....in celebration of neurodiversity

Saturday, 7 September 2013

Tourette syndrome in the Classroom - v2

Tips and Educational Approaches
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"Intelligence can disguise disabilities and disabilities can disguise intelligence" - anon


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, unproductive 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 or drawing attention to themselves.

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 on the resources page) 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. In the U.K Tourettes Action and in the U.S, TSA are able to provide suitable presentation and teaching materials and videos.

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. NLDs >>​

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 (SPD) 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 initially when informed of a student's TS diagnosis 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, some 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 may 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. For some reading from an electronic display (e.g. back-lighting, pixelated text, low definition and sensitivity to screen flicker/refresh rate) can be more difficult than from printed paper. Dysgraphia will also cause difficulties with producing both text and drawing on paper. Both conditions may affect IT skills as can obsessive-compulsive symptoms and sensory-processing (integration) difficulties.

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.
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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.
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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.

Many of these points apply equally to higher educational and vocational/professional training settings. A university student may require similar but age-appropriate accommodations/adjustments in order to achieve their full academic potential.

Tourette syndrome and Education - v2

Teaching and Educational Resources for Tourette Syndrome
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Books:
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Concise and well-written introductory text to TS | 'Tourette Syndrome: The Facts' Mary Robertson & Simon Baron-Cohen | ISBN 0-19-852398-X
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'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 
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Links:

​TS Focus: Tips for teaching students with Tourette syndrome: TS in the classroom  

Tourettes Action: Good information and resources on Special Education needs for Tourette syndrome: http://www.tourettes-action.org.uk/special-education-needs/
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Tourette Syndrome Association of Australia TSAA have produced a 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

Special Educational Needs (SEN) Magazine: Feature by Suzanne Dobson looking at how Tourette’s affects pupils and what schools can do to help (Suzanne Dobson is CEO of Tourette’s Action) https://www.senmagazine.co.uk/articles/1169-on-the-tic-how-tourette-s-affects-kids-and-what-schools-can-do-to-help
   
​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 
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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
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'An Education in Education' - Dr B. Duncan McKinlay (An Educational Psychologist with TS)http://www.tourette.ca/resources-newsletters-tgl.php?entry_id=6873
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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

Obsessive-compulsive symptoms (e.g. TS-related OCB/OCD and OCD): OCD Action OCD at school: ​school.ocdaction.org.uk

About 'Tourette Focus' Twitter: @TSfocus

The primary aim of Tourette Focus is to encourage and improve awareness and understanding of the neurological disorder, Tourette Syndrome. It is aimed at everyone. In fact everyone who might come into contact with those with the condition or live their lives with it including educators. Other conditions are also touched upon, either because they co-occur frequently in those with Tourette Syndrome or have shared symptoms and hence challenges. We will include interesting and relevant material on Asperger Syndrome and autistic spectrum disorder as many of the difficulties of living with those conditions and negotiating life challenges are similar. There are many over-lapping symptom groups and TS and ASD (or aspects of them) may co-occur in many individuals. There is an especial focus on the problems faced by children and young adults in education and in dealing with the challenges of inappropriate teaching and healthcare provision. The issue of discrimination, disadvantage and inequality is considered in these areas and in employment and higher education/training.

We hope to include as much positive content as possible in order to show what those with TS can achieve. The media tend to focus more on the negative features and portray more sensational, albeit rarer, aspects of the disorder to increase appeal. We always like to hear success stories that might inspire others to meet their challenges or disadvantages.

We also provide abstracts of scientific and other publications that are relevant to Tourette Syndrome and associated disorders to enable quicker access to current research findings and hope eventually to provide an improved searchable database. Such abstracts provide a valuable resource for those wishing to learn more about evidence-based TS research and may be of interest to everyone.
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This is not, primarily, a support service but rather a means to find the resources, advice and information that may help you. For direct support, there are many excellent National Tourette Syndrome associations and other organisations whose contact details/URLs are available on our 'Resources' page and elsewhere on the site.
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The following assumptions are made:​
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That people with Tourette Syndrome deserve the same opportunities as others and should be protected from discrimination or denial of provision by equality laws
 
That an educators' responsibilities include providing the best education for a particular individual accounting for any educational disadvantage due to 'disability' they may have
 
A physician's principle obligation and professional duty is to act only in the 'best interests' of their patient and only make clinical judgements according to clinical need which must be evidence-based
 
