Abstract
Abstract
Objective: Chronic Tic Disorders (including Tourette Syndrome) are typically diagnosed in childhood and are characterised by persistent tics that vary in both severity and resolution when transitioning into adulthood. This study aimed to explore the journey to recognising tic symptoms in individuals (including reported adult or childhood onset) who self-reported to have atypically initiated and obtained a confirmed tic disorder diagnosis after the age of 18.
Method: 13 semi-structured interviews and one written response were recorded from participants (aged 18-59, median 43) recruited from and resident in the United Kingdom. Questions included personal adult experiences, early perceptions, social reactions, diagnostic seeking, and post-diagnosis reflections and advice. Transcripts were repeatedly read and analysed, with member checks conducted to confirm deductive validity of emerging themes through a reflexive thematic analysis.
Results: Analysis revealed three main themes with nine accompanying sub-themes. Minimisation encapsulated challenges participants faced in recognising and accepting their tic symptoms, including the interaction of societal pressures and lack of understanding. Ironic luck and privilege delved into the experiences of diagnosis, emphasising the role of luck, privilege, and personal ownership in overcoming barriers to recognition and support. The anti-climax theme examined the support mechanisms encountered, the impact their condition and diagnosis had on their daily activities, the process of reaching acceptance and collectively finding protection.
Discussion: The study highlights the complex journey adults with Chronic Tic Disorders face toward recognition, diagnosis, and self-acceptance of their tics. Barriers such as social, self and clinical minimisation and limited treatment options were identified. For this population, urgent improvements are needed in clinical understanding, accessible information, support to challenge ongoing stigma and the need to address the current shortcomings in treatment and prognosis.
Objective: Chronic Tic Disorders (including Tourette Syndrome) are typically diagnosed in childhood and are characterised by persistent tics that vary in both severity and resolution when transitioning into adulthood. This study aimed to explore the journey to recognising tic symptoms in individuals (including reported adult or childhood onset) who self-reported to have atypically initiated and obtained a confirmed tic disorder diagnosis after the age of 18.
Method: 13 semi-structured interviews and one written response were recorded from participants (aged 18-59, median 43) recruited from and resident in the United Kingdom. Questions included personal adult experiences, early perceptions, social reactions, diagnostic seeking, and post-diagnosis reflections and advice. Transcripts were repeatedly read and analysed, with member checks conducted to confirm deductive validity of emerging themes through a reflexive thematic analysis.
Results: Analysis revealed three main themes with nine accompanying sub-themes. Minimisation encapsulated challenges participants faced in recognising and accepting their tic symptoms, including the interaction of societal pressures and lack of understanding. Ironic luck and privilege delved into the experiences of diagnosis, emphasising the role of luck, privilege, and personal ownership in overcoming barriers to recognition and support. The anti-climax theme examined the support mechanisms encountered, the impact their condition and diagnosis had on their daily activities, the process of reaching acceptance and collectively finding protection.
Discussion: The study highlights the complex journey adults with Chronic Tic Disorders face toward recognition, diagnosis, and self-acceptance of their tics. Barriers such as social, self and clinical minimisation and limited treatment options were identified. For this population, urgent improvements are needed in clinical understanding, accessible information, support to challenge ongoing stigma and the need to address the current shortcomings in treatment and prognosis.
| Original language | English |
|---|---|
| Journal | Advances n Mental Health |
| Publication status | Accepted/In press - 23 Oct 2025 |
Keywords
- Keywords: tics, recognition, adulthood, tic disorders, Tourette’s, diagnosis