'Rules' and Tourette Syndrome

For children with Tourette Syndrome, in the classroom, following & understanding 'Rules' may be one of their greatest challenges! Impulsiveness, compulsions and obsessions, attention deficit, reactivity, problems with conversational turn-taking/reciprocity, vocal tics and many other Tourette's behaviours may cause difficulty and frustration in the structured and often 'low-tolerance' environment of the classroom and school. The effort and stress that results from trying to conform to sometimes bewildering, and often inflexible, rules can be an additional source of great anxiety that compounds that due to suppressing and hiding involuntary tics. Increased stress may have a very significant impact on the severity of tics and other Tourette symptoms placing a child with TS at even further educational disadvantage. Clearly rules and procedures are an essential part of the smooth running of schools and managing children's education in a classroom setting however teachers, if they are to successfully 'include' a child with TS will have to find a balance in allowing more flexibility for that child while maintaining overall class discipline. Achieving fairness may be a challenge as other children may not understand rules being applied differently to different students. If the child (and their parents) are willing, an informative talk or video presentation on TS and what it is may be very helpful. You can find links on the 'Resources' page to some useful information. One approach that has proven extremely inappropriate in all cases is that of continual and consistent admonishment of the child with TS. Often just 'not reacting' (especially negatively) to vocal tics and other TS behaviours helps diffuse, and avoid increasing, stress for the child and, surprisingly, other members of the class will rapidly accept and understand once they have had TS explained to them.
Teaching/educational resources
TSA Youth Ambassador video/presentation
Brad Cohen visits a UK school


A fictional but realistic portrayal of a TS child responding to the 'Rules'  
Courtesy of THINKFilm Co.

Microstructure assessment of grey matter nuclei in adult Tourette patients

Neuner I, Kupriyanova Y, Stöcker T, Huang R, Posnansky O, Schneider F, Shah NJ
Microstructure assessment of grey matter nuclei in adult Tourette patients by diffusion tensor imaging.
Neurosci Lett 2011 Jan 3; 487(1):22-6.

The onset of TS occurs during childhood; many patients experience a subsequent reduction of tic frequency and severity suggesting that the pathways involved play a significant developmental role. Research has mainly focused on the cortico-striato-thalamo-cortical circuit, but clinical symptoms and recent neuroimaging studies suggest the involvement of limbic structures as well. We acquired diffusion-weighted data at 1.5 T in fifteen adult patients fulfilling the DSM-IV-TR criteria for TS and in a healthy control group. Based on the Harvard-Oxford subcortical structural atlas we investigated the microstructure of grey matter nuclei such as the nucleus accumbens, the amygdala, the putamen, the pallidum and the thalamus. The basal ganglia and the thalamus show in the direct comparison between patients and control subjects no significant differences in the diffusion indices. However, within the Tourette group the correlation coefficients between diffusion parameters and measures of tic severity indicate that the individual microstructure of the basal ganglia has an influence on the individual clinical phenotype. The microstructure assessment of the amygdala and nucleus accumbens in TS revealed a significant difference for the left nucleus accumbens and the right amygdala. Our findings suggest two pathophysiologic patterns in TS. One pattern could indicate altered connectivity based on the correlation between the increased mean and axial diffusivity in the basal ganglia and tic severity. The other pattern is characterized by the increase in radial diffusivity in the amygdala and the correlation between radial diffusivity in the nucleus accumbens and tic measures indicating potentially altered myelination.


Abstract Copyright: Medline

Influence of sympathetic autonomic arousal on tics

Nagai Y, Cavanna A, Critchley HD
Influence of sympathetic autonomic arousal on tics: implications for a therapeutic behavioral intervention for Tourette syndrome.
J Psychosom Res 2009 Dec; 67(6):599-605.

The pharmacological treatment of Tourette syndrome (TS) has improved due to the application of new medications and combinations of medications, coupled to greater phenomenological and neurobiological understanding of the condition. Nevertheless, for many individuals with TS, potentially troublesome tics persist despite optimized drug treatment. Anecdotally, a relationship is frequently described between tic frequency and states of bodily arousal and/or focused attention. The galvanic skin response (GSR) is an accessible and sensitive index of sympathetic nervous activity, reflecting centrally induced changes in peripheral autonomic arousal. Sympathetic nervous arousal, measured using GSR, has been shown to have an inverse relationship with an electroencephalographic index of cortical excitability (slow cortical potential), and GSR arousal biofeedback shows promise as an adjunctive therapy in management of treatment-resistant epilepsy.We examined how changes in sympathetic arousal, induced using GSR biofeedback, impact on tic frequency in individuals with TS. Two different physiological states (sympathetic arousal and relaxation) were induced using GSR biofeedback in 15 individuals with a diagnosis of TS. During both biofeedback sessions, participants were videotaped to monitor the occurrence of tics.We observed significantly lower tics during relaxation biofeedback compared to arousal biofeedback, with tic frequency positively correlating with sympathetic arousal during the arousal session.These findings indicate that the conjunction of focused attention to task and reduced peripheral sympathetic tone inhibits tic expression and suggests a potential therapeutic role of biofeedback relaxation training for tic management in patients with TS.

Abstract Copyright: Medline

Shane Fistell: A Portrait of Tourette Syndrome

Shane Fistell: A Portrait of Tourette Syndrome


An insightful and moving portrayal of a remarkable man and a much misunderstood disorder. Shane Fistell has been featured in several documentaries about TS, appeared in movies, is an active TS advocate and an accomplished painter and sculptor. Shane does not usually hide his 'symptoms' or take medication but allows full expression of his condition through his life and art. He has an extraordinarily 'tactile' and direct connection to his environment.


Due to problems with embedding IMDB videos, use the vertical scroll bar to centre the video and view player controls >



More documentary video material about Shane: http://tsfocus.blogspot.com/2011/10/video-documentary-films-about-tourette.html

Christmas and Holiday Wishes to 

all our followers and supporters :)

Tourette Syndrome: the self under siege

Leckman JF, Bloch MH, Scahill L, King RA
Tourette syndrome: the self under siege. [Journal Article, Research Support, N.I.H]
J Child Neurol 2006 Aug; 21(8):642-9.

"Tourette syndrome is a neurodevelopmental disorder characterized by motor and vocal tics--rapid, repetitive, stereotyped movements or vocalizations. Tourette syndrome typically has a prepubertal onset, and boys are more commonly affected than girls. Symptoms usually begin with transient bouts of simple motor tics. By age 10 years, most children are aware of nearly irresistible somatosensory urges that precede the tics. These urges likely reflect a defect in sensorimotor gating because they intrude into the child's conscious awareness and become a source of distraction and distress. A momentary sense of relief typically follows the completion of a tic. Over the course of hours, tics occur in bouts, with a regular intertic interval. Tics increase during periods of emotional excitement and fatigue. Tics can become "complex" in nature and appear to be purposeful. Tics can be willfully suppressed for brief intervals and can be evoked by the mere mention of them. Tics typically diminish during periods of goal-directed behavior, especially those that involve both heightened attention and fine motor or vocal control, as occur in musical and athletic performances. Over the course of months, tics wax and wane. New tics appear, often in response to new sources of somatosensory irritation, such as the appearance of a persistent vocal tic (a cough) following a cold. Over the course of years, tic severity typically peaks between 8 and 12 years of age. By the end of the second decade of life, many individuals are virtually tic free. Less than 20% of cases continue to experience clinically impairing tics as adults. Tics rarely occur in isolation, and other coexisting conditions--such as behavioral disinhibition, hypersensitivity to a broad range of sensory stimuli, problems with visual motor integration, procedural learning difficulties, attention-deficit hyperactivity disorder (ADHD), obsessive-compulsive disorder, depression, anxiety, and emotional instability--are often a greater source of impairment than the tics themselves. Emerging behavioral treatments of Tourette syndrome are based in part on an understanding of the moment-to-moment experience of somatosensory urges and motor response. With identification of specific genes of major effect and advances in our understanding of the neural circuitry of sensorimotor gating, habit formation, and procedural memory--together with insights from postmortem brain studies, in vivo brain imaging, and electrophysiologic recordings--we might be on the threshold of a deeper understanding of the phenomenology and natural history of Tourette syndrome."

Abstract quotation © J Child Neurol. External link: Full Article (requires subscription)

Bullying No Way with Jaylen Arnold, Robin Arnold and Actor Dash Mihok

Meet Jaylen Arnold, a boy with Tourette Syndrome who is 'stomping the stigma' and creating a campaign "Bullying No Way." An incredible kid with an amazing mum are joined by acclaimed actor Dash Mihok a mentor, supporter and advocate.

 

Or view on Coffee Klatch page: LINK

Listen to internet radio with The Coffee Klatch on Blog Talk Radio

Ruth Ojadi in 'I Swear I Can Sing' BBC3 Documentary

At 25, Ruth Ojadi had an amazing singing voice and a place to study music at university. She should have been on her way to the top. Instead, Ruth was diagnosed with Tourette's Syndrome and her life fell apart. The blinks and twitches her GP had put down to nerves became worse and before long she started swearing and blurting out inappropriate comments, eventually dropping out of university and locking herself away. Now, three years on, Ruth has decided to take her life back and once again step up to the mic, but when a trip to the supermarket is such a struggle how will she cope with getting up on stage?


BBC iPlayer View Online (now expired) http://www.bbc.co.uk/iplayer/episode/b018cqgl/Tourettes_I_Swear_I_Can_Sing/


YouTube: http://www.youtube.com/watch?v=KTEY84SwJFY 
To see all parts click 'watch on YouTube'

Tourette Syndrome: information for school nurses.

Golder T
Tourette Syndrome: information for school nurses. [Journal Article]
J Sch Nurs 2010 Feb; 26(1):11-7.

Tourette Syndrome (TS) is a neurobehavioral disorder that consists of simple and complex tics. This disorder can significantly affect a child's self-esteem and academic success. Although some believe that only adults are affected, this disorder occurs most frequently in early childhood and symptoms decrease with age. Diagnosis of this disorder can be difficult due to the high incidence of comorbidity of other psychiatric illnesses, such as attention-deficit hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD), bipolar disease, and depression. Early recognition of the disorder allows positive interventions geared toward controlling tics and provides an outlet for tic release. Children and families who are affected by the disorder may attempt to hide the behaviors due to embarrassment of tics. The school nurse is instrumental in working with parents, staff, and other children to assure understanding of the disorder, provide coordination of care, and provide a safe outlet for the child to release the stress of tics during the school day.


Abstract © Medline

Thinning of sensorimotor cortices in children with Tourette syndrome.

Sowell ER, Kan E, Yoshii J, Thompson PM, Bansal R, Xu D, Toga AW, Peterson BS
Thinning of sensorimotor cortices in children with Tourette syndrome. [Journal Article, Research Support, N.I.H]
Nat Neurosci 2008 Jun; 11(6):637-9.

The basal ganglia portions of cortico-striato-thalamo-cortical (CSTC) circuits have consistently been implicated in the pathogenesis of Tourette syndrome, whereas motor and sensorimotor cortices in these circuits have been relatively overlooked. Using magnetic resonance imaging, we detected cortical thinning in frontal and parietal lobes in groups of Tourette syndrome children relative to controls. This thinning was most prominent in ventral portions of the sensory and motor homunculi that control the facial, orolingual and laryngeal musculature that is commonly involved in tic symptoms. Correlations of cortical thickness in sensorimotor regions with tic symptoms suggest that these brain regions are important in the pathogenesis of Tourette syndrome.


Abstract © Medline

Marc Elliot - 'Live and Let Live' Live presentation: TED

Marc Elliot has a book coming out in January 2012 'What makes you tic?'


'Marc attended Washington University in St. Louis, where he majored in biology and pursued a pre-medicine path in hopes of following the footsteps of the pediatric surgeon who saved his life. Upon graduating in May of 2008, Marc embarked upon a speaking tour around the nation. It was just something to do before he became a doctor. His subject was tolerance.

In his presentation, "What Makes You Tic?," he took his experiences of not fitting in, of not feeling comfortable with others, to discuss fundamental lessons about tolerance—how to live with our own, and others' differences. Little did he know this would become his calling.

Over the past three years, he has spoken to hundreds of groups and organizations, reaching out to over 75,000 individuals in the US and internationally. At the age of 26, Marc has now found a way to use his own story, and his triumph over handicaps as a way of helping individuals around the world overcome think about tolerance in a new light.'

Response to emotional faces in Tourette's patients

Neuner I, Kellermann T, Stöcker T, Kircher T, Habel U, Shah JN, Schneider F
Amygdala hypersensitivity in response to emotional faces in Tourette's patients. [Journal Article, Research Support, Non-U.S. Gov't]
World J Biol Psychiatry 2010 Oct; 11(7):858-72.

Tourette's syndrome is characterised by motor and vocal tics as well as a high level of impulsivity and emotional dysregulation. Neuroimaging studies point to structural changes of the basal ganglia, prefrontal cortex and parts of the limbic system. However, there is no link between behavioural symptoms and the structural changes in the amygdala. One aspect of daily social interaction is the perception of emotional facial expressions, closely linked to amgydala function.We therefore investigated via fMRI the implicit discrimination of six emotional facial expressions in 19 adult Tourette's patients.In comparison to healthy control group, Tourette's patients showed significantly higher amygdala activation, especially pronounced for fearful, angry and neutral expressions. The BOLD-activity of the left amygdala correlated negatively with the personality trait extraversion.We will discuss these findings as a result of either deficient frontal inhibition due to structural changes or a desynchronization in the interaction of the cortico-striato-thalamo-cortical network within structures of the limbic system. Our data show an altered pattern of implicit emotion discrimination and emphasize the need to consider motor and non-motor symptoms in Tourette's syndrome in the choice of both behavioural and pharmacological treatment.

Abstract: Copyright - Medline

Sensory, motor, affective, and behavioural issues in TS

Kimber TE 
An update on Tourette syndrome. [Journal Article, Review]
Curr Neurol Neurosci Rep 2010 Jul; 10(4):286-91.


Recent advances in our understanding of 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.

Abstract: Copyright - Medline

Tommy Bryan helps battle Tourette’s with poetry

A poem written by teenager Tommy Bryan, with hopes that others can relate to it. From Teens4Tourettes: 
"I am the wolf that howls in the night .... "
http://www.njcts.org/teens4ts/boy-helps-battle-tourettes-with-poetry/

NJCTS - TS Parents Blog now online

TS Parents Online Blog (New Jersey Centre for Tourette Syndrome) NJCTS http://www.njcts.org/tsparents/

"Life's a Twitch" - Documentary about Duncan McKinlay, a man with Tourette Syndrome.

"This short documentary is a quirky ride into the world of Duncan McKinlay, a man with Tourette Syndrome. At 7 he noticed what he called a devil in his head that made his life hell. In his teens, it wasn't a question of whether to kill himself, but when. At 19, when he was finally diagnosed, Duncan made researching TS his life path. He's come to understand that his strange tics are release triggers for the high energy charging through him. At 27 he's a virtuoso at channelling this energy. He's just finished a doctorate in psychology. He's in nationwide demand for his workshops that enlighten and boost the spirits of the 100,000 across Canada who have Tourette's." .... NFB.ca





http://www.nfb.ca/film/lifes_a_twitch/ (DVD available)

Rambert Dance Company: Awakenings

The London-based, Rambert Dance Company, has created a contemporary ballet based on the writings of the neurologist Oliver Sacks featuring the music of composer Tobias Picker http://www.rambert.org.uk/awakenings/media

"Created by the very busy Aletta Collins, Awakenings was commissioned and energised by Daniel Katz, a Rambert sponsor. He and Tobias Picker, the American composer for the piece, were introduced to each other by Sacks. Both Katz and Picker had grown up with Tourette’s syndrome, its physical tics being similar to those of the Awakenings patients. Music gave the patients a tempo and some control....


Awakenings is an essay in damaged cognition. Eight patients each emerge from tragic stillness to a consciousness characterised by awkward tics and wild or overly slow movements....


Picker’s score has soulful emotion mixed with strident, eerie phrases. Picker, incidentally, was once an accompanist for Martha Graham...."
                              
                                                    extract from review by Kevin Berry: THE STAGE


http://www.thestage.co.uk/reviews/review.php/29684/the-awakenings-tour-hush-rainforest-

How We Met: The neurologist, Dr Oliver Sacks and composer, Tobias Picker

'How We Met': Oliver Sacks the renowned neurologist and writer and Tobias Picker, classical music and opera composer, tell their story


Article from the Independent 2010 http://t.co/bl2kzC2F

Conditional Publications - For Writers with Neurological Disorders, OCD, autism, Tourette's, ADHD & more


Find out more about Conditional Publications, read other's submissions and how to submit your writing for consideration:  Conditional Publications

TS assoc with ADHD clinical response to SSRI and Ritalin

Tourette syndrome associated with attention-deficit hyperactivity disorder: satisfactory clinical response to selective serotonin reuptake inhibitor and methylphenidate | J. bras. psiquiatr. vol.59 no.2 Rio de Janeiro  2010 [LINK]

The Genetics of Gilles de la Tourette Syndrome

David Pauls discusses the results of the largest genetic linkage studies yet undertaken for Tourette Disorder. From the M.I.N.D. Institute Lecture Series on Neurodevelopmental Disorders, 2007

Dr Temple Grandin: My experience with autism

In this lecture recorded at UCDS in 2007, Dr Grandin talks in detail about living with autism, the nature of autism and talks extensively about neuro-developmental sensory issues. Many of the sensory issues she touches upon are equally relevant to Tourette Syndrome. From the "M.I.N.D. Institute Lecture Series on Neurodevelopmental Disorders"

Too many disorders? - Shared Symptoms

Always be aware that symptoms do not belong exclusively to one 'disorder' or another. Symptoms are shared, often by many different conditions. A runny nose does not automatically indicate that you have a 'cold'. In the field of Tourette Syndrome and autistic spectrum disorder (ASD), there is a considerable tendency to cherry-pick or fence-off groups of symptoms in order to introduce another disorder - a disintegrative approach. This is very characteristic of many psychology-based and reductionist paradigms in investigating neurological/neuro-developmental behaviours.

Obsessions/obsessive-thinking are characteristic of autism, TS and obsessive-compulsive disorders. Compulsions are characteristic of TS, OCD and ASD (if tics and other behaviours were not compulsive they would not be carried out when there is a prior-awareness of them). But having these symptoms does not automatically point to a diagnosis of OCD. They are all disorders with shared symptoms but indeed may have hitherto poorly understood connections. The acknowledged complex interplay between TS, OCD/OCB, ASD, SPD, ADD etc. has been represented by many, in pictorial form, by interlocking Venn diagrams. Symptoms of sensory integration difficulties are also common in many disorders but do not always mean an individual has SPD as they are also often intrinsic to autism, TS and ADD/ADHD as are attention deficit symptoms. 'Experts' are often keen to give greater substance to 'separate' disorders for obvious reasons or because they can build a niche for themselves within a separate field or provide therapeutic regimes and curative treatments for commercial gain. Experts are prone to the same failings as us all, and collecting degrees, diplomas, placing letters before or after their name and advertising other honours does not always confer greater understanding or insight nor always save them from much-cherished dogma. Evidence and a willingness to remain open to new ideas must always be the prime consideration of credible scientific and medical endeavour.


People with neuro-developmental disorders often do not fit neatly into a 'diagnostic box' and so often end up being diagnosed with a plethora of different disorders. It may be more realistic to view such individuals has having a mosaic of characteristics that are an expression of a single underlying integrated developmental anomaly. The more integrative spectrum concept, which is frequently used in association with autism, provides a more workable and flexible approach than the poly-diagnostic disintegrative perspective. Different attributes or parameters that control or determine neuro-cognitive functioning may occur with different levels of functionality in different individuals. An analogy might be looking at the preferences section of a piece of computer software that controls the parameters that determine overall functioning.

Sensory Processing Difficulties

Difficulties with sensory integration (now often referred to as sensory processing 'disorder' or SPD) are common in individuals with Tourette Syndrome or autistic spectrum disorders (ASD). These difficulties are of particular importance to educational progression and in speech, language and social development and functioning. Although recognised by educators (and educational psychologists) as a separate 'disorder' in the case of SPD and as a comorbidity in ASD, there is a poorly-understood reluctance to acknowledge this in Tourette Syndrome, a neuro-developmental disorder as common as ASD.


Most people are aware of the tendency for autistic individuals to not look at other people's eyes (the oft used phrase here is 'look into'). There is much confusion about the causes of this behaviour but an unwillingness to listen to what those with the disorder say about it. There is a similar tendency in TS. Studies have shown that, in many autistic subjects, when their eye movements and gaze direction are tracked digitally, they tend to focus more on the mouth than the eyes. A significant part of this mouth-directed visual preference is due to the individual needing to watch the lips of a speaker in order to improve their understanding of speech as they may have difficulties with comprehending speech through audible sensory input alone. This is of course well-known among people with deafness. 


An individual who shows a reluctance to look into your eyes, is therefore, not always shying away from 'social contact' as is often thought (because they are autistic). In autism there do appear to be difficulties also with the intensity of mutual visual-gaze which appears to induce an overly intense emotional response in some. There is also evidence that some individuals with sensory integration problems may find the continual movements of other's eyes to be a source of sensory stress. Those with TS and/or SPD may also seem to avoid eye-gaze because they are lip-gazing.


