....in celebration of neurodiversity

Wednesday, 12 October 2011

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:

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



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

Tuesday, 11 October 2011

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

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/

Friday, 7 October 2011

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.