Understanding Tourette Syndrome: A Neurological Condition
Named after the 19th-century researcher Gilles de la Tourette, Tourette syndrome is a neurological or neurodevelopmental condition characterised by involuntary movements or vocalisations known as tics. The condition has gained renewed public attention following Robert Aramayo's Bafta win for best actor in 2026 for his portrayal of a Tourette syndrome campaigner in the film I Swear. This article, originally published in 2023 and republished by The Independent, provides essential information about the syndrome, its management, and the ongoing efforts to reduce stigma.
What Exactly is Tourette Syndrome?
Tourette syndrome is defined by the presence of both motor and vocal tics occurring nearly every day for more than twelve months. While many people, especially children, experience simple tics, the official diagnosis requires this persistent pattern. The condition typically begins in childhood, often during the early primary school years, though it can occasionally manifest later in life.
Types of Tics and Their Characteristics
Tics in Tourette syndrome are categorised into two main types: motor tics and vocal tics. Motor tics frequently involve the head and neck area and can include behaviours such as eye blinking, facial grimacing, jerking of the head or neck, mouth movements, and shoulder or body jerks. Vocal tics encompass sounds like throat clearing, humming, huffing, grunting, sniffing, high-pitched squeals, or even parts of words, syllables, or entire phrases.
In more severe cases, individuals may exhibit complex tics involving orchestrated sequences of movements, such as turning in a specific direction or tapping an object a certain number of times. These sequences often feel necessary to the person to relieve built-up tension, following what is known as a premonitory urge—a sensation similar to an itch or the feeling before a sneeze.
The Course and Management of Tics
Tourette syndrome often follows a frustratingly waxing and waning course, with periods where tics may not be noticeable for weeks or months, only to reappear. Stressful events like starting a new school term or moving house can exacerbate tics, though sometimes they worsen without any apparent reason. Tics can also be suggestible, meaning discussing them might trigger their occurrence.
Importantly, tics possess a degree of suppressibility. Individuals, especially children, may consciously or subconsciously suppress tics in social settings like school to avoid teasing, only to experience a release of tics afterward. Many people learn to camouflage tics, transforming an urge to jerk an arm into a more socially acceptable action like scratching the chin, which can be part of therapeutic strategies.
Treatment Approaches for Tourette Syndrome
Treatment is not always necessary for Tourette syndrome, particularly if it does not impact a person's self-esteem or daily functioning. Many cases are mild and do not require intervention. However, since children with Tourette syndrome often have co-occurring conditions such as ADHD, OCD, and anxiety, paediatricians may prioritise treating these issues first.
When treatment for tics is needed, it typically involves psychological support. Psychologists often focus on general anxiety management strategies, as anxiety can significantly drive tics. A specialised program known as comprehensive behavioural intervention for tics is available but can be difficult to access due to limited availability. Medications exist for severe cases, but they are not highly effective at reducing tics and may cause side effects.
The Genetic Basis and Stigma Reduction
Tourette syndrome is largely genetic, resulting from a combination of genes rather than a single gene. It is not caused by parental actions, childhood behaviour, or events during pregnancy. Despite this, the condition remains highly stigmatising, as severe tics can draw unwanted attention and cause embarrassment through no fault of the individual.
Reducing stigma is crucial. Education plays a key role; for example, children with Tourette syndrome, supported by carers or parents, can explain their condition to classmates to foster acceptance. Organisations like the Tourette Syndrome Association of Australia provide valuable resources and information to aid in this effort. Most people with Tourette syndrome can lead normal, fulfilling lives with proper understanding and support.
