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The experiences of diagnosis in adults with Tourette Syndrome

TS is a clinical diagnosis, meaning that there is not a specific test for the disorder, it has been noted to be difficult to diagnose with research showing delays in the diagnosis of TS (Wand et al., 1992; Freeman et al., 2000; Shilon et al., 2008). Cultural factors may also play a role in the social perceptions of TS and differences were found between cultures regarding the impact of TS on quality of life (Mathews et al., 2001; Zinner et al., 2012).

Very little research has looked at the subjective experience of having TS and as far as the author is aware there are no studies which have investigated the reasons for wanting or not wanting diagnosis in TS and whether having a diagnosis is a positive or negative experience for those with the disorder.

Looking at neurodevelopmental disorders such as autism spectrum disorders, attention deficit hyperactivity disorder and motor disorders, it appears that there are a range of advantages and disadvantages related to obtaining a diagnosis of a neurodevelopmental disorder. Significant disadvantages relate to the lack of a cure and the stigma associated with the disorder and the significant advantages are related to help and support following diagnosis and greater understanding of the disorder.

The aim of this research was to find out the experiences of those with Tourette syndrome (TS), specifically what having a diagnosis means and whether it this is useful for those with TS.

Method – Nine adult participants with TS were recruited through Tourette’s Action. Semi-structured interviews were completed either face to face or via telephone and the resulting transcripts were analysed using thematic analysis.

Results – There were three main themes resulting from the data:

  1. Diagnosis helps with coping
  2. Dissatisfaction with the diagnostic process
  3. Living with TS.

Diagnosis helps with coping – The majority of participants in this study felt that diagnosis helped with self-understanding and understanding for others, particularly with regards to naming the disorder, and being able to explain the behaviour to others. Several participants felt strongly that obtaining a diagnosis was necessary in order to access the ‘real world’ and felt that without it they would have developed mental health problems with some participants experiencing suicidal thoughts prior to diagnosis.

In keeping with research from neurodevelopmental disorders, (Huws & Jones, 2008; Young et al., 2008; Punshon et al., 2009) participants in this study highlighted access to support and resources as a key benefit of the diagnosis, particularly being able to meet others with the disorder which participants felt was important in providing a sense of belonging and understanding.

Dissatisfaction with the diagnostic process – Although most participants felt that diagnosis was important in coping with TS, dissatisfaction with the diagnostic process was a common theme amongst participants and many experienced poor communication from clinical staff during diagnosis and some felt that following diagnosis they did not receive appropriate medical intervention or support. Participants felt there was a general lack of knowledge surrounding TS outside of specialist TS services and several participants felt that the person who diagnosed them did not have good knowledge or understanding of the condition.

Living with Tourette syndrome – Several participants were unhappy regarding misunderstandings surrounding TS particularly the way in which it was portrayed in the media with a strong focus on coprolalia. In light of the stigma associated with the diagnosis, participants expressed concerns about the future and prognosis. Participants in this study expressed mixed feelings regarding ownership of TS. Some were proud of the disorder and were actively involved in educating others and running support groups whereas others held strong resentment toward the TS and attempted to hide their tics.

Conclusion – The findings suggest that a diagnosis of TS is useful for those with the disorder but indicate a gap in services for those with TS post diagnosis. Results indicate that increased knowledge of TS for clinicians and improved support post-diagnosis will be useful in continuing to help those with TS to cope with the disorder.

This research was completed by Anekea Ross as part of the MSc in Clinical Neuropsychiatry at the University of Birmingham and was supervised by Dr Hugh Rickards. I would like to thank each of the participants who took the time to take part in this study and discuss their experiences with me. Special thanks to Dr Hugh Rickards, and Tourette’s Action for supporting this work.

If you have any further questions regarding this research you may contact the principal investigator Anekea Ross. Any concerns regarding this research should be directed to the Project Supervisor, Dr Hugh Rickards at the University of Birmingham on 0121 301 2002 or Seonaid Anderson at Tourettes Action.

References

Freeman, R.D., Fast, D.K., Burd, L., Kerbeshian, J., Robertson, M.M., Sandor, P., (2000). An International perspective on Tourette Syndrome: selected findings from 3500 individuals in 22 countries. Developmental Medicine & Child Neurology, 42: 436–447

Huws, J.C., & Jones, R.S.P., (2008). Diagnosis, disclosure and having autism: An interpretive phenomenological analysis of the perceptions of young people with autism. Journal of Intellectual & Developmental Disability, 33(2), 99-107.

Mathews, C.A., Amighetti, L.D.H., Lowe, T.L., Van de Wetering, B.J.M., et al., (2001). Cultural Influences on diagnosis and perception of Tourette Syndrome in Costa Rica. J. Am. Acad. Child Adolesc Psychiatry, 40(4), 456 – 463

Punshon, C., Skirrow, P., & Murphy, G., (2009). The ‘not guilty verdict’: Psychological reactions to a diagnosis of Asperger syndrome in adulthood. Autism, 13(3) 265-283.

Shilon, Y., Pollack, Y., Benarroch, F., Gross-Tsur, V., (2008). Factors influencing diagnosis delay in children with Tourette syndrome. European Journal of Paediatric Neurology, 12, 398- 400.

Wand, R., Shady, G., Broder, R., Furer, P., Staley, D., (1992). Tourette Syndrome: Issues in Diagnosis. Neuroscience and Biobehavioural Reviews, 16, 449 – 451.

Young, S., Bramham, J., Gray, K., & Rose, E., (2008). The experience of receiving a diagnosis and treatment of ADHD in Adulthood: A qualitative study of clinically referred patients using interpretive phenomenological analysis. Journal of Attention Disorders, 11(4), 493-503

Zinner, S.H., Conelea, C.A., Glew, G.M., Woods, D.W., Budman, C.L., (2012).Peer victimisation in Tourette syndrome and other chronic tic disorders. Child Psychiatry Hum Dev. 43(1) 124-36.

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