Letting Tourette's be?

Abstract

Tourette Syndrome is almost exclusively seen through the lens of disruptive tics. The most relevant clinical question seems to be: how to combat tics? In line with emerging calls from those diagnosed, we argue for a more positive approach focused on the Tourettic person, rather than on disruptions flowing from tics. This change of focus is ethically motivated but has important theoretical implications. As an exercise in ‘letting be’ (i.e. of finding out what something is on its own terms, through sensitively interacting with it), it brings out the basic relationalities of Tourette’s with both the non-human and the social environment. Echoing Tourettic lived experience, disruptive tics then emerge as the tips of icebergs consisting of spontaneous, even playful, interactions with the environment. A more nuanced view emerges in which problems experienced by those diagnosed are no longer located in individual brains but require comprehensive study of how tics situationally develop. Listening attentively to lived experience reports leads to a dramatic shift away from the classical ‘lack of inhibition’ model, to reveal a constant pressure to inhibit actions that one feels strongly and spontaneously compelled to do. This inhibition is dependent on what is signaled as disruptive by others and is therefore suppressed for their sake. The Tourettic person’s distress or felt impairment seems more tied to an onlooker’s focus on their tics, than on the severity and frequency of their tics. We conclude that ‘letting be’ is an attitude towards Tourette’s that is worth considering, both clinically and theoretically. In fact, we believe that the overall good prognosis as to felt impairment correlates with finding trusted environments where one is ‘let be’ (without being ‘let go of’) instead of living under constant scrutiny.

How do children with Tourette’s syndrome and their caregivers live with the disorder? A systematic review of qualitative evidence

“…Since the symptoms of tics tend to decrease after adolescence ( 3 ) and the ways of coping with tics have changed over time, it could be expected that secondary distress caused by tics, such as embarrassment or worry, has decreased. Indeed, the positive prognosis of TS is confirmed in recent research ( 45 ) and is hypothesized to be related to better acceptance of tics by the environment ( 46 ). Children with TS can gradually become experts on TS and themselves if they confront and accept their symptoms rather than try to suppress them.…”

“…Acceptance from others is an important factor in predicting a positive prognosis for TS ( 45 , 46 ). Therefore, acceptance of TS should be performed in social contexts beyond individual patients ( 12 ).…”