Tourette’s Syndrome Overview

Tourette’s syndrome is a condition which causes the person affected to make involuntary movements and sounds, known as ‘tics’. Tourette’s syndrome usually develops in childhood and although there is no cure, it often improves within a few years of treatment, if not disappearing completely. Tourette’s is estimated to affect up to 300,000 people in the UK.

What are the signs and symptoms of Tourette’s syndrome?

Symptoms usually develop in children between the ages of 5 and 9 and sometimes occur in conjunction with other conditions such as attention deficit hyperactivity disorder (ADHD) and obsessive compulsive disorder (OCD). Symptoms of Tourette’s syndrome can include movement-related tics, such as:

  • Blinking and rolling of the eyes
  • Jerking of the head and limbs
  • Grimacing 
  • Jumping or twirling 
  • Shrugging the shoulders
  • Touching objects and other people

And speech or sound-related tics, including:

  • Grunting
  • Whistling
  • Coughing
  • Clicking the tongue
  • Making animal noises
  • Saying random words and phrases
  • Repeating words and phrases, including swear words.

How does Tourette’s syndrome get diagnosed and treated?

Currently, there is no cure for Tourette’s syndrome, but there are treatments to enable people with Tourette’s syndrome to manage their tics. Tics can vary in their frequency from day to day and can often be brought on by triggers such as stress and tiredness. Therefore, avoiding stressful situations and getting sufficient sleep can be ways to manage tics.

No single test can lead to a certain diagnosis, so a neurologist will work to eliminate the likelihood of other conditions first. A Tourette’s diagnosis would typically follow a year or more with several tics.

Treatment varies according to the individual person’s needs, but would usually involve a combination of medication and behavioural therapy to help the person learn to tolerate their tics or relieve them in other ways than going through with the tic itself. Medication does not work for everyone with Tourette’s.

There are a few ways to determine whether an employee has Tourette’s syndrome, or to confirm a Tourette’s syndrome diagnosis which requires reasonable adjustments:

  • An employee is likely to raise their Tourette’s with a potential employer at an early opportunity and will often have an idea of what helps them manage their condition in a work setting.
  • Even if the employee does not wish to, or have to, disclose their Tourette’s syndrome, an employer can focus on making reasonable adjustments, rather than seeking to determine the precise disability their employee has.
  • Given that Tourette’s syndrome can evolve over time, with tics varying in accordance to the person’s exposure to certain triggering situations, for example, it is important to maintain regular communication with the employee who has Tourette’s syndrome so that the reasonable adjustments remain appropriate.

What reasonable adjustments are possible with Tourette’s syndrome?

Employers have a legal duty to make reasonable adjustments for employees with Tourette’s syndrome if they know, are aware of, or could ‘reasonably be expected to know’ that the employee has Tourette’s syndrome. Most employees will tell their employer what reasonable adjustments they need. They often involve simple changes in the way an employer might usually do things.

If the employee does not disclose a health issue or disability which may affect their performance upfront, an employer should broach the subject sensitively if they suspect that there may be a disability behind the employee’s reduced performance. Reasonable adjustments can then be made in accordance with the employee’s needs, including, in the case of Tourette’s syndrome:

  • Accommodating home or remote working: this can help if the employee struggles with a lot of tics and may feel less self-conscious working from home. It may also be less disruptive for other employees.
  • Separate space in the office: so that an employee’s vocal tics do not disrupt colleagues and the employee does not stress about being disruptive, which can make tics worse.
  • A card to carry when visiting clients: for employees with Tourette’s syndrome making visits to clients or who are called out, as in the case of an electrician or plumber. A card or letter from their employer can help explain to a client at a glance that tics are part of their Tourette’s and nothing to be concerned about.
  • Additional breaks and a flexible schedule: if the person’s medication causes them side effects which might affect them during the working day. Equally, flexibility with working hours can give the person time to attend therapy appointments.
  • Raise awareness: for the employees with Tourette’s syndrome to be better understood in the workplace, and to make employees feel comfortable with asking for help related to their Tourette’s syndrome.

Tourette’s syndrome Signposting

Tourette’s Action – charity working to increase the social acceptance of people with Tourette’s in England, Wales and Northern Ireland, as well as to improve the provision of practical support for people with the condition.

The Brain Charity – a non-Tourette’s-specific charity working to improve research into neurological conditions, including Tourette’s, as well as to provide support and advice for people with the condition (0151 298 2999).

Other Research Resources

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