Many special educational needs teachers will persistently tell an autistic child "look into my eyes when I'm talking to you" and to further compound the transgression by doing the immensly annoying (to the child) gesture of pointing to their own eyes with their two forked fingers! It really is not helpful to the SEN child with these difficulties to undergo considerable effort and frustration in attempting to comply with this seemingly pointless and inconvenient requirement. Perhaps it's so others wil be able to say 'look how he/she is progressing' they have much better eye contact now! It is rather like the insistence that used to be prevalent in many schools for the deaf when they forbid the use of sign language (this was almost universal at one time) in order to'encourage' the child to learn to speak verbally, purely for the convenience of other 'hearing' individuals who did not wish to learn sign languages or were unwilling to provide the necessary accommodations to properly 'include' deaf children. This is not merely an issue of arrogance. For many children it removed the best channel for rapid development of communication and learning with the result that many deaf children became severely 'learning delayed'. More importantly, for many, they did not develop their speech and language abilities sufficiently during the normal period of early neuro-developmental plasticity of the brain which, once passed, precludes ever fully achieving their original language potential and thus experienced an impairment throughout their lives.


Another aspect of sensory processing difficulties in children with ASD, TS and also 'ADD' is that they may find it difficult to hear well when they are exposed to other ambient sounds or visual input (this may also apply to the tactile sense). Conversely they may not be able to read if you are talking or process visual input effectively. This raises specific concerns about the over-use of IT and audio-visual teaching aids which may represent a 'sensory onslaught' to such indivivuals. Another often-ignored problem is the use of low-frequency (50-60Hz) flourescent lighting in the teaching environment or at home. To an individual with SP difficulties these can represent something akin to a disco stroboscope as they can often perceive the flickering. The same problem arises with using many desktop computer screens that contain flickering light sources. Television with low screen refresh rates may also represent a source of sensory over-stimulation. Experiments in schools that involved removing standard flourescents and replacing them with high-frequency (300Hz) versions resulted in improvements for many SEN children but, more remarkably, improved 'behavioural' problems in the non-SEN children also! For children with these difficulties, replacing the lighting in the area where they study (and live) may bring benefits. Incandescent lights are a cheap option in bedrooms and for desklights for homework etc. The impact of newer LED lighting has not been properly evaluated in this context. Laptop computers and tablets tend not to have flickering screens although for many their expense is an issue. A big problem for older individuals with sensory disabilities, is that although many assistive and useful technologies are now available, they often have considerably fewer (or no) opportunities for earning even a living wage and for purchasing those technologies (iPads have been used with great success in helping with several neuro-developmental disorders including autism but many families cannot afford them). For those with TS and sensory problems computers may not always help. Keyboards in particular may present difficulties. Unlike handwriting where the action is direct - the text appears immediately at the tip of the pen precisely where they are looking, keyboards involve selecting and pressing multiple keys in a different position and plane to the text being produced. Many people have finger tics and obsessive-compulsive behaviours that are provoked or exacerbated by a "tray full of plastic buttons" and a mouse and also the complexity of the many buttons and menus of the software itself. Normal computer monitors are 'backlit' which may also reduce the ability to read for some with sensory difficulties. The latter are often actually better able to read from paper/printed media or from newer eReaders (such as Sony Reader or Kindle) which use a non-illuminated background and well-defined eInk text.


For the child with Tourette Syndrome their sensory difficulties are compounded immeasurably by having to suppress or control their tics during class or examinations where they are expected to sit still and quietly for extended periods, a 'tall order' in itself. They will often concentrate so hard on achieving this that they will not be able to focus their attention on the task at hand, read written material or listen to the teacher effectively or more importantly perform academic tasks effectively. They will certainly learn little. 


Dr Temple Grandin talks extensively about sensory difficulties in the first section of her lecture (view here). She has high-functioning autism, is an accomplished academic and is able to articulate her ideas with great clarity and eloquence.


Other topics/tags relevant to this article: non-verbal learning difficulties, low-latent inhibition, obsessive thought behaviours, complex tics, sensory defensiveness

OCD Awareness Week 2011 October 10-16

2011 OCD Awareness Week Event "A Night to Believe" October 15 http://www.ocfoundation.org/awareness2011/


The International OCD Foundation: http://ocfoundation.org/ocdinkids/
'....Founded by a group of people with OCD in 1986, the International OCD Foundation (IOCDF) is an international not-for-profit organization made up of people with Obsessive Compulsive Disorder (OCD) and related disorders, as well as their families, friends, professionals and others....'

CNN article: OCD in children: 'A darkness has overtaken me' http://edition.cnn.com/2011/10/11/health/ocd-kids-website/?hpt=he_c1


'OCD' in Tourette Syndrome (OCB)
Diagnosis and understanding of TS

Obsessive-Compulsive Behaviour

Teaching and Educational Resources for Tourette Syndrome

Books: 

• Concise and well-written introductory text to TS | 'Tourette Syndrome: The Facts' Mary Robertson & Simon Baron-Cohen | ISBN 0-19-852398-X
• 'Teaching the Tiger' M. Dornbush The best practical reference book for educators working with students who have Tourette Syndrome, ADD, and/or OCD/OCB | ISBN 978-1878267344

Links:

• Tourette Syndrome Association of Australia TSAA have produced an excellent video podcast on how to approach  TS in a school or classroom setting (available in several formats): http://www.tourette.org.au/tsaa%20podcast.html

• Tourette Syndrome is 'more than tics' a very informative guide from the TSA by specialist educator, Kathy Giordano: Available online: http://www.tsa-usa.org/aeduc_advoc/morethantics.htm TSA also provide a wealth of other resources, materials and valuable information for teaching students with TS: http://www.tsa-usa.org/aProfessionals/ProfEducators/educators.html

