Experience of self-identification, diagnosis & support for adults with tic disorders in the UK

Posted on 13 February 2024 by Pippa McClounan

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A summary of a recent research study supported by TA

Thanks to the engagement of the TS Community, studies like the following are made possible. We're keen on sharing the insights from these research endeavors to showcase the advantages of participation. Please continue reading for a synopsis of 'Experience of self-identification, diagnosis & support for adults with tic disorders in the UK'.

A lay summary of a research study conducted by the University of Hertfordshire and Nottingham

Our study explored the self-recognition journey and experience of tic disorders (including Tourette Syndrome) in adults’ resident in the United Kingdom. Traditionally, tic disorders are seen as conditions that start in childhood and may fade away or continue into adulthood in a less severe form. However, symptoms can come back after periods of quiet, even in adults. Because medical practices focus on childhood cases, we wanted to explore the advantages or barriers for adults with tic disorders to recognise they have tics and whether they choose to get diagnosed and treated.

An online survey was completed by 42 adults with tics. One part of this cohort were adults who obtained a confirmed diagnosis in adulthood (after the age of 18), with the other part consisting of adults who had self-identified with a tic disorder in adulthood (no official diagnosis in either childhood or adulthood). The online survey consisted of three parts asking the participants; their experiences and opinions regarding their tics and what impact that may have on daily life, the process and reason for attaining a diagnosis or self-identifying with a tic disorder and what post-identification support they received.

Our results captured that our participants experienced various vocal and motor tics. In line with other research, no significant difference was found between the tics of those who recalled having tics in childhood, compared to those who reported that their tics started when they reached adulthood (adult-onset). It was also found that those with more frequent, intense, and severe motor tics had a higher tendency towards experiential avoidance. Additionally experiential avoidance was found to decrease with increasing age. Almost all our adults voiced discontent with the diagnostic process, particularly concerning the information given and the absence of support afterward. Those who self-identified (without formal diagnosis) mentioned fear of being dismissed, lengthy waiting lists and a lack of understanding from healthcare providers as reasons for not pursuing a formal diagnosis. The findings underscore the necessity for healthcare practitioners to have a standardised and enhanced understanding of tic disorders, including how to effectively support adults seeking tic disorder acknowledgement and comprehension later in life.

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