The only reason for misunderstanding TS (including professionally) is a lack of awareness of the existing freely-available literature and information and in some circumstances insufficient advocacy or prejudice
 
Science and clinical evidence, not politics (nor media or popular anecdotal misconceptions) should determine understanding, diagnostic criteria and underpin treatment and awareness advocacy
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It is understandable that many parents and relatives are often bewildered by a diagnosis of TS in their child or family member. Parents in need of advice, reassurance and mutual support form the larger proportion of those who seek contact and information through TS organisations and online resources and are often responsible for a larger part of fundraising and campaigning. Parents want to do the best for their child and do all in their power to help them negotiate the complexities and demands of family life with TS as well as the educational and clinical/therapeutic options and challenges. The internet has helped increase immeasurably the opportunities for developing support and improved understanding and awareness and bring interest groups together across the world and bridge cultural divides.

There is also a growing movement for individuals with TS to want their voices to be heard. More and more people want to represent their interests 'directly' and speak out about what TS is actually like to have from their perspective and tell their stories. Those with TS are themselves challenging many of the misconceptions that have prevailed about Tourette's and many have become effective and high-profile advocates for the rights of those with the disorder and their achievements have helped inspire others to develop a greater belief in themselves and their own abilities and potential. This is something we wish to embrace and contribute to and hope TSfocus will be a small part of this movement for change. We hope the future will be better and that much of the unhelpful, inaccurate and 'denigrating' mythology about the disorder will be reduced for the benefit of all.
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A principle aim is to encourage evidence-based understanding and discuss specific known issues experienced by individuals with Tourette Syndrome. TSfocus is NOT intended to be a forum for clinical, scientific or general debate on Tourette Syndrome or it's associated disorders. The considered debate on the nature and management of TS takes place in the scientific publications where discussion is hopefully based on consensus, accurate data sampling and a peer-reviewed evidence-base.
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Open discussions/advice exchange are possible on a number of existing blogs, forums and an increasing number of FaceBook groups. Contributors to TSfocus give time freely but do not have resources sufficient to be able to respond directly to all correspondence. Links to excellent online/organisational resources for support and discussion are posted on this site.

Advice presented here should not been seen as definitive and a qualified and consensus opinion on matters clinical, should be sought always. Clinical evaluation and pharmacological management of Tourette Syndrome and other related neurodevelopmental conditions should involve the guidance of appropriate health professionals who are of verified competence. Your national Tourette Syndrome Association should be able to provide a listing of 'approved' specialist physicians. Always read further if necessary. Becoming an expert patient or parent is a great advantage as expertise and familiarity with current evidence is often inconsistent even among professionals and helps you prompt and encourage, in the right direction, those on whom you may depend for clinical, social and educational support.

Wednesday, 31 October 2012

Symptom Domains of Tourette syndrome


Symptom Domains of Tourette syndrome:

Current therapeutic approaches: 
Ph - Pharmacology
Su - Surgical (DBS)
Bh - Behavioural (CBT, CBIT/HRT)

LR - Possible learning-related difficulties may be associated: should be assessed and accomodated

Symptom Domain

Ph
Bh
LR





Tics
Motor and vocal tic behaviours. Complex and simple tics
* (+Su)
*
*





Attention Deficit
Impaired attention and concentration
*
*
*

Can appear as one of the earliest symptoms of TS in young children before tics








Hyperactivity 
Hyperkinesis/high level of activity
*

*

Rapid speech

*
*

Verbosity/poor turn-taking in conversation (reciprocity)

*
*

Can appear as one of the earliest symptoms of TS in young children before tics








Depression
Low mood
*
*


Reduced concentration


*

Common in a high percentage of individuals with TS








Social Impairments:
Theory of Mind difficulties


*

Literal thinking/understanding

*
*

Impaired attribution of intention/use of touching

*
*

Increased/disproportionate emotional responses




Speech difficulties

*
*

Auditory processing dysfunction (can involve more reading of lips and other expressive cues)


*

Distraction due to tics


*





Sensory Integration
SPD symptomatology


*

Sensory hypersensitivity: Can involve any modality (tactile, auditory, visual, olfactory, vibration sense, temperature sense, taste)


*

Many children find certain clothing uncomfortable




Preference for or avoidance of specific textures/materials




Different modalities may interfere with others (may not be able to discern speech when watching visual images or reading or not be able to read, write or listen effectively if accompanied by excessive visual stimuli or additional environmental noise)