• The US National Tourette Syndrome Association, TSA initiated a "Youth Ambassador" Programme which trains young people to talk about TS and gives them the preparation they need to "speak about TS before their peers...." Youth Ambassadors frequently give presentations in schools to help improve understanding of TS and the educational needs of those who have TS. TSA provides a video (download) and online materials: http://www.tsa-usa.org/aPeople/Youth/YouthAm.htm

• Words from a teacher of a child with TS (6 video clips): http://video.tourette.ca/index.php?entry_id=5890 (Tourette Syndrome Foundation of Canada)

• Brad Cohen, an award-winning teacher with Tourette Syndrome travels to a British school to help raise TS awareness. Video: http://bit.ly/xoj0ke

• 'An Education in Education' - Dr B. Duncan McKinlay (An Educational Psychologist with TS) http://www.tourette.ca/resources-newsletters-tgl.php?entry_id=6873

• Educational approaches and difficulties - talk by Kathy Giordano (educational specialist and mother of a son with TS) - makes reference to US 504/IEP plans but still mostly relevant to UK educational provision and statementing /IEPs and the needs of students with Tourette Syndrome. Video: http://www.tsa-usa.org/ZEdDVD/2_01_504andIEPs/504_and_IEP_2_01.html

Advice: Some bullet points!

• Recognise any difficulties the student may have by educating yourself about TS and being aware of the challenges TS can pose to the learning process
• Don't continually admonish a student for having 'tics' - it is pointless and, more importantly, very stressful for the student and sets a very bad example to classmates
• Recognise that a student may need to leave the classroom when their tics are troubling them or they are becoming stressed due to suppressing/hiding their symptoms. If necessary have a pre-arranged signal for the student so they can leave without asking
• Some individuals with TS have polyuria and need to make frequent bathroom (toilet) visits. They should be permitted to do so when required
• Invite the student to give a presentation to the class (see the TS ambassador section above) if they feel comfortable or confident in doing so. If not ask their permission for the class to devote time to learning about TS (similar disorders can be included here too) or give a lesson or show a video presentation
• Always be aware that a student with TS may have difficulties in following teaching given through certain media or in a busy environment. They may experience NLD which slow their 'non-verbal' abilities
• Many will require additional time during assessments or benefit greatly by being able to sit apart (e.g. in a separate room) so they are not continually worrying about their tics disturbing other students. Imagine what it is like to have TS and have to sit for an extended period, still and quiet in a room/hall filled with students concentrating hard where the slightest disturbance is heard or detected by all.
• Where a child or student sits in the classroom can be extremely important. This should involve determining their specific needs. Many people with TS are very unsettled and become anxious when they have other people sitting behind them and tend to prefer being at the back or to the side or in a corner position. Sensory issues must be considered also and a student may need to sit where they are best able to follow the lesson and hear the teacher/lecturer clearly. Some students may, additionally, need to be able to lip read in order to better understand what is said especially when other ambient background noise levels or visual stimuli are high. They may not be able to read and take notes effectively when you are talking. Seating is especially important in written examinations and may affect their performance and stress levels.
• Children (and older students) with obsessive compulsive behaviours (OCB is very common as a part of TS) may need more time in completing tasks and 'real-time' assignments. This may include taking longer to organise themselves, getting from one class to another, getting ready for sports activities and in initiating new activities and assignments.
• Students with TS need somewhere to study. It may not occur to you but most cannot just go and work in the library as other students do. Libraries can be a nightmare for students with TS as noise, movements and disturbance are not tolerated unless your library has particularly lax rules. The availability of a separate study room/area is the solution, preferably without flourescent lighting.
• Unlike the approach usually taken for students with dyslexia or ASD, not all students with Tourette Syndrome will benefit from using computers for academic assignments, many are better at writing by hand and reading from paper media. Another important consideration with keyboard use is the challenge presented by obsessive and compulsive behaviours and sensory processing issues in TS. Keyboards may provoke unique difficulties for some individuals. Some students with TS will be placed at a significant disadvantage if there is an insistence that they may only use information technology rather than traditional paper-based methods of fulfilling academic assignments.
• Many children with TS have 'untidy' writing - which for some is eventually resolved as their skills and development progress but may persist. Some students with TS may additionally, have dyslexia or dysgraphia which can influence reading and/or writing abilities. Dysgraphia will also cause difficulties with producing both text and drawing on paper. Both conditions may affect IT skills.
• Do not humiliate a student in front of their peers with respect to their 'disorder' - show sensitivity by avoiding stereotypical comments and generalisations about their disability (or any other disability that may affect other students). Individuals with TS often lack self-confidence and are acutely sensitive to criticism. They do not choose to be born with a lifelong condition and must be allowed to feel comfortable in the classroom and in the presence of teachers and staff who have authority over them.  Do not refer to TS as a 'mental illness' - this is a common misconception that often prevails among teaching staff at schools and universities (and a frequent cause of stigmatisation and bullying). It is a neurodevelopmental disorder, as is cerebral palsy, not an illness and does not have a psychological origin. 
• Evidence shows that those with TS respond strongly to positive feedback. When an opportunity for acknowledgment of a student's efforts and good work arises, take it, it will help increase self-confidence and self-belief more than you can imagine
• Although, like everyone, individuals with TS can be intentionally disobedient, disruptive and obstinate, be very aware that most with TS try very hard to 'follow the rules' but are not well-equipped for doing so and much of their behaviour is 'unintentional', embarrassing to them and not a true reflection of the way they are inside
• Children with TS should not be automatically excluded from class and other school activities because they have a disability or may be inconvenient to have around. Although the needs of all pupils must be considered, there is usually a work-around that will help the child with TS to be included in class activities.
• As a teacher you are in a unique position to influence the quality of the learning experience for a student with TS and to help encourage awareness and acceptance among other class members. Try to avoid initiating a 'bullying' or adversarial environment. Others will take your cue and follow suit. Although we like to believe this unthinkable, students have reported 'bullying' by teachers (all too frequently). For some this has proved to be one of the worst and most debilitating experiences in their development and much more difficult to rationalise about than that carried out by peers. It goes without saying that peer-to-peer bullying is one of the greatest challenges a child with TS will face (almost all are bullied at school) and must be identified and stopped when it occurs.
• All these issues are not always unique to TS. They can be equally relevant to many other neuro-developmental disorders such as autism, cerebral palsy, LD, SPD etc., physical disabilities and also conditions such as depression and anxiety. Also bear in mind that some of this advice is not just a matter of doing the best for your students, it can be a matter of law and any actions you take may require subsequent explanation and justification within the frame-work of the relevant National Disability Discrimination/Equalities Acts which all contain strict guidelines on educational provision and describe implicit obligations to ensure equality and reduce disadvantage.

