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Tourettes Action

About Tourettes Action

By Helen Eadie, Information Manager, Tourettes Action

Tourettes Action is the leading UK support and research charity for people and families living with Tourette Syndrome. 

Employment and Tourettes

What is Tourette Syndrome?

Tourette Syndrome (TS) is a neurological condition estimated to effect over 300,000 children and adults in the UK.  The main symptoms are physical and vocal tics, which typically develop in childhood.  Tics can be simple such as eye blinking, sniffing and throat clearing; through to complex movements and vocalisations that can, at the extreme end, be incredibly debilitating.  Symptoms also fluctuate across periods of hours, days, weeks, months, even years; and environmental factors such as stress and excitement can also affect frequency and severity of tics.

Up to 85% of people with TS will also experience co-occurring conditions including ADHD, OCD, anxiety and depression.  Tourette Syndrome is complex, and unique to each individual.  What you see on the outside is usually just the tip of the iceberg, with much more happening beneath the surface.

What barriers do people with TS face?

TS is a spectrum disorder, those with mild symptoms may not experience any barriers in life as a direct result of their condition.  However, towards the severe end of the scale, tics and co-occurring conditions can be incredibly challenging and cause difficulties for people physically, mentally, socially, educationally and economically.

Employment and TS

The most overt symptoms of TS are physical and vocal tics, which in themselves can be problematic in a work environment, i.e. tics may affect someone’s ability to carry out a particular task, tics can be a source of pain and discomfort, and because of their fluctuating nature, people can experience good and bad periods with their symptoms.  These kinds of physical disadvantages can limit someone’s employment opportunities, or make long-term employment problematic.

The hidden aspects of TS, apart from co-occurring conditions, tends to be the internal world in which individuals constantly deal with the anxiety and anticipation of how their tics will be received in any given environment.  Having TS can be very stressful, and unfortunately, stress often exacerbates tics.  TS is hugely stigmatised and frequently perceived as funny.  The media sensationalism of a small and uncommon symptom of TS – coprolalia (the use of obscene language) – has somehow given licence for society to reduce this complex condition into entertainment.  Employers and work colleagues can significantly help in de-stigmatising TS and therefore help reduce an individual’s stress about how others see them by informing themselves about what TS is, and not be afraid to speak with the individual about how they can support their needs – because everyone with TS is unique. Communication is key, and the employee with TS should always be involved in discussing any changes or adjustments at work that will better support them.

Tics can be suppressed for a short period, although the ability to manage this varies between individuals.  Having adjustments in the workplace such as regular breaks can support someone who is self-managing their tics, as it gives opportunities to tic, rest and recalibrate.

 Looking on the flip side – the advantages of being Neurodiverse

Neurodiversity refers to differences in people’s skills and abilities and encompasses a range of conditions including Tourette Syndrome.  For example, it is known that people with TS show an ability to ‘hyper-focus’, but many may find auditory processing difficult.  Whilst we all have our own strengths and weaknesses, for some people the difference between them is significant. As an employer or colleague you can apply relevant psychological theory, evidence and practice to design interventions that work with human behaviour, not against it, and create an inclusive working environment that works for all.

 

Further information can be found at:

https://www.tourettes-action.org.uk/storage/downloads/1522231534_Factsheet—Guidance-on-employment-for-people-with-TS.pdf

https://www.tourettes-action.org.uk/84-advice-for-employers.html