JOURNAL OF PSYCHOPATHOLOGY 2020;26:196-201 Original article doi: 10.36148/2284-0249-357 The contribution of autobiography and literature to the understanding of Tourette syndrome Matthew Neal1, Andrea Eugenio Cavanna1,2,3 1 Department of Neuropsychiatry, BSMHFT and University of Birmingham, United Kingdom; 2 School of Life and Health Sciences, Aston Brain Centre, Aston University, Birmingham, United Kingdom; 3 Sobell Department of Motor Neuroscience and Movement Disorders, Institute of Neurology and University College London, United Kingdom SUMMARY Objective Tourette syndrome (TS) is a neurodevelopmental condition characterised by the presence of multiple tics and often associated with co-morbid behavioural problems, such as obses- sive-compulsive symptoms, attentional problems and affective dysregulation. First-person accounts of TS are particularly important to understand key features of subjective experi- ences related to tic expression and other aspects at the interface between neurology and psychiatry. We therefore set out to explore the role of modern literature and autobiography in portraying TS to the general public. Methods We reviewed the full-text of a representative sample of modern literary texts and autobiogra- phies and critically appraised their contributions to the understanding of Tourette syndrome. Results The reviewed texts explored the experience of TS from a variety of literary perspectives and Received: October 22, 2019 demonstrated the contribution of autobiographical accounts to understanding tics and the Accepted: November 25, 2019 rich inner world of patients with TS. Conclusions Correspondence Our findings highlight the importance of literary accounts (particularly if written from a Andrea E. Cavanna Department of Neuropsychiatry, National first-person perspective) in providing education about potentially stigmatising conditions, Centre for Mental Health, 25 Vincent Drive, such as TS. Birmingham B15 2FG, United Kingdom Email: [email protected] Key words: Tourette syndrome, tics, autobiography, subjective experiences, behaviour Conflict of interest The Authors declare no conflict of interest Introduction: Tourette syndrome and the purpose of patient How to cite this article: Neal M. Ca- narrative vanna AE. The contribution of autobiog- Tourette syndrome (TS) is a neurodevelopmental condition characterised raphy and literature to the understanding 1 of Tourette syndrome. Journal of Psycho- by multiple motor tics and at least one phonic tic . Tics are defined as re- pathology 2020;26:196-201. https://doi. petitive, non-rhythmic and a-finalistic movements (e.g. blinking, grimacing, org/10.36148/2284-0249-357 shoulder shrugging) or vocalisations (e.g. grunting, throat clearing, shout- ing) perceived as involuntary and associated with characteristic subjec- © Copyright by Pacini Editore Srl tive experiences of urges to tic, also called sensory tics 2. TS is a chronic OPEN ACCESS disorder with onset around the age of 6 and chronic course with waxing and waning severity across the lifespan 3. Once thought to be a rare and This is an open access article distributed in accordance with the CC-BY-NC-ND (Creative Commons Attribu- somewhat bizarre medical curiosity, TS has been re-conceptualised by tion-NonCommercial-NoDerivatives 4.0 International) recent epidemiological studies as a relatively common neurological con- license. The article can be used by giving appropriate credit and mentioning the license, but only for non- dition, affecting up to 1% of the general population, with different degrees commercial purposes and only in the original version. 3 For further information: https://creativecommons.org/ of severity . Co-morbid behavioural problems are present in about 90% licenses/by-nc-nd/4.0/deed.en of patients, with obsessive-compulsive symptoms and attention-deficit 196 The contribution of autobiography and literature to the understanding of Tourette syndrome and hyperactivity being most commonly reported and I could feel the tension building in the joints and mus- playing a significant role in the impact of TS on health- cles of my shoulders, neck, torso, and arms, the half of related quality of life 4-6. The aetiopathological models of my body that bears the brunt of most of my tics (p. 20). TS have undergone a paradigm shift between the be- Here the physical symptoms are described almost like ginning and the end of the last century, from Ferenczi’s an assault on the body, which becomes a notable style psychoanalytic observations on tics to modern biologi- of writing in this account 15. Again, there is the reminder cal models in which genetic factors play a central role 3. that symptoms such as motor tics do not just happen Historically, TS has often been viewed in literature as to the patient, but that they also have personal conse- “shorthand for concealed insanity or malevolence” 7, quences and significance for them which should not be but the place of this condition in non-medical literature overlooked16. This added quality to the experience