Video documentary films about Tourette Syndrome (regularly updated)

"Different is the New Normal" 2011 A teen with Tourette Syndrome, Ariel Small | Thirteen PBS | A sensitive and insightful portrayal of growing up with TS and wanting to help others overcome the challenges of TS: Watch the full documentary online. As near perfect as such a documentary could be. Avoids usual stereotypical pitfalls of reporting accurately on TS. Link to full documentary: View Here


From Dr Oliver Sacks' series, 'The Mind's Eye' which featured a documentary about Shane Fistell an artist with Tourette Syndrome who does not take medication or hide his 'symptoms' but allows full expression of his condition through his life and art. Dr Sacks, the renowned neurologist, has extraordinary empathy and understanding and describes TS with great insight by exploring the existential aspects of TS beyond just tics. Video: http://www.youtube.com/watch?v=ljX1rsMNA34



'I have Tourette's but Tourette's doesn't have me' HBO/TSA documentary that helps increase understanding and awareness of Tourette Syndrome in children. A moving and positive portrayal that has been used with great effect to help educate teachers, parents and other children about living with the disorder and the difficulties it represents. Copies are available from the TSA (www.tsa-usa.org)

Tourette's Uncovered: YouTube (in 3 parts): http://www.youtube.com/watch?v=KwwR2rrLmUE

'Movements and Madness': Shot over the course of 8 years. Documentary follows the life of Gusti Ayu, a young Balinese woman suffering from severe Tourette’ syndrome. Born into a society with no local name for her disorder, Gusti’'s chronic, socially awkward jerking, spitting, and swearing are seen as evidence that she either wants attention or is simply crazy. 70 mins. By Dag Yngvesson, Robert Lemelson Lemyng Films, 2006. Current availability unknown.


'Bird Dancer' has been released recently and tells the story of Gusti Ayu's struggle for acceptance in Balinese society. 41 mins. Made by Robert Lemelson. Preview at: http://www.youtube.com/watch?v=xjQKHS-S8gs 
Purchase at : http://www.der.org/films/bird-dancer.html or http://www.amazon.com/Bird-Dancer/dp/B004QPHZEE/ref=sr_1_1?ie=UTF8&qid=1318439817&sr=8-1 (Can watch in instant view also).

'Twitch and Shout' a great documentary made about people with TS, featuring Lowell Handler (author of the book by the same name). Lowell talks about his own TS and travels across the US and Canada meeting others who live with the disorder. Unfortunately the film appears not to be in circulation now but much of it is available Here (2 parts) although the ending is missing and the quality is not perfect. If anyone is aware of copies of this documentary, still available anywhere, please let us know.


'I Swear I can't Help It'. A British documentary about the life of John Davidson which follows on into his adult life, continuing his story since the earlier documentary 'John's Not Mad' which covered the challenges he faced during a childhood with Tourette Syndrome. John has many overt vocal tics and has copralalia a rare form of vocal tic behaviour which is a source of much stress to him in growing up with the disorder. A gritty documentary that show it how it is. Available on YouTube in HD: http://www.youtube.com/watch?v=vnyTMzQ76WA

Hidden Lives | Tourette's on the Job | Explores the challenges of making a life and career with Tourette Syndrome. Follows the lives of several individuals in Britain and the US and contrasts the differing attitudes to allowing people with the disorder to work between the two countries and shows how much more effective is US Disability Discrimination Law (ADD) and active advocacy. Also features Brad Cohen who visits the UK to help improve the attitudes and understanding in schools there.


'Mad But Glad' British TV documentary featuring the accomplished classical pianist, Nick van Bloss. Nick travels across the US meeting 'gifted' artists and musicians who suffer from neurological conditions including autism, TS and Parkinson's Disease, mental illness and finally meets Dr Oliver Sacks and the composer, Tobias Picker. Highly recommended documentary. The link between 'dysfunction' and artistic creativity is explored.


