....in celebration of neurodiversity

Thursday, 22 September 2011

Tourette Syndrome Associations and other organisations



    Other Useful Links

    Brad Cohen Tourette Foundation:
    http://www.classperformance.com/
    http://www.bradcohentourettefoundation.com/

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

    Jim Eisenreich Foundation:
    http://www.tourette.org/content/jim-eisenreich-foundation-children-tourette-syndrome

    Tourette Syndrome multicultural outreach association. Empowering unique children through education: http://t.co/3LC3PYe

    National Institute of Neurological Disorders and Stroke:

    Wednesday, 21 September 2011

    Video documentary films on autistic spectrum disorders and Asperger Syndrome

    "Rage for Order" from the Series 'Mind Traveller' featuring case studies presented by Neurologist, Dr Oliver Sacks. Profiles the life of Jessica Park, an accomplished artist with autism. View online   The Paintings of Jessica Park: website http://www.jessicapark.com/

    "The Woman who Thinks like a Cow": Documentary about Dr Temple Grandin a Professor of animal behaviour who has high-functioning autism and is a successful writer, lecturer, business-woman and scientist. View online

    "The World Needs all Kinds of Minds": Lecture given by Dr Temple Grandin on understanding autism. | TED | View online

    "My Crazy Life": documentary about Reuben a young man with Asperger's who gives an excellent insight into life with the disorder View online

    "My Experience with Autism": Lecture by Dr Temple Grandin (1hr 20mins): View online

    "Grey Matters": The Science and Fiction of Autism Lecture by renowned autism researcher Laura Schreibman. Series: "Grey Matters" [4/2007] UC Television: View online


    "Hope for autism and Asperger's Syndrome": My Story: Personal videos by Taylor a teenager who has Asperger's View online

    "My life with Asperger's": Personal account by a young woman who has both Asperger's and Tourette Syndromes View online

    "Beautiful minds": Stephen Wiltshire autistic artist 'savant' who draws from memory View online

    Autism Talk TV - What's the Deal With Women, Fatherhood, and Executive Functioning?  View online  View more WrongPlanet.net videos on: The Wrong Planet channel.

    Tuesday, 20 September 2011

    Neurodevelopmental disorders usually consist of a 'mosaic' of impairments and attributes

    Neurodevelopmental 'Spectrum' disorders such as Tourette Syndrome and autism/ Asperger's Syndrome consist of a 'mosaic' of impairments, deficits or attributes. This complex of characteristics differs from one individual to the next and results in the neuro-diversity that is well-known is these disorders. This renders many of the stereotypical assumptions and generalisations that are made by those who are less well-informed, of limited value. These misconceptions are not only common among the general population but are astoundingly prevalent among doctors, nurses, psychologists, teachers, principals and welfare personnel. 


    There is a freely available and voluminous literature on Tourette Syndrome and a long-standing and substantial body of clinical research and diagnostic expertise which is well-documented. Tourette Syndrome is not a rare condition and has a broadly similar prevalence to autistic spectrum disorders. There is, therefore, little reason for widespread misunderstanding on the part of healthcare professionals. Many sources are available online for excellent educational materials including videos and fact-sheets and listings of approved medical consultants. These are obtainable from National Tourette Syndrome Associations in many countries. Earlier TSfocus posts give links to a number of association websites National Associations
    Only around 10% or less, of those with Tourette Syndrome, have 'uncomplicated' TS in which the only symptoms are motor or vocal tics


    Many individuals have symptoms of attention deficit, hyperactivity, obsessive / compulsive behaviours and sensory processing/hypersensitivity difficulties. Speech difficulties are common and include stuttering, interrupted speech-flow, thought-blocking, vocal tics, motor tics and poor volume moderation, pronunciation or intonation. Some have hyper-diuresis (increased urine production). These are the 'hidden' or less well-known aspects of Tourette Syndrome and are often the most important issues in determining disability.

    Different is the New Normal

    Documentary: Different is the New Normal | To see the full documentary free online (56 minutes): Click here: http://watch.thirteen.org/video/2135738235/
    Ariel Small has Tourette Syndrome and faces many challenges growing up with the disorder and dealing with school and college life. Portrayal of Ariel and his family showing that tics are not the only part of TS that causes difficulty.



    View a 20 minute synopsis:

    Watch Different is the New Normal on PBS. See more from THIRTEEN Specials.




    Ariel Small and his mother, Robin, discuss the film, Different is the New Normal, the future
    http://www.thirteen.org/insidethirteen/2011/09/13/different-is-the-new-normal-a-qa-with-ariel-and-robin-small/

    Link to the full documentary (56 mins):
    http://watch.thirteen.org/video/2135738235/

    Selected Journal References

    Motor and vocal tics in Tourette Syndrome, as well as anxiety, concentration and difficulties with sensory processing and emotional restraint, may be exacerbated by anxiety, stress, fatigue and boredom and by stimulants such as caffeine, Ritalin (methylphenidate) and amphetamines

    New TS Documentary: Different is the New Normal | Thirteen/PBS

    Watch Full Documentary Online "Different is the New Normal" 
    A teen with Tourette Syndrome, Ariel Small | Thirteen PBS | 


    Sensitive and insightful portrayal of growing up with and meeting the challenges of TS:



    Link:
    http://watch.thirteen.org/video/2135738235/

    Saturday, 17 September 2011

    Conversational Challenges

    Getting 'reciprocity' right, during conversation, can often pose a challenge for individuals with Tourette Syndrome. Many are poor turn-takers and often miss conversational cues. There are also difficulties for some in knowing how to end a particular conversation or topic without offending or appearing abrupt. For some, the fine line between what may or may not be considered acceptable in terms of conversational topics or word use, presents particular difficulties.

    Symptoms are not disorders

    Symptoms are not disorders. Disorders give rise to symptoms and require underlying mechanisms to account for them. Does being oppositional and defiant mean you have 'Oppositional Defiant Disorder' if such a 'disorder' does exist? Putting the word disorder after a symptom does not give substance to the existence of a real disorder - it is just a label. The problem is that once a 'disorder' is proclaimed and given 'credibility' then a pharmaceutical cocktail (often experimental and without a substantial evidence-base) will be thought appropriate to it's treatment.


    Frequently symptoms that are assumed to be due to one particular disorder may be symptoms actually produced by a different disorder. Therefore assumptions cannot be made without supporting evidence or pathological mechanisms to account for them. Many clinical disorders share similar symptoms so careful analysis and exploration of differential diagnoses must always be undertaken.


    Autistic Spectrum Disorder (ASD) and Tourette Syndrome often both share the symptoms of obsessive thinking, ritualised behaviours, sensory hyper-sensitivity, low latent sensory inhibition, poor understanding of intentionality and deception in others, perseveration and poor reciprocity in conversation, reading and writing difficulties, attention deficit and hyperactivity.


    There is usually a tendency for physicians to section off certain intrinsic symptoms and designate them as an additional disorder - the so-called splitting approach. For example someone with Tourette Syndrome is very likely to have poor attention and be very active (hyperactive) however they do not require a diagnosis of ADD or ADHD to explain those symptoms. Sensory processing issues are very much an intrinsic part of ASD and TS so a separate diagnosis of Sensory Processing Disorder (SPD) is often redundant. Similarly many that are diagnosed as having ASD or Asperger's and TS together may only have one of these as the symptom overlap is extensive and extremely difficult to breakdown in any clinically/behaviourally meaningful way and is often a result of simplistic/mechanistic thinking or poor understanding of these disorders.


    A rational approach would involve the identification of the 'core disorder' and the listing of the symptom/impairment presentation of that individual:
    Such as 
    Tourette Syndrome:
    including:

    • Motor and vocal tics
    • Complex tic behaviours
    • Obsessive and compulsive behaviours 
    • Attention and concentration deficits
    • Sensory processing difficulties (with hypersensitivity, visual and hearing difficulties)
    Social difficulties: 

    • Difficulties with conversational reciprocity/perseveration, speech blocking and assessing intentionality, frequent social 'faux pas' behaviours, inappropriate statements etc

    Educational difficulties:

    • Reading, writing and keyboard skills affected by tics, complex tics, OCB
    • Comprehension during lessons and reading are affected by sensory processing and attention difficulties
    • Stress due to hiding/supressing tics in the classroom or examination environment
    • Disturbance of class due to vocal and overt motor tics
    Rather than: Tourette Syndrome, ADD, ASD, SPD, OCD etc
    Merely producing a listing of acronyms representing different disorders is often bewildering and unhelpful to the individual or their carers. Some developmental physicians are now tending not to use this approach but to usefully describe the symptom pattern and specific impairments detected, unique to that individual. This avoids generalisations inherent in diagnostic labelling and acknowledges the diversity of neuro-developmental presentations. It is often very presumptuous and clinically inappropriate to cite lists of disorders based on extremely qualitative evaluation. Each 'disorder' opens a large potential perspective of concerns as well as potential, fragmentary and sometimes conflicting and unworkable management approaches. Each individual will have a unique presentation and require a unique approach.

    'Co-morbidity' theory controversy in TS

    • One of the principle issues requiring resolution in the field of TS, is the persistence of the 'comorbidity' theory
    • The current trend is for 'alphabet soup' diagnoses to account for observed/reported TS symptomatology that lead to an 'acronymic' list of so-called 'coexisting conditions'
    • 90% of individuals with TS are found to 'have' these co-morbidities
    • Most co-morbidities are simply a product of arbitrarily selecting a group of symptoms or behaviours and labelling them as a disorder with no evidence produced to support the existence of those 'disorders' or a plausible mechanism to account for them (e.g. pathophysiology)
    • If 90% of individuals with a disorder, such as TS, have a 'comorbidity' then it does not really qualify as a comorbidity but is an intrinsic part of a defining symptomatology
    • If an overwhelming majority of TS cases consistently have a set of characteristic symptoms there is therefore little requirement to cite co-morbid causes

    Disability Discrimination at Salford University

    Student with disability takes Salford University to court for disability discrimination: http://t.co/0mBFw5q

    Friday, 16 September 2011

    Books about Tourette Syndrome

    Recommended books on or featuring Tourette Syndrome:


    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

    'A Family’s Guide to Tourette Syndrome' 2012 National Tourette Syndrome Association (TSA) http://www.tsa-usa.org/news/FamilyGuide_book0612.html


    'Why Do You Do That?' This is a book about Tourette's Syndrome for children and young people. Aimed at 8-16 year-olds, the authors describe tics and Tourette sydrome in clear language and provide a simple explanation of the biological causes of the condition.


    'Front of the Class' Brad Cohen (non-fiction/biography)


    'Busy Body' Nick van Bloss (non-fiction/biography)


    'What Makes You Tic' Marc Elliot (non-fiction/biography)


    'Passing for normal' Amy Wilensky (non-fiction/biography)


    'An Anthropologist on Mars' (Chapter: 'A Surgeon's Life') Dr Oliver Sacks (non-fiction/biography/case studies)


    'Making Allowances' .. Personal Accounts .. Chris Mansley Editor (non-fiction/biography)


    'Twitch and Shout' Lowell Handler (non-fiction/biography)


    'Don't Think About Monkeys. Extraordinary Stories..' A Seligman, J Hilkevich (non-fiction/biography)


    'Life Interrupted' James McConnell (non-fiction/biography)


    'Icy Sparks' by Gwyn Hyman Rubio (fiction)


    'Torn Apart' (also titled 'Against Medical Advice') James Patterson (fiction based on a real life events involving a child with a very severe form of TS)


    'Welcome to Biscuit Land: A Year in the Life of Touretteshero' Jessica Thom (non-fiction/biography)  - "The blessed Jess Thom… who chose to embrace the condition, to be open, funny, frank, intelligent and enchantingly entertaining about it… Now she has been and gone and done and written this charming, touching and valuable book." -- Stephen Fry

    Buy from Amazon UK




    Unwanted thoughts and compulsions

    • An aspect of Tourette Syndrome that many find very difficult to talk about, is unwanted thoughts which may be intrusive and troublesome
    • Unwanted thoughts may actually be in direct opposition to the person's preferred attitudes & personal feelings and may be thus very distracting and disturbing
    • Unwanted thoughts may involve or give rise to strong compulsions or impulsive urges to respond to them and may be very stressful to suppress
    • Some people with Tourette Syndrome experience unwanted compulsions to place themselves in risky situations
    • Compulsions to touch moving machinery or approach hazardous situations have in some cases resulted in individuals sustaining injuries
    • There is a close association between obsessive thought processes and compulsions which may be responsible for complex tics and ritualised behaviours

    Student with Tourette Syndrome hopes one day to become 'the doctor they never had'

    Student with Tourette Syndrome hopes one day to make a difference and 'become the doctor' they 'never had' http://tinyurl.com/6l84tr8

    NLD: Non-verbal learning difficulties

    NLD (non-verbal learning difficulties) may occur with a number of neuro-developmental disorders, most commonly with Asperger's Syndrome. People with Tourette Syndrome may exhibit the symptoms of NLD to a greater or lesser extent.


