Experiences of a functional tics diagnosis in adolescents

Posted on 27 January 2025 by Pippa McClounan

Share

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 to share the insights from these research endeavors to showcase the advantages of participation. Please continue reading for a synopsis of the study.

A lay summary of a research study 'Experiences of a functional tics diagnosis in adolescents'

Authors: Dr Olivia Burn, Dr Morvwen Duncan, Dr Eve McAllister, Dr Tara Murphy & Dr Alana Loewenberger

In 2020 there was an increase in young people experiencing functional tics. However, there is not much known about functional tics and what helps people with functional tics. It is important to improve awareness and understanding of functional tics to improve the wellbeing of young people with functional tics and their families and the support they receive.

In 2023 we interviewed seven 12–18-year-old girls who had a diagnosis of functional tics and eight parents of young people with functional tics. We interviewed them to try to understand what it is like to have functional tics, to be given a diagnosis of functional tics and to access support for functional tics.

Young people and parents shared that the functional tics started very suddenly, and they were frightening for everyone as they did not know what was happening, what to do, or how to help.

Families found it hard to get help for functional tics and had to “fight” to get help. Parents said that they often felt blamed by professionals for the functional tics and young people felt others thought they were making up the functional tics. Families found it hard to have the impact of functional tics recognised.

Families told us that many professionals were not aware of functional tics or services that could help. This made it harder for them to find professionals who could help and so it took longer to get help for functional tics.

When young people were given a diagnosis of functional tics, a thorough explanation was often not given so it was hard to understand why functional tics were happening and what would help them. Families learnt about functional tics from other people with functional tics, and this helped them feel less alone. Young people also found psychological therapy helpful, as it helped them to understand why they had functional tics, what triggered them and aided them to develop strategies to manage them.

Young people and carers experienced stigma and discrimination related to functional tics. They felt it was really important for people to learn more about functional tics to improve peoples’ understanding. Families also said that it was important for professionals to learn more about functional tics so that young people can get a diagnosis and access useful support more quickly.

The findings of the study have been presented at an international conference (ESSTS) and will be published in an academic journal. The study findings will also be shared with a group of academics and professionals working with young people with tics and functional neurological disorders.

Return to news