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Tourette Syndrome Presentation Tourette Syndrome Presentation Presentation Transcript

  • Understanding Tourette Syndrome Ken Wheeler, M. Ed. Thomas B. King, M. Ed. Educational Consultants Division of Child Neurology Virginia Commonwealth University Health Care System
  • TS, AD/HD, OCD – what they have in common
    • No biological test
    • Evolve in childhood
    • Standard diagnostic criteria used
    • Impairment defines the condition
    • Diagnosis and Treatment take time
  • Anatomy of Tourette
  • Functions of Basil Ganglia Structures - Amygdala
    • The amygdala is connected with the development of social behaviors
    • Emotional memory
    • Social interpretation
  • Structures of the Basil Ganglia Thalamus
    • The Thalamus is the “gate keeper” of the brain
    • It “tastes” every sensation that comes in and/or goes out of the brain (except olfaction)
    • Sensory and emotional responses must pass through the Thalamus
  • Transmission
    • Genetically transmitted by autosomal dominant gene
    • Patient has 50% chance of passing the gene to children. However, that genetic predisposition may express itself as TS, as a milder tic disorder or as obsessive compulsive symptom with no tics at all
    • In some cases TS may not be inherited and are identified as sporadic TS. The cause in these instances is unknown
  • Tourette Syndrome Diagnostic Criteria
    • Onset before age 18
    • Multiple motor tics
    • One or more vocal tics
    • Tics evolve in a progressive pattern
    • Symptoms wax and wane
    • Duration longer than one year
    • Absence of precipitating illness
    • Observation of tics by knowledgeable person
    • TS Classification Group-Definition and classification of Tic Disorders
  • Other terms that may refer to TS
    • Chronic Motor or Vocal Tic Disorder
    • Transient Tic Disorder
    • These terms may be used by doctors because the duration of the tics is less than one year
  • Other Summary Information
    • Affects BOYS 3 - 4:1 more than GIRLS
    • Involuntary with limited capacity to suppress
    • Mean age of onset for tics 6 – 7 years
    • Affects 2% of the general population- a conservative estimate since it is an under diagnosed condition
  • Frequency of Co-Morbid Conditions in TS Population
    • Attention Deficit/Hyperactivity Disorder
    • [50-75 %]
    • Obsessive-Compulsive Disorder
    • [30-70 %]
    • Anxiety Disorders [20-80%]
    • Mood Disorders [20-80%]
    • Academic difficulties [50%]
    • Harvey Singer, M.D., director, Johns Hopkins Hospital, Tourette Syndrome Clinic
  • What Does TS Look Like? Motor Tics
    • Motor Tics - Simple
      • Eye blinking
      • Facial Grimