Experiences of self-identification, diagnosis and support for adults seeking a recognition of tic disorders in the United Kingdom

Abstract Aims: This study aimed to examine the experiences of self-identification, diagnosis, and support for adults with tic disorders (including Tourette Syndrome) in the United Kingdom (UK). Background: Traditionally viewed as a neurological disorder of childhood-onset, tic disorders have been observed to remit or persist, often in a milder form, into adulthood. However, the reappearance of problematic symptoms after periods of asymptomatic latency might be more common than previously recognized. The medical exposure and standardization of clinical practice for primary adult-onset or non-typical adult-presenting cases of tic disorders is currently limited and poses barriers to diagnosis. Methods: An online survey of 42 adults with self-identified tic symptomology explored their tic recognition and journey of attaining a confirmed diagnosis and/or self-identifying after the age of 18 in the UK. Findings: No significant differences were found between adult and childhood-onset cases. Elevated scores on the Acceptance and Action Tic Specific Questionnaire (AAQ-T) correlated with higher overall frequency, intensity, and severity of motor tics from the Adult Tic Questionnaire (ATQ). The AAQ-T was also shown to negatively correlate with increasing age. Nearly all adults expressed dissatisfaction with the diagnostic process, especially regarding information provided and lack of post-diagnostic support. Those who self-identified quoted fear of dismissal, long waiting lists and lack of understanding from clinicians as reasons for not seeking a formal diagnosis. Overall, the results emphasize the importance for a standardized improved comprehension of tic conditions in healthcare including how to best support adults seeking recognition later in life.