People with Tourette Syndrome (TS) seem to have one of the most stigmatised health conditions; it’s hard to think of another health condition which seems ‘fair game’ to be made fun of. In the public realm, little is known about the facts of TS. People often base their opinions on what they’ve seen in TV programmes, which often helps perpetuate the myths. Especially the persistent myth that all people with TS swear.
TS is neurological condition and is one of a number of tic disorders. Research has suggested that up to 85% of patients with TS also have associated psychiatric comorbidities, such as attention deficit hyperactivity disorder (ADHD) and obsessive compulsive disorder (OCD).1 Also commonly occurring alongside the tics are anxiety and depression, many of which are being exacerbated in the current global health crisis.2
As common as autism, it is estimated that TS has about 1% prevalence. That means one in 100 school children will have TS and a far higher number will have tics in their childhood, perhaps leading to another diagnosis of either provisional or chronic tic disorder (CTD). Tics are the defining factors of these conditions, involuntary movements and sounds. Only 15-20% of those with TS will have coprolalia (the swearing tic), far less than represented on TV.
People with TS are sometimes laughed at, excluded or made to leave public spaces, judged or verbally and physically attacked in public. All of which can have an adverse effect on the mental health people with tic disorders such as TS. Patients with TS are already facing massive inequalities in terms of just their journey through diagnosis and treatment. The great patchiness in terms of services across the UK mean many people may spend months or even years before they get a diagnosis and an offer of treatment (if it’s available).
Already facing stark mental health inequalities before the pandemic, we know from recent research surveys that patients have noticed their tics worsening since the outbreak of the pandemic.3,4 How are these individuals and families affected by tic disorders faring during these current times? We just don’t know.
Research has found that having TS or chronic tic disorder was associated with substantial risk of suicide.5 The figure from the research was that people with TD/CTD were four times more likely to commit suicide. The researchers said: “Suicidal behavior should be monitored in these patients, particularly in those with persistent tics, history of suicide attempts, and psychiatric comorbidities. Preventive and intervention strategies aimed to reduce the suicidal risk in this group are warranted.”
Some authors2 suggest that Covid-19 will might increase mental health difficulties disproportionately in people with tic disorders. In addition, some people with tic disorders also have vocal tics, which look very similar to some Covid-19 symptoms, for example a dry cough, throat clearing or sniffing. Having TS and being in public will exacerbate anxiety and will no doubt also increase tics and other ‘non-obscene socially inappropriate symptoms’ which can accompany TS.
Especially difficult during the current health pandemic are more complex tics like spitting, inappropriate touching of others and yelling out sentences like “I have Covid-19”. This not only puts people with tic disorders at a disadvantage by drawing unwanted attention to themselves but also in terms of finding themselves facing stigma, anxiety and harassment in public spaces, where people do not understand that these tics are not something that can be controlled.
The challenges of lockdown, may disproportionately affect neurodiverse people, including the issue of uncertainty and the interruption to their routines as well as social isolation and lack of access to services and or care provision which have been reduced or suspended altogether.
Although in some areas of the UK restrictions have been eased, in other areas they are being increased again and this continuing uncertainty can increase stress as well as increasing tics, both of which are detrimental for mental health. For some with tic disorders, the return to work or school may mean raised anxiety as having to use public transport and return to a work or school environment while keeping inappropriate tics and OCD under control will be very challenging. Especially for those who are stigmatised or bullied at school or work because of their differences such as tics – it can also be very stressful returning to that environment.
Between April and May 2020, a survey was conducted looking at the driving experiences of people with TS.6 Participants were asked ‘Do you feel that your tics have worsened since the start of the coronavirus pandemic?’ The researchers reported that a “substantial proportion of patients with TS/CTD have perceived a worsening of their tics since the outbreak of the pandemic. These individuals may need additional support during these challenging times’” It is unlikely that these patients will have received any additional support since the pandemic began.
From one point of view, lockdown may have provided a welcome relief for some patients to escape from their structured learning or working environments and reduced their stress, left to tic freely at home. Lastly, as for some people with autism, there are people with tic disorders who also experience sensory sensitivity and may not be able to wear face coverings again perhaps drawing unwanted and maybe even hostile attention to themselves in public spaces.
Services and care delivery, as for many other patients in the healthcare system, will no doubt have changed for patients with tic disorders since the start of the pandemic. Those who are able to access medication and behavioural therapy to help manage their tics may now be more likely to have remote appointments. There has long been the argument that by delivering behavioural therapy for tics online many more people will be able to access it as a treatment option.
As already said the patchiness of services in the UK and the remoteness perhaps being a barrier to accessing telemedicine for tics hopefully will reduce as more online behavioural therapy is offered. Previous research has shown that online treatment has equal results, good acceptability and no differences in therapeutic alliance as compared to face-to-face treatment.7,8 However, there still exists a great shortage of trained health professionals who can deliver online or face-to-face therapy for tics and more training is needed.9
We await the results from research carried out before the pandemic, an Online Remote Behavioural Treatment for Tics study (‘ORBIT’ for short) funded by the NIHR Health Technology Assessment.10 This project involves working with young people and their families to test out two new online behavioural treatments for tics and TS. It will be interesting to hear the views of therapists and patients alike as to whether they can both effectively engage with it.11
The pre-pandemic service levels for people with tic disorders and TS was already insufficient and patchy – it certainly will not be enough to cope with the rising demand of people awaiting diagnosis and treatment and the tide of mental health difficulties which will be coming.
There is an unrecognised mental health crisis facing people, especially those most vulnerable in terms of having a neuropsychiatric condition such as a tic disorder like TS – it could be avoidable. Inequalities will be a major influence in how resilient people have the potential to be. Succinctly put by Cynthia Enloe, “We aren’t all in this together. We’re in the same rough seas, but we’re in very different boats. And some of those boats are very leaky. And some of those boats were never given oars. And some of those boats have high-powered motors on them. We are not all in the same boat.”
A learned colleague and neurologist I know has remained optimistic that something positive can come from such difficult times. In terms of supporting neurodiverse populations and the charities, associations and individuals trying to help them, perhaps members of the public will find more time to volunteer or just start volunteering? The issue of resilience, learning from those dealing well with anxiety and structuring daily life in a way that might be applicable post-Covid-19 are some of the strands of hope we can build and help shine a light on for those vulnerable communities.
We’ve heard it said already in regards to the pandemic, can we view it as a chance for change, as an opportunity for those more vulnerable to be included in the discussion rather than left out.
Dr Seonaid Anderson is a chartered psychologist and freelance neurodiversity consultant with many years experience in neurodevelopmental disorders. Dr Anderson organises behavioural therapy training for clinicians and therapists for tics and Tourette Syndrome. www.neuro-diverse.org Twitter: @Seonaidanderso2
Dr Jolande van de Griendt is a registered health psychologist/ cognitive behavioural therapist, treating children and adults with tic disorders and Tourette syndrome. www.bt-tics.com