of reaffirms the value of the patient’s own story 8 and the tics is described by Wilensky: importance of the patient as an individual 9. Wrong movements are tics, motions with no point, black The meaning of patient narratives or autobiographical sheep cousins of the hand that reaches over the shoul- accounts has been thought to lie in providing the unique der to scratch the back (p. 35). opportunity for patients to consider and approach their This is reflected in the second account, Twitch and illness differently, and for the clinician, the means by Shout by Lowell Handler 17. Handler provides this add- which to treat the patient as a whole 10. Making the ed quality to his tics, describing how “my Tourette was ‘whole’ person matter more in modern clinical encoun- expressing itself” (p. 31) and the variability in his symp- ters is an important asset of these patient autobiogra- toms by explaining that “I never knew what form it would phies or ‘pathographies’ 11. Such pathographies have take, and when” (p. 45). Here the tics are a wholly sepa- had considerable historical importance at times when rate entity, and this relationship of the patient to their TS patients chose to communicate with their physicians via is an important second theme of these accounts. personal correspondence, a practice which character- ised 18th century medicine 12. While doctors cannot ex- perience the patient’s illness with them, they can learn A personal relationship to look for those personal reactions which are an impor- Doctors have been criticised for distancing themselves 16 tant part of patient narratives12. Others have suggested from their patients too easily , and being primarily con- 18 that the benefits of these accounts can permeate right cerned with treatment . The need to rediscover the 8 through to the very mind-set which doctors use in their importance of personal reactions to illness may ben- 19 communication, and that bringing mindfulness into their efit much from these autobiographical accounts . The interactions can benefit themselves as well as their pa- nature of a patient’s personal relationship with their tics tients 13. Using this kind of awareness and sense of em- is described in Handler’s account using rich visual im- pathy are skills which are in high demand in psychiatry agery, which helps to promote understanding in those 20 given the emotional weight of the situations which psy- who are unfamiliar with the condition : chiatrist and patient are part of 8. If I could come to grips with some elusive inner demon The benefits of these narratives are valuable in the un- that was strangling me, I thought, I would be able to derstanding of TS, firstly in the description of the mo- imagine myself miraculously “cured”. If I could solve tor and phonic tics which characterise this condition. my problems, then my calmer, more “normal” self would This paper will explore the experience of TS from a va- emerge as if from a cocoon (p. 33). riety of perspectives and demonstrate the contribution Thus, while Handler gives a visual representation to his of these accounts to understanding this condition and tics, Wilensky puts a personal distance between herself the rich inner world which we may be privileged to ob- and her TS, viewing her tics as “characteristics of some- serve. The authors will then consider how comparisons body else: a casual acquaintance, a friend of a friend” can be made and the lessons which can be learned (p. 14). Literature therefore demonstrates to the reader from published academic accounts, which are derived that there can be a complex relationship between indi- from a different part of the spectrum of style, form, and viduals and their TS, cautioning against oversimplifying language. this dynamic relationship and preventing to the creation of false assumptions. Physical symptoms False assumptions In the first of these accounts, Passing for Normal by Wilensky wrestles with the idea that her tics may define Amy Wilensky, the author inevitably provides some de- her as much as any other unique physical character- scription of her tics 14. However, the value to the reader istic: lies in the language used to describe them and what Eliminating them with the pop of a pill was an eradica- they mean to Wilensky and others like her. She recalls: tion of my very soul, a self-inflicted stab wound to the 197 M. Neal, A.E. Cavanna integrity of my character, the very make-up of my mole- labels can force patients into expected categories and cules (p. 161). ultimately lead them to lead less fulfilled lives 20. In ad- Through this powerful description, Wilensky demon- dition to the value the diagnosis holds for the patient, strates one of the key values of such autobiographies both authors also demonstrate how the diagnosis leads – their ability to bring the condition to the very centre of to a sense of ownership over the condition (and empow- one’s personal identity and underline its importance to erment), to the point that they are presenting the facts the experience of life 11.