An Exploration of Support for Children and Young People with Tourette Syndrome in Schools

Posted on 1 August 2022 by Pippa McClounan

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A lay summary of Thesis research conducted by Hannah Warnock as part of a Doctorate in Educational Psychology

The aims of this research were to explore the current practices in UK mainstream schools for supporting children with Tourette Syndrome (TS). Online questionnaires were completed by 25 school staff with experience of supporting children with TS and 74 parents of children with TS. The questionnaires explored staff knowledge and confidence, difficulties for children with TS in school and support strategies in place. A second stage of the research involved interviews with 6 parents of children with TS to gain insight into their experiences related to support in school for their child with TS.

Questionnaire findings relating to school staff knowledge found that, on a 10-point scale (10 being the best, 1 the worst), school staff rated their own knowledge of TS at an average of 5.4/10 while parents of children with TS rated staff knowledge on average at 3.6/10. 50% of school staff reported receiving no training on TS and 41% of parents reported that nothing had been done to increase awareness of TS in their child’s school.

Where steps had been taken to increase knowledge of TS this often involved parents providing information or resources and training being provided by charities such as Tourettes Action. Findings from the questionnaires suggested common difficulties to be experienced by children with TS in school include: attention and concentration difficulties, sensory difficulties, stress or anxiety and exhaustion. Support that is most frequently in place for TS in schools includes: time out cards, quiet spaces, involvement of external services such as educational psychologists and specific exam arrangements. 30% of parents reported that there was no support in place for their child with TS, and reported challenges related to lack of understanding of TS in schools, inappropriate responses to TS, lack of consistency and reluctance to provide support.

Interviews with parents of children with TS were analysed using interpretative phenomenological analysis (IPA), from this process 3 themes were conceptualised: ‘understanding of TS’, ‘role of parents’, and ‘the journey’. Overall, parents of children with TS shared experiences of a journey to finding and implementing appropriate support for their child with TS in school, this often involved parents being heavily involved, advocating and ‘fighting’ to secure support in school.

There was a sense that there were many misconceptions and limited understanding of TS as a condition and the variability of the condition both within and between individuals. Alongside limited understanding of TS additional barriers to support included budget and policies, the pandemic, reluctance from school staff and inconsistency. On the other hand parents talked positively of specific supportive members of staff, supportive peers and effort from school as facilitating appropriate support for children with TS. The impact that TS as a condition as well as the ongoing effort involved in securing support in school was clear in interviews with parents describing mental health, financial and time implications for parents alongside missed learning and mental health challenges for the child with TS themselves.

It is hoped that this research can begin to understand how children with TS are supported in mainstream schools and areas in which this support may be improved.

Next steps following from this research may include increasing knowledge and understanding of TS in mainstream schools, this may include training opportunities and involvement from professionals such as educational psychologists in schools or as part of initial teacher training. In addition, this research may lead to increased recognition of challenges faced by families of children with TS and support for these families.

A full copy of the Thesis will be published on the Cardiff university database (https://orca.cardiff.ac.uk/) in the coming months following approval of amendments. 

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