....in celebration of neurodiversity

Friday 20 January 2012

Treatment strategies for tics in Tourette syndrome.

Clare M. Eddy, Hugh E. Rickards and Andrea E. Cavanna  Ther Adv Neurol Disord. 2011
Download full article in pdf format (free)

Probably the best current review of evidence-based pharmacological and other therapeutic approaches for tics in Tourette syndrome:


Abstract: "Tourette syndrome (TS) is a chronic neurodevelopmental disorder characterized by tics: repetitive, involuntary movements and vocalizations. These symptoms can have a significant impact on patients’ daily functioning across many domains. Tics tend to be most severe in child and adolescent sufferers, so their presence has the potential to impact a period of life that is both critical for learning and is often associated with the experience of greater social tension and self-consciousness than adulthood. Furthermore, control over tics that lead to physical impairment or self-injurious behaviour is of vital importance in maintaining health and quality of life. There are numerous complicating factors in the prescription of treatment for tics, due to both the side effects associated with alleviating agents and patient characteristics, such as age and comorbid conditions. This review summarizes literature pertaining to the efficacy and safety of both traditionally prescribed and more modern medications. We also discuss the merits of behavioural and surgical techniques and highlight newer emerging treatments. Although treatment response is to some extent variable, there are a number of agents that are clearly useful as first-line treatments for TS. Other interventions may be of most benefit to patients exhibiting refractory tics or more specific symptom profiles."

Inclusive or reductionist approaches to 'spectrum' disorders?

There are many proponents for the breaking down of symptom and behaviour profiles of spectrum disorders, such as Tourette Syndrome and autism (ASD/Asperger's), into discrete 'comorbid' disorders. Despite this tendency, preferred by many psychiatrists/psychoanalysts and to a somewhat lesser extent, neurologists and neuroscientists, substantial evidence for the existence of multiple co-occuring comorbidity, in all cases, is yet to be established convincingly. Clearly comorbidity can and does occur between disorders but can be assumed too readily if definitions are not concise or substantiated.

Symptoms and signs do not directly equate to disorders (a symptom is what a patient experiences, a sign is what a physician observes/elicits). Attention deficit is a symptom but cannot be (definitively) said to represent, or belong exclusively to, Attention Deficit Disorder (ADD) as there are other possible neurological or psychological (and environmental) mechanisms by which attention deficit may occur. Many 'disorders' are 'diagnosed' in a relatively subjective manner, using behavioural checklists and sometimes almost arbitrary fencing off or 'recognition' of perceived symptom groupings. It may not seem important that a person is diagnosed with an inclusive disorder in which the symptoms and behaviours are all seen as a manifestation of that disorder or whether a core disorder is diagnosed along with other separate comorbid disorders. However this does matter in many ways to the patient, their family and especially in terms of medical and other provision they may require. Although a core neuro-developmental disorder has been diagnosed, invariably, and for many disconcertingly, the comorbid disorders are defined as psychiatric.

Non-medical professionals such as teachers, educational psychologists, speech and occupational therapists rely heavily on expert opinion and have built paradigms around specific 'disorders' and the assumed difficulties they represent and hence the ways in which they can be approached. Individuals, their parents and family want to be able to make sense of the diagnoses they have been given and increase their understanding also. Many find an 'alphabet soup' diagnosis of multiple disorders bewildering and confusing. Another concern, especially for Tourette Syndrome, is the disparity in clinical treatment response achieved when those comorbid disorders are treated (in isolation) compared to the responses expected in individuals without Tourette Syndrome with those disorders.

This diagnostic uncertainty and a paucity of underlying mechanisms to explain many of those 'disorders' also has profound consequences for research. Research involves establishing a model for a disorder and then designing data collection and analysis around already established diagnostic categories and criteria. Researchers work on the assumption that what they are looking for and quantifying is real. This breaks down when the diagnostic definitions and symptom-separation may be erroneous, artificial or poorly defined. If TS is perceived as an 'inclusive' spectrum disorder, symptoms, although variable and diverse, will mostly (excepting genuine comorbid symptomatology) be seen as intrinsic to that disorder and suggest appropriate directions for research and help in determining underlying mechanisms for a disorder of greater complexity. However if symptoms such as obsessive and compulsive thinking and behaviours are allocated to a separate disorder (OCD), attention deficit and hyperactivity are allocated to ADD/ADHD, low mood to an affective disorder (depression) or theory of mind difficulties to autism, then clearly the approach will differ markedly. There is much research on TS, OCD, ADD, SPD and ASD, however the boundaries are not as distinct as one might imagine and symptom patterns may be blurred as a number of characteristic symptoms are shared between disorders.