    Symptoms and characteristics of NLD:
    • Difficulties with misunderstanding or inability to respond appropriately to non-verbal communications
    • Difficulty maintaining attention in noisy or visually complex environments
    • Sensory Defensiveness
    • Difficulty with remembering or recognising faces and names
    • Problems with locational navigation (e.g. negotiating return journeys, becoming lost in buildings, following directions, coping with route changes)
    • Difficulties with reading & writing quickly despite often having excellent language abilities and early reading abilities
    • Diificulties with use of IT and electronic media: typing on a keyboard, reading from screens (especially backlit or flickering) and following information presented via audio/visual media 
    • Often compensate for non-verbal difficulties with highly developed verbal abilities. Often rapid speech and too many words
    • Perception of the environment as chaotic and may attempt to take on too many simultaneous activities
    • Anxious about failure. Often over-compensate by doing too much too quickly and hence become confused with the complexity and magnitude of the tasks they are faced with
    • Difficulty with the recognition of emotions in other people and in expressing one's own emotions
    • Difficulty with the appropriate use of touching. When to do it, how and when not to

    About Tourette Focus

    To encourage improved awareness and understanding of the neuro-developmental disorder, Tourette Syndrome, among the public, patients, parents and health and education professionals. Other conditions are also covered, either because they are also co-occur frequently in those with TS or share similar challenges or symptoms. 


    Tweets posted on @TSfocus Twitter feed are also archived here as @TSfocus TIMELINE entries in the index. 


    Comments are welcome and discussion is encouraged. However insensitive or offensive comments are not permitted. Ideally any valid critique of blogs and comments, even if controversial, should be expressed with decorum, balance and politeness. A principle aim is to encourage evidence-based dialogue and also relate specific known issues of individuals with TS. It is helpful when referring to a source of information or link to make this available in the post. The advice here should not been seen as definitive and an informed consensus opinion should be sought. The clinical evaluation and management of individuals with the conditions touched upon must be with the guidance of appropriate health professionals.

    Symptoms and Behaviours in Tourette Syndrome

    Tourette Syndrome is a neuro-developmental 'spectrum' disorder [TS spectrum]. Tics are part of the disorder but not proportional to overall severity of TS in an individual. Although often also referred to as 'Tic spectrum disorder', do not always expect to see overt tics in all individuals. Some motor tics will be in muscle groups that are not easily observed. Motor and vocal tics, although involuntary, can often be suppressed or 'hidden'. Not all individuals are able to suppress tics and other behaviours and find this extremely stressful. Many older people are better able to hide their symptoms, an ability that is useful in order to negotiate 'social opposition' and prejudice by others. Inhibitory dysfunction has a 'central' role in TS [inhibitory dysfunction].
    • Vocal tics: throat clearing/coughing, words/phrases/grunts/squeals & indraw/expel air via mouth/nostrils, tongue clicks
    • Motor tics: twitching/tightening/relaxing of any skeletal muscle group > face/neck/limbs/abdomen/gluteal muscles & also the diaphragm
    • Complex tics: sequential movements or behaviours. 'Complex tics are distinct, coordinated patterns of sequential movements. They may appear purposeful, as if voluntary' .... TSA. Complex tics may mimic meaningful actions or gestures. Some individuals are able to disguise or hide tics by incorporating them into behaviours that appear 'normal.'
    • Palilalia: Repeating one's own words or parts of phrases. Often repetition of the ending of a phrase
    • Echolalia: The repetition of other's or heard words, phrases or sounds
    • Palipraxia: Repetitive movements. An action may be performed over & over again before before compulsion/tic is completed
    • Echopraxia: Copying/mimicking the movements & gestures of others
    • Obsessive thinking and unwanted thoughts
    • Compulsive/impulsive thoughts and behaviours (may involve risk-taking)
    • OCD has traditionally been considered as a 'co-morbidity' however evidence suggests that the TS-related obsessive and compulsive behaviours that affect more than 60% of individuals, differ substantially in character and treatment-responsiveness to OCD.
    • Enshrinement: fragmentary phrases, words, sounds, music or thoughts may 'stick' in the mind & reiterate or become 'enshrined' as vocal tics
    • Attention deficit and concentration difficulties. Frequently difficulties with focusing on a single specific task. Tendency to take on many separate tasks simultaneously (taking on too much at once).
    • Low mood (a depressive symptom) is very common in TS. Clinical depression may be worsened by 'reactive' low-mood. The seeming 'exuberance' and (hyper)activity that often characterise TS in combination with low mood has lead to erroneous 'diagnoses' of bipolar disorder rather than TS and may also mask the extent of any underlying depression. Obsessive self-harming thoughts can be significant in some and should always be taken seriously. Risk taking and impulsive behaviours in TS must also be considered. In many cases it is difficult to determine whether low-mood is 'clinical' and part of TS itself or whether of 'psychological' origin as a consequence of dealing with the challenges of the condition and the reactions of others.
    • Thought-blocking, sensory/attention interference and "Inner voice" distractions. Often referred to as "tics of the mind"
    • Speech difficulties: include stuttering, speaking loudly, rapidly, indistinctly, broken speech-flow, poor intonation and vocal tics. Repetition and perseveration.  Poor reciprocity in conversation and initiation/commencement. Socially inappropriate or non-intentional speech content. Cursing (coprolalia), although widely thought of as characteristic due to inaccurate media portrayal and over-emphasis, affects only a minority of people with TS and is a relatively rare symptom (10-12% or less).
    • Difficulties in understanding or 'reading' others intentions, actions/reactions and in detecting deception/ingenuousness. These are known as 'Theory of mind' difficulties. This sometimes gives the appearance of being gullibile or overly trusting. Many with TS tend to be quite 'direct' (open) and detailed in their own expressions of their thoughts, feelings and intentions. This partly helps avoid the 'ambiguities' they experience themselves in relation to understanding other people but is also a sign of reduced inhibition. Negative consequences from others reactions can lead to an intentional 'closing-up' or wariness and in some cases avoidance of the type of social situations that are likely to present 'pitfalls'. People with TS may over-estimate other people's understanding and ability to 'see things' and make connections that appear obvious to them. This is perhaps a consequence of rapid, expansive and analytical thinking that appears characteristic in TS. Appropriate descriptions of the high level of cognitive activity that seems almost universal in TS are 'restless' and 'relentless.'
    • Recent research suggests that of the common symptom set (or symptom 'spectrum') experienced by post-adolescent individuals with TS, anxiety and panic attacks are the most troublesome and represent the greater part of the disability-impact than other symptoms. Previously attention-deficit, hyperactivity and obsessive and compulsive symptoms have been considered the most disabling and may be so for children.
    • Empathic attunement (hyperempathy) - Many with TS experience intense feelings of concern and empathy for others (and for animals) which can provoke strong anxiety especially in regard to family and close friends. Such concern for their 'well-being' often extends to individuals who are unknown to them but whose plight has been reported. These behaviours may have a close association with obsessive-thinking. Despite popular misconceptions, empathic attunement also occurs in autistic spectrum disorders - it cannot be assumed that an individual lacks empathy because they do not express or are unable to articulate their feelings well verbally.
    • Non-verbal learning difficulties (NLD)
      http://tsfocus.blogspot.com/2011/09/nld-non-verbal-learning-difficulties.html
    • Many individuals experience a lessening of motor and vocal tics as they progress into adulthood however the non-tic symptoms of TS may persist or can even worsen with age. There is a tendency for greater adaptation and compensation with age and improved ability in suppressing/managing socially-relevant tics. This may give a false impression of resolution. As the individual ages they have a strong imperative to learn and adopt compensatory 'survival-strategies' to hide their condition as much as they are able. They may however incur considerable 'stress' due to suppression and social-vigilance.

