"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

Some considerations in Tourette Syndrome diagnosis and cherished ideas

The arguments for viewing Tourette Syndrome as a non-spectrum disorder that consists of a discrete chronic tic syndrome that is usually accompanied by one or more comorbid ‘disorders’, often appear unpersuasive. The multi-disorder 'splitting' approach needs more substantial symptomological and pathophysiological evidence to support it’s unquestioned use. Some would say it has become a set-in-stone ‘dogma’. It remains, possibly, as an over-valued legacy of psychological/psychiatric anecdotal perspectives on neuro-developmental medicine. In most cases physicians adhering to this approach, ‘fence off’ groups of symptoms from the overall symptomatology they encounter, or have presented to them in the ‘history’, and apply labels to those in a largely qualitative fashion. Diagrams used in opthalmology include a recognisable and genuine pattern within the complexity. Complex blot images provoke perception of something meaningful but, in actuality, only the complex pattern itself exists. 'Significant' patterns may be 'teased' from complexity and much scope for interpretation exists depending on the observer's perception and recognition abilities.

Ishihara (left) and Rorschach (right) diagrams 

It is accepted, currently and by necessity, that diagnosis of TS is almost wholly qualitative and that no tests or investigations are appropriate. However recent research suggests that some quantitative techniques may be of value in the future. There are several diagnostic criteria-driven checksheet and scoring protocols, including the Yale Tic Severity Scale, and some neurophysiological, neurohormonal and neuroanatomical correlates have been identified. In the consulting room however, beyond observable tic behaviours, there are few ‘signs’ that can be elicited on examination and there are no investigations or laboratory analyses. Brain imaging technology has not yet revealed acceptably consistent and sufficiently strongly defining structural characteristics. Work continues in refining understanding of the genetics of TS but this has, so far, proven to be complex and specific markers have not been identified.

The presentation of TS is seemingly complex and diverse [TS symptoms] however careful exclusion of other possible differential diagnoses [TS differentials] leaves a relatively unambiguous route to diagnosis. The combination of symptoms is difficult to misinterpret. TS may present in such a way that on the basis of observable symptoms alone it may be clear. Tic disorders may be transient and a significant proportion of all children do exhibit tic behaviours during their development. It is the continuous persistence of tics (e.g. motor and vocal) over a year or more that strongly suggests the diagnosis. Generally however a physician may not be able to, or fail to recognise tics during consultation. Patients are often able to suppress or hide tics under clinic conditions or may have tics that although present are not immediately noticeable. The clinical history is therefore, of principle importance, however good knowledge of TS presentation patterns is required in order to be able to ask the correct questions. 


The severity of tics is not always indicative of the overall severity of TS. Motor tics may affect any skeletal muscle groups and muscles of the diaphragm and those under autonomic control may also be involved. Those in abdominal, pelvic-floor, gluteal or thigh muscles may not be noticed. Diaphragmatic tics are relatively common but usually unseen as are some of those of the pharynx, tongue or larynx. Motor tics may consist of tightening and relaxing of muscles, or the adoption of slow-onset postures and positions or interfere with gait on walking. Vocal tics may consist of very obvious vocalisations, tongue-clicking, grunting etc. or may occur as soft or barely noticeable blowing or inhalations through the mouth or nose. Many motor and vocal tics are easily disguised as ‘normal’ activities, a skill that some patients are able to develop to avoid drawing attention. This is usually a survival skill developed to negotiate the difficulties of social, work or school environments.

Whether indoctrinated into the splitting camp or the ‘integrated’ disorder perspective, it is important to determine a complete clinical picture of all symptoms. Around 90% of individuals have so-called comorbid disorders which strongly suggests that many symptoms, thought of as belonging to one disorder or another, might actually be symptoms of TS itself. The intricacies of attempting to separate or group these symptoms into a plethora or discrete disorders, is fraught with pitfalls. A specific danger of the comorbidity concept is that it logically leads on to a fragmented approach to management, therapy and supportive provision. There has been a tendency among many physicians to treat each presumed disorder as a discrete entity. This, unfortunately, has lead, in many cases to ineffective treatment regimes which can actually exacerbate some symptoms or introduce new ones and so further complicate the clinical picture. It is very easy to become lost in a seemingly intractable maze of symptoms and continual drug adjustments/substitutions. 