*

Poor volume awareness when speaking


*





Non-verbal Learning Difficulties
Slow reading and writing speed (typing and reading screens may be similarly affected)

*
*

Sensory integration difficulties (can affect visual and auditory modalities)


*

Tics, obsessions and compulsions may interfere with studying/carrying out assignments


*

May take on too many simultaneous tasks


*

May have difficulty in completing assignments or personal projects

*
*

Individuals may compensate for NLDs with enhanced verbal abilities








Learning Difficulties
As with all children, those with TS may also have any category of LDs including dyslexia/dyspraxia/dysgraphia/dyscalcula etc.

*
*

The majority of individuals with TS fall into the average to high range of IQ. TS itself does not appear to impair intelligence (or focused motor skills in most) and evidence suggests that compensatory changes may occur over time which can lead to enhancement of some cognitive and motor functions. However some do have motor skills deficits. Handwriting quality and drawing accuracy is sometimes affected. Some have gait abnormalities.








Obsessive-Compulsive Behaviours
Ritualised activities/complex tic behaviours
*
*
*

Unwanted or unsettling thoughts (may be contrary to the individual's personality/feelings)


*

Obsessive thinking/thought tics (looping)


*

Anxiety about other people/family/upcoming events/changes. Heightened empathic response


*

Concerns about symmetry and evening-up, numerical ordering/preferencing (OCBs relating to washing/cleaning appear to be less common)


*

Perfectionism (may lead to prolonged time spent on activities/tasks)


*





Anxiety
Considered to be one of the most disabling symptom domains of TS
*
*
*

Panic attacks

*
*

Social anxiety and low self-esteem

*
*





Neuro-endocrine
Heightened stress response (evidence for increased cortisol concentrations)




Polyuria (increased diuresis/urine flow)


*

Increased thirst response




Evidence for hypothalamic involvement including temperature dysregulation




A number of hormones/neurotransmitter substances show altered CNS or systemic concentrations (including dopamine, serotonin, histamine, nor-epinephrine, GABA, cortisol, dynorphin-A/beta-endorphin, gonadotrophin, lutenising hormone release-factor, opioid receptor responsivity and increased urinary amines)








Sleep Dysfunction
Poor quality sleep
*
*
*

Reduced sleep time




Increased sleep disturbance/awakening and less REM sleep








Immunological
Some evidence for increased susceptibility to some infections (possible immunoglobulin deficiencies)




Enhanced inflammatory responsiveness




Allergies must be considered and ruled out




Many report an increase in other symptoms during illness e.g tics


*

Tourette syndrome does not have one 'specific' symptom profile that is represented in all individuals although the presence of motor tics for twelve months or more accompanied by 'vocal' tics is the defining feature in diagnosis. Some domains may be more represented in some or be of minimal significance in others. Evidence suggests that there may be several different 'phenotypes' of Tourette syndrome although these have proved difficult to define. One of the most significant axes is the relationship between tic behaviours and obsessive-compulsive behaviours (OCB). Much debate continues with respect to TS-related OCB/OCD and OCD. There are several perspectives. One is that TS and OCD are manifestations of a spectrum disorder with a common neuro-pathological/genetic origin. Another is that TS-related OCB is possibly intrinsic to TS itself but shares an area of over-lapping neuro-pathology, and thus symptomatology, with OCD. It is also becoming more apparent that a possible relationship with autistic specrum disorder may exist. Although some people with TS also receive a diagnosis of ASD it is known that a high proportion of those with a primary diagnosis of TS have some symptoms that are shared with ASD and once thought to be characteristic only of ASD. These include 'Theory of mind' and social difficulties. However it should be noted that these neuro-developmental 'disorders' are mostly defined only by observed signs and symptom sets and their underlying physiological/anatomical cause is unknown and thus no investigative tests are available. Sometimes responsiveness to specific drug therapies may help increase the strength of a diagnosis. Many neurological (and especially psychiatric) disorders are diagnosed using numerical scoring algorithms based on a relatively subjective 'grouping' of symptoms. Much current work focuses on determining the actual aetiology of neuro-developmental conditions such as TS, autism (ASD), ADD/ADHD and SPD in order to establish better diagnostic definition and reduce the ambiguities of subjective/intuitive assessment.