    Differentials in the diagnosis of Tourette Syndrome


    • Chronic tic disorder: Single or multiple motor or vocal tics (not both) occur for more than 12 months*
    • Transient tic disorder: Single or multiple tics occur for at least or more than 4 weeks but for 12 or less consecutive months*
    • Tardive Tourettism: Dyskinesia induced by neuroleptic drugs (antipsychotics) such as haloperidol, risperidone, pimozide etc
    • Epilepsy: Patient has seizures or fits usually with jerking movements & associated with loss of consciousness
    • Dystonia: twisting/contraction of specific muscle groups. Can affect face but typically the legs. Dystonia is usually progressive
    • Myoclonic epilepsy: A form of epilepsy in which jerking movements occur but without loss of consciousness
    • Affective Disorder: Depression is one of the most common misdiagnoses of Tourette Syndrome NB:CNS serotonin & nor-adrenaline tend to be low
    • Affective / Mood disorder: Bipolar Affective Disorder has been a frequent misdiagnosis
    • Autistic Spectrum Disorder/Asperger's: Many shared symptoms. NB: Can co-occur with Tourette Syndrome
    • Sydenham's Chorea: A movement disorder (St. Vitus Dance). Rheumatic fever common aetiological factor (75%)
    • ADD/ADHD: Very frequent misdiagnoses in TS. Attention deficit & hyperactivity are very common aspects of Tourette Syndrome
    • Allergy: Common misdiagnosis in the past. Carefully assess/eliminate possible hypersensitivity/allergans
    • Spasmodic torticollis: Including 'Wry Neck' > more prevalent between ages of 30 - 50 years
    • Psychosis/schizophrenia: Not a true differential as little symptom overlap > but misdiagnoses have occurred. The presence of neuroleptic side-effects can be a confusing factor (e.g. tardive dyskinesia / hyperkineses)
    *Classification of Tic disorders (Click to enlarge)
    Table taken from: Advances in understanding and treatment of Tourette syndrome. Nat Rev Neurol 2011 Dec; 7(12):667-76.