A particular difficulty comes with attempting to separate obsessive, compulsive, impulsive behaviours, emotional reactivity, hyperactivity and the difficulties that manifest as attention deficit, poor concentration and impaired sensory processing/hypersensitivity. Labelling these as OCD, ADD/ADHD, SPD does not represent well the complex interaction between these and so-called Tourette or tic behaviours. Additionally significant differences have been noted between OCD and Tourette-related obsessive-compulsive behaviours (OCB). Some tics are undoubtedly beyond conscious control in younger patients but many have a very strong conscious and compulsive origin. Indeed if they were not compulsions the individual would not be ‘compelled’ to express them. Some researchers/clinicians have coined the term ‘premonitory urges’ to explain what they feel the TS patient is trying to convey to them. It is merely a intellectual exercise to make a distinction between tic urges that ‘need’ to be fulfilled and an action that is born of a compulsion. There is an established distinction perceived between simple and complex tics and obsessive and compulsive behaviours but those with TS do not always share this perspective. Many individuals are mystified by the certainties expressed by expert physicians regarding how their ‘disorder’ is divided neatly into discrete components. They may not accept, or may disbelieve, that they are so unfortunate as to be inflicted simultaneously with so many troublesome disorders. Unless you are both physician and TS sufferer it would seem extraordinary that such an ‘internalised’ and existential disorder could be adequately perceived with insight by another even if they are clinically qualified.

Another area of contention arises from the ‘social difficulties’ that many with TS experience. When described (sometimes with consternation and reluctance), the response is often that TS does not include such issues. The conclusion frequently reached is that the individual may also have an autistic spectrum disorder: ASD or Asperger Syndrome. However it is quite common for symptoms, usually thought to be typical of ASD, to occur in those with TS but with several of the definitive autistic triad of impairments being entirely absent. In TS there may be difficulties with ‘theory of mind’ perceptions. An example is being unable to effectively read other’s intentions and to detect deception. Conversational difficulties occur in the form of ‘perseverating’ excessively on a particular favoured topic, speaking rapidly and expansively without knowing when to stop, change topic or allow the other conversee to respond (poor turn-taking or reciprocity). Difficulties also occur with speech volume, overuse of particular much-loved words or phrases and in knowing what is socially appropriate to say, to whom and when and if it touches upon a taboo subject. As is well known, taboos and rules have another special place in TS in that they frequently provoke an overwhelming desire or need to be transgressed. Difficulties also occur in initiating conversation or social relationships, and maintenance and breaking-off can be equally challenging. Yet these and other difficulties may coexist without other defining autistic characteristics. In contrast to  autism those with TS are often beset by overwhelming emotional responsiveness and concern for the well-being of others (empathy and compassion) whereas autonomy, preference for material rather than living ‘things’ and language difficulties such as understanding the contextual meaning of words and phrases are more common in autism. 


Use of language, even though having an often substantial vocabulary, is often subtly different in Tourette and Asperger Syndromes. The latter tend more to ‘lecture’ didactically and may lack expressiveness and often seem to ignore context. In TS, the reverse may be true with the use of overly expressive and expansive phraseology and a tendency to explore and elucidate, with great zeal, all possible connections and avenues with bewildering rapidity and imagination, and often not with immediately-apparent consistency. Both TS and ASD may include obsessive thinking, reluctance to change a favoured way of doing things or a situation, as well as tactile problems with the texture and feel of clothing etc and hypersensitivity to and avoidance of ‘unpleasant’ environmental sensory stimuli such as noises, bright or flickering lighting, smells etc. A marked difference in avoidance of social situations, for reasons of stress can often be seen. In ASD it is unwillingness, or not having a need, to socialise or that people may be intimidating, too forward and willing to invade the individuals personal space. Many with TS are extremely gregarious and want to immerse themselves in the social environment and may even crave more interaction and enjoy close and tactile contact. They may however, paradoxically and reluctantly, go to considerable lengths to avoid social contact because of fears of ridicule, saying or doing the wrong thing (committing social ‘faux pas’) or due to the stress of holding in or hiding their tics and other behaviours. They are often painfully aware of what others think of them and fear embarrassment or criticism or, worse, ridicule.

The diagnosis of ASD in those with TS is frequently made but it is a diagnosis that should be made with careful consideration of any shared traits between the disorders and not made simply because there is a perceived requirement to fence-off symptoms to ‘account for everything’ and apply a discrete label within the comorbidity paradigm.