Whether an inclusive (spectrum) or comorbidity (reductive) approach is taken for defining and understanding the symptoms and behaviours of Tourette Syndrome, it is essential that an awareness is achieved of the full range and expression of possible symptoms and behaviours. Many parents of children with a diagnosis are often left without knowing what to expect or why certain behaviours are occurring or whether other children and parents have experienced those issues. In a nutshell, there needs to be an awareness and understanding of the full spectrum of Tourette Syndrome. Parents are frequently informed that one behaviour belongs to Tourette Syndrome but another does not, often without sufficient explanation or worse due to insufficient knowledge of the expert consulted. 

Not knowing the 'true' presentation of Tourette Syndrome is a common difficulty for many physicians, therapists, scientists and the public in general. There is some friction between those who have or live with the disorder and the professional 'experts' who differ widely in their understanding and interpretation. One thing that is certain is that people with TS rarely feel that experts fully understand what the disorder entails and fail to have sufficient insight into the existential nature of TS. It is often felt that simplistic and reductionistic explanations are given that do not concur with actual experience. Science and (medical practice) should always be evidence-based but concern is being expressed that too few professionals are familiar with the current available literature and thinking and that uncertainties and errors of definition (especially in diagnostic definition) are undermining the value of research. 

Tourette Syndrome is not a 'new' disorder and was described in detail more than a century ago. There is a substantial volume of scientific, clinical and biographical literature but what is lacking is a synthesis. This is, in part, due to a hiatus in objective study of TS during the rise (and subsequent decline) of the Freudian derived school of psychoanalysis/psychiatry which diverged from the neurological research and clinical approaches that once prevailed. This absence of objective research on Tourette Syndrome, during the first half of the 20th Century, was alleviated by the pioneering work of Dr Arthur Shapiro and others during the 1960s.

Wednesday 18 January 2012

Prof. Peter Hollenbeck, neuroscientist talks about TS

Excerpt from 'Tourette's on the Job'

Cause for Concern: Psychiatry and Autism in France - “Le Mur” by Sophie Robert

In France, controversially, autism is commonly regarded as a psychosis rather then a neuro-developmental disorder by psychiatrists. 'Treatments' often follow the Betelheim and Freudian paradigms, and psychoanalytical approaches are employed, for 'treating' and 'curing' autism in childhood. Other 'evidence-based' approaches, used elsewhere, are often disregarded. The causes of autism are said to be a consequence of inappropriate parenting and much of the blame is assigned to mothers. Some of the professional views conveyed in the documentary are highly 'accusatory' and may be upsetting and offensive to many.

English subtitled version of the French documentary “Le Mur ou la psychanalyse à l’épreuve de l’autisme” by Sophie Robert and Autistes Sans Frontières in September 2011. This 52 minute documentary results from a 4 year investigation of the views and practices of psychiatrists and psychoanalysts in France.

Update: Legal action has been taken by three psychiatrists who appear in this documentary, in an attempt to prohibit distribution and showing of Le Mur in France.


Update: Le Mur is now available in full on YouTube:



Support 'The Wall': http://www.supportthewall.org/2011/12/watch-the-wall-le-mur-by-sophie-robert/


Original source article
THE WALL, OR PSYCHOANALYSIS PUT TO THE TEST FOR... by runmagali

Monday 16 January 2012

Teen protests to PM over Tourette's comments

"An Inverness teenager has written to Prime Minister David Cameron to express her outrage and disappointment at comments he made that facing the shadow chancellor in parliament was "like having someone with Tourette’s sitting opposite you."
Charleston Academy pupil Eilidh Dyker says she felt compelled to write to Mr Cameron over his comments about Ed Balls’ heckling in an interview with a Sunday newspaper.
The Prime Minister has since apologised on national television, stating: "I was speaking off the cuff and if I offended anyone, I am very sorry."
But 16-year-old Eilidh, .. who has Tourette syndrome, feels comments from someone as high profile as Mr Cameron are offensive and a setback for anyone suffering from the condition.
"I can’t sit back in silence after a comment like that," she said, adding that it was right he has been criticised for his remarks...." Link to full article Inverness Courier

Sunday 15 January 2012

Social reasoning in Tourette syndrome

Eddy CM, Mitchell IJ, Beck SR, Cavanna AE, Rickards H
Social reasoning in Tourette syndrome.
Cogn Neuropsychiatry 2011 Jan 18.:1-22.


