For this reason, we teach relaxation strategies. Anxiety is experienced both in the mind and the body, with physical changes including faster breathing, tense muscles, and a quickened heartbeat. Deep breathing techniques and progressive muscle relaxation can help, and guided meditations are available for this on YouTube, and the apps Headspace and Mountain Molehill. Another commonly co-occurring issue is sleep difficulties. Strategies to improve sleep hygiene can be found on the NHS website. We encourage families to talk to their GP if problems persist.

Families are often curious about getting to the root cause of tics. Was it lockdown? Was it anxiety? Is it genetic? It is understandable that people seek to find an explanation and make sense of their child’s tics. Sometimes there can be a sense of blame underlying this conversation. We explain that the cause of tics is not yet known, yet it likely involves a mixture of genetic, environmental, and biological factors. By genetic factors, we recognise that many children may have a family member with tics, suggesting that genes may make some people more susceptible. With regards to environmental factors, these may include stressful life events or triggers like sensory sensitivities. We explain the biological element by referring to ‘leaky signals’ between the parts of the brain that plan movement and the parts that act them out. In this way, instead of hearing the message ‘do not move your arm’, the parts of the brain that act out movements may hear ‘move your arm’. However, we emphasise that none of these factors are wholly responsible – it is a complex combination of all these factors that causes tics and that likely differs for each individual. We tend to shift the conversation away from a search for causes, as in our experience, this is not as useful as discussing strategies to manage tics.

A message of acceptance and support
To summarise, although the sudden development of tics can be surprising and scary, we would like to highlight that tics do not reflect any psychological illness. They are remarkably common, and we would encourage children to feel comfortable ticking openly. For this, the role of parents, teachers and peers is invaluable in providing support and treating tics as the kind of normal behaviour that any child might do. Raising awareness is key to helping people respond appropriately. We would signpost people to the website of Tourettes Action where informative resources can be freely accessed. As per NICE guidance, the first level of intervention should be psychoeducation and normalising tics, and we would like to invite readers to promote this message of acceptance and support.

Hannah Wilkinson
Assistant Psychologist
CAMHS Reading Specialist Community Team/ ROMS & Participation

Acknowledgements
Much of the work described was jointly undertaken with my colleagues Shauna O’Keefe and Amanda (Tendai Chido) Mavunga. I am grateful to both of them and Timothy Rossow for their helpful comments and suggestions.

 

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