Making the shoe fit: A thematic analysis exploring the journey of adult tic recognition and acceptance in the United Kingdom

Objective: Chronic tic disorders (including tourette syndrome) are typically diagnosed in childhood and characterised by persistent tics that vary in both severity and resolution. This study aimed to explore the journey to recognising tic symptoms in individuals in the United Kingdom who self-reported as having atypically initiated and obtained a confirmed tic disorder diagnosis after the age of 18.

Method: Thirteen semi-structured interviews and one written response were recorded from participants (aged 18-59, median 43) investigating personal adult experiences, early perceptions, diagnostic seeking, and post-diagnosis reflections. Transcripts were analysed through reflexive thematic analysis, with member checks confirming deductive validity.

Results: Analysis revealed three main themes with nine accompanying sub-themes. Minimisation encapsulated challenges in recognising and accepting tic symptoms. Ironic luck and privilege revealed the experiences of diagnosis, emphasising the role of luck, privilege, and personal ownership to recognition and support. Anti-climax examined support mechanisms, impact their condition and diagnosis had on daily activities, reaching acceptance and finding protection.

Discussion: The study highlights the complex journey adults with chronic tic disorders face towards diagnosis and self-acceptance, including social, self and clinical minimisation and limited treatment options. Greater clinical understanding and accessible information is needed to challenge stigma and enhance long-term outcomes.