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Research findings from education study for young people with TS

Posted on 27 November 2014


Needs and strengths of pupils with a dual diagnosis of TS and autism.

Earlier in 2014 Debbie Horton from Birmingham City Council, Access to Education, Communication and Autism Team conducted research into the level of understanding staff in mainstream schools have about the needs and strengths of pupils with a dual diagnosis of TS and autism. As part of this research the support pupils with TS presently receive and what support they would like to receive was investigated through an online survey on the Tourettes action website. The responses from parents by far overwhelmed the response of pupils and are reflected in the findings.
Responses from pupils
Responses from pupils recognised support presently used by mainstream schools included special seating arrangements in class, one to one or small group catch up sessions for specific subjects, mentoring, time out, and time to do activities that relieved tics such as running, art or drumming. Support from friends was patchy and depended largely on understanding of TS.
Support pupils would like to receive included understanding of TS and its complexities and acceptance from others. Understanding of concessions needed to support writing; homework and exams were highlighted as a major concern along with the importance of being allowed to tic away from others.
Responses from parent and carers
Parents and carers identified current interventions as one to one and small group sessions for specific subjects, time out, sensitive seating, mentoring and specific activities that relieved tics. Many said if their child had friends that knew they were very supportive. Some parents/carers felt their child tried to hide their tics from staff and peers and highlighted the importance of provision of quiet areas to release tics in private.
Many parents and carers said they would like their child’s teachers to understand TS and wanted whole school training to include all teachers, including senior management and Head Teachers. They identify that it is often senior management that manage pupil’s behaviours in school who need to understand the issues. Parents/carers wanted staff to understand the consequences of suppressing tics and intrusive thoughts all day which include exhaustion, anxiety, concentration difficulties and rage attacks. Parents/carers would like more support with organisation and home school communication with written instructions for homework and course work. They felt educated peers would decrease incidents of their child being thought of as rude and reduce experiences of ridicule or feelings of embarrassment.  
TS awareness training for whole school staff and peers would develop knowledge of the complexity and characteristics of TS. Training would also improve understanding of interventions that could be used to support.
Each person with TS is complex and unique therefore information about the individual’s strengths and needs from all concerned including the pupil, their parents, other staff in school and other professionals involved needs to be obtained. This could be done through a Person Centred Review PCR meeting. The individual strengths and needs of the pupil can then be identified along with a plan of action identifying how symptoms and behaviours would be supported. Consideration to the medical, physical, social and emotional well-being as well as the academic needs of the pupil should all be considered and planned for. However because tics and symptoms can change at any time this plan must include opportunities for individuals and or their parents to communicate regularly, daily if necessary, with a member of staff that understands the complexities of TS.

An awareness presentation has been developed by members of the Access to Education, Communication and Autism Team to raise understanding of pupils that have a dual diagnosis of TS and autism to staff in mainstream schools. This presentation has been presented to existing team members and put on to the induction programme for new staff. It will be offered to all Birmingham mainstream schools by team members who have pupils with a diagnosis of TS and autism on their caseload. Team members working in schools where there are pupils with this dual diagnosis will encourage schools to use PCR meetings to collate information into an action plan and to review the plan regularly.

This is something Tourettes Action is keen to build on and we would be delighted to hear from parents or professionals about this subject.

If you have any questions about the research or feedback please contact
Seonaid Anderson, Research Manager, TA.



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