....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.