"I Swear I Can Sing' 2012 Excellent BBC 3 documentary about British singer/songwriter Ruth Ojadi who has TS. It follows her through the trials and challenges of going to college and work and her first public performance. It can still be seen online here http://t.co/5I0ACZJg Click 'watch on YouTube' (Twitter: @RuthOjadi)

"Tourette's Let me Entertain you" BBC documentary featuring Reggie Yates. Follows a group of talented young musicians with Tourette syndrome as they develop a musical collaboration - in three parts http://www.bbc.co.uk/programmes/p00wk639
Part 1 currently available on YouTube: http://www.youtube.com/watch?v=UlZy6Q6Kg84

First autistic White House appointee wishes to make society more equitable

Ari Ne’eman is the first openly autistic White House appointee in history — and one of the youngest at age 22. In December, he was nominated by President Obama to the National Council on Disability (NCD), a panel that advises the President and Congress on ways of reforming health care, schools, support services and employment policy to make society more equitable for people with all forms of disability.... Steve Silberman

Read more: http://www.autismsupportnetwork.com/news/first-autistic-presidential-appointee-speaks-out-29339023#ixzz1aZG4qWIq

Birthday Bach on the coast with Nick van Bloss

Reknowned concert pianist, Nick van Bloss, returned to the stage to give a number of performances, after virtually abandoning his public 'life in music' in 1984 due to the challenges of Tourette Syndrome.


Read a review of his recent concert in Southend-on-sea (April 2011): George's Musings | http://georgios1978.wordpress.com/2011/04/19/to-the-coast-for-some-birthday-bach/


For more information about Nick van Bloss and forthcoming performances and recordings visit: http://www.nickvanbloss.com/events.php

Musica Universalis: Pianist: Nick van Bloss

'Blissful freshness of approach...delicious...Fascinating...' ~ International Piano Magazine

'..sublime poetry, playfulness and, above all, a relish of what the modern piano can bring to this music in terms of dynamics, colour and articulation.'  ~The Sunday Times

....Producer Michael Haas, says that “in polyphonic music, such as Bach, Nick offers a superhuman degree of precision and individuality with each voice, while never losing overall transparency,” ....Musica Universalis

Read more: http://www.musicauniversalis-artists.com/artists/14

Noah - Slam Poet - 'Tourettes Without Regrets'

Noah makes a triumphant return to the stage and walks away with a second set of perfect 10's! .... Live perormance | YouTube | http://www.youtube.com/watch?v=8cQIPWxrjJI

Brave New Voices - "Tourettes" by Devin - Live Poetry

TS Teen of the Day: Russell Simmons presents Brave New Voices - "Tourettes" by Devin | Devin gives us a look at what a person with Tourette Syndrome goes through. His poetic voice is filled with sympathy for those who are teased and are suffering with this disorder, including himself. Watch the video on YouTube | http://t.co/4J8kKaaP

TSA Youth Ambassador Programme: The way forward

"TSA's Youth Ambassador Program trains kids and teens to talk about TS. The program gives young people with TS, their siblings, friends and classmates the preparation they need to speak about TS before their peers...." National Tourette Syndrome Association (http://www.tsa-usa.org) 


Learn more about this valuable initiative: Video (downloadable) and online materials: http://www.tsa-usa.org/aPeople/Youth/YouthAm.htm

Ariel Small who is featured in the documentary "Different is the New Normal" talks of his role as a TSA Youth Ambassador. See him in action: Link to the full documentary and watch online:
http://watch.thirteen.org/video/2135738235/

REFERENCES and CITATIONS 2

• Obsessive-compulsive disorder in Tourette's syndrome | Como et al. 2005 Adv Neurol. | http://t.co/kIuj2E9h
• Volumetric investigation of the frontal-subcortical circuitry in patients with OCD | Kang et al. 2004 | http://t.co/bSGx1MMS
• Altered attribution of intention in Tourette's Syndrome | Clare M. Eddy, Ph.D., Ian J. Mitchell, D.Phil., Sarah R. Beck, Ph.D., Andrea E. Cavanna, M.D. and Hugh E. Rickards, M.D. 2010 | http://neuro.psychiatryonline.org/cgi/content/short/22/3/348?rss=1
• Regional gray matter abnormalities in OCD: a voxel-based morphometry study. | Valente et al. 2005 | http://t.co/AihF2blr
• Dopamine-dependent reinforcement of motor skill learning: evidence from GTS | Palminteri et al. 2011 | Brain | http://t.co/OpzdQCqP
• Difficulties with theory of mind, recognizing faux pas & understanding intentionality in Tourette's tinyurl.com/3py9yq4
• Movement lateralization & bimanual coordination in children with TS | Avanzino et al. 2011 | http://t.co/YqeH2s9O
• Distinct structural changes underpin clinical phenotypes in patients with GTS. | Worbe et al. 2010 | http://t.co/Emzd9xxl
• A case of bilateral self-induced keratoconus in a patient with Tourette syndrome | BMC Opthalm. 2011 |  http://t.co/Zmzqy0YA
• Psychotherapy & medication management strategies for obsessive-compulsive disorder. 2011 | Full article: http://t.co/WewWkwlS
• Tics moderate treatment outcome with sertraline (Zoloft/Lustral) but not CBT in pediatric OCD. March et al 2007 http://t.co/2tCPuNMI
• Tolerability profile of aripiprazole in patients with Tourette syndrome | Cavanna et al. 2011 | http://t.co/zRqers6Y
• Tardive Tourette-like syndrome: a systematic review | Fountoulakis et al. 2011 | http://t.co/c6Z3PETc
• Peer Victimization in Youth with Tourette Syndrome and Other Chronic Tic Disorders | Zinner et al. 2011 | http://t.co/aNdwk1df
• The pathogenesis of autism. | Watts 2008 | http://t.co/PJKc5Bo7
• How "Educational Assessments" Skew Autism Prevalence Rates | http://t.co/xVXcKWYQ
• The autistic brain: birth through adulthood. | Courchesne et al. 2004 | http://t.co/bMoIeobV
• Autism: More Hot Air about Hyperbaric Oxygen Therapy (HBOT) | http://t.co/8EezWTZv