Abstract: 
Introduction. Tourette syndrome (TS) is thought to be associated with striatal dysfunction. Changes within frontostriatal pathways in TS could lead to changes in abilities reliant on the frontal cortex. Such abilities include executive functions and aspects of social reasoning. Methods. This study aimed to investigate executive functioning and Theory of Mind (ToM; the ability to reason about mental states, e.g., beliefs and emotions), in 18 patients with TS and 20 controls. A range of tasks involving ToM were used. These required participants to make judgements about mental states based on pictures of whole faces or the eyes alone, reason about humour in cartoons that featured sarcasm, irony or "slapstick" style humour, and make economic decisions. The executive measures assessed inhibition and verbal fluency.
Results. Patients with TS exhibited significantly poorer performance than controls on all four tasks involving ToM, even when patients with comorbid obsessive-compulsive disorder were excluded. These difficulties were despite no inhibitory deficits. Patients with TS exhibited impairment on the verbal fluency task but their performance on executive and ToM tasks was not related.
Conclusions. We propose that TS is associated with changes in ToM. The observed deficits could reflect dysfunction in frontostriatal pathways involving ventromedial prefrontal cortex.
Original article

Monday 9 January 2012

Jess Thom interviewed on BBC Radio 5 Live about PM's Tourette's comment

Touretteshero co-founder Jess Thom talks to Nicky Campbell of BBC Radio 5 Live about David Cameron's Tourette's blunder.
Radio 5 Live Breakfast Interview with Nicky Campbell 9th January 2012 by Touretteshero

Compensatory neural reorganisation in Tourette syndrome

Jackson SR, Parkinson A, Jung J, Ryan SE, Morgan PS, Hollis C, Jackson GM
Compensatory neural reorganization in Tourette syndrome.
Curr Biol 2011 Apr 12; 21(7):580-5.

Abstract: Children with neurological disorders may follow unique developmental trajectories whereby they undergo compensatory neuroplastic changes in brain structure and function that help them gain control over their symptoms. We used behavioral and brain imaging techniques to investigate this conjecture in children with Tourette syndrome (TS). Using a behavioral task that induces high levels of intermanual conflict, we show that individuals with TS exhibit enhanced control of motor output. Then, using structural (diffusion-weighted imaging) brain imaging techniques, we demonstrate widespread differences in the white matter (WM) microstructure of the TS brain that include alterations in the corpus callosum and forceps minor (FM) WM that significantly predict tic severity in TS. Most importantly, we show that task performance for the TS group (but not for controls) is strongly predicted by the WM microstructure of the FM pathways that lead to the prefrontal cortex and by the functional magnetic resonance imaging blood oxygen level-dependent response in prefrontal areas connected by these tracts. These results provide evidence for compensatory brain reorganization that may underlie the increased self-regulation mechanisms that have been hypothesized to bring about the control of tics during adolescence.

Sunday 8 January 2012

Tourette syndrome: dysfunction of limbic & somatosensory "traffic"

Basal ganglia dysfunction in TS:


Abstract: Recent advances in understanding the phenomenology, etiology, pathophysiology, and treatment of Tourette syndrome are discussed. Tourette syndrome appears to involve dysfunction of limbic and somatosensory “traffic” through the basal ganglia, within corticostriatal-thalamocortical circuits. Dynamic alterations in the balance of these inputs may dictate the manifestations (sensory, motor, affective, and behavioral) of the disorder at any given time. Individualized assessment and treatment are the keys to optimal treatment of this condition.
Original journal article

Saturday 7 January 2012

Out of Our Control

Out of Our Control: The Chronicled Lives of Tourette's Syndrome (2012) Video documentary project (trailer):

"this is a trailer for the upcoming Tourette's Documentary that I will be making along with fellow youtubers with TS, and others with TS from around the country and world.... It is not too late to send in your video.... Send in your videos whenever you can! You can just upload your video to youtube whenever you are done or you can e-mail it to me (jspershing93@gmail.com). Either one works! Thanks so much again and just let me know if any questions come up about the video or about making your video. It doesn't have to be too long, but it could be up to 15 minutes probably at the most! Thanks so much again! I have been getting so many people willing to help and make videos and I think this is going to be a really giant awareness video project! Much bigger than I expected thanks to everyone who is willing to help!" 


....dispensingstarlight (YouTube username)

Tuesday 3 January 2012

Distinct structural changes underpin variation in Tourette syndrome

Abstract:


Worbe Y, Gerardin E, Hartmann A, Valabrégue R, Chupin M, Tremblay L, Vidailhet M, Colliot O, Lehéricy S
Distinct structural changes underpin clinical phenotypes in patients with Gilles de la Tourette syndrome.
Brain 2010 Dec; 133(Pt 12):3649-60.



Gilles de la Tourette syndrome is a childhood-onset neurodevelopmental disorder characterized by tics. The clinical heterogeneity of Gilles de la Tourette syndrome has been attributed to the disturbance of functionally distinct cortico-striato-thalamo-cortical circuits, but this remains to be demonstrated. The aim of this study was to determine the structural correlates of the diversity of symptoms observed in Gilles de la Tourette syndrome. We examined 60 adult patients and 30 age- and gender-matched control subjects using cortical thickness measurement and 3 T high-resolution T(1)-weighted images. Patients were divided into three clinical subgroups: (i) simple tics; (ii) simple and complex tics and (iii) tics with associated obsessive-compulsive disorders. Patients with Gilles de la Tourette syndrome had reduced cortical thickness in motor, premotor, prefrontal and lateral orbito-frontal cortical areas. The severity of tics was assessed using the Yale Global Tic Severity Scale and correlated negatively with cortical thinning in these regions, as well as in parietal and temporal cortices. The pattern of cortical thinning differed among the clinical subgroups of patients. In patients with simple tics, cortical thinning was mostly found in primary motor regions. In patients with simple and complex tics, thinning extended into larger premotor, prefrontal and parietal regions. In patients with associated obsessive-compulsive disorders, there was a trend for reduced cortical thickness in the anterior cingulate cortex and hippocampal morphology was altered. In this clinical subgroup, scores on the Yale-Brown Obsessive-Compulsive Scale correlated negatively with cortical thickness in the anterior cingulate cortex and positively in medial premotor regions. These data support the hypothesis that different symptom dimensions in Gilles de la Tourette syndrome are associated with dysfunction of distinct cortical areas and have clear implications for the current neuroanatomical model of this syndrome.

Abstract - External link to original article: Brain

Monday 2 January 2012

Obsessions and compulsions in children with autism or Tourette's

Mack H, Fullana MA, Russell AJ, Mataix-Cols D, Nakatani E, Heyman I
Obsessions and compulsions in children with Asperger's syndrome or high-functioning autism: a case-control study.

Aust N Z J Psychiatry 2010 Dec; 44(12):1082-8.


"To compare the clinical characteristics and symptom severity of children with obsessive disorder (OCD) plus autism spectrum disorders (ASD) with those of children with OCD plus Tourette's syndrome (TS) or OCD alone.Children with OCD and ASD (OCD/ASD) (n = 12, mean age = 14.33, range: 12-18) were compared to children with OCD and TS (OCD/TS) (n = 12, mean age = 13.92, range: 9-17) and children with OCD-alone (OCD) (n = 12, mean age = 12.92, range: 9-17) on measures of obsessive-compulsive (OC) symptom frequency, severity, interference and other clinical variables.Patients from the OCD/ASD group rated their OC symptoms as equally distressing, time consuming and contributing to a similar level of interference in functioning as patients in the OCD/TS and OCD groups. The types of symptoms were similar across groups but patients with OCD/TS reported greater frequency of ordering and arranging compulsions, and a trend towards more sexual obsessions. Patients with OCD/ASD reported more peer relationship problems compared with the other two groups.Children with ASD may experience a similar level of impairment from OC symptoms as children with TS plus OCD and children with OCD only. It is suggested that it is useful to establish both diagnoses given that obsessions and compulsions may respond to treatment, and their alleviation may improve functioning in children on the autism spectrum."

Abstract quotation copyright: Medline. External links: Abstract Journal Article

Sunday 1 January 2012

Brad Cohen, talks about his struggle to become a teacher

Brad Cohen, award-winning teacher, author, motivational speaker and Tourette's advocate talks about his struggle to become a teacher having grown up with the neurological disorder Tourette Syndrome. He travels to Britain to help improve awareness in schools about the special educational challenges faced by children with the disorder. Teachers in Britain receive little training about disorders such as Tourette's (and autism) and the related educational needs of students. Understanding of Tourette's and other related conditions in British schools, colleges and universities is consequently low and resource allocation/adjustments to reduce disadvantage for students in the classroom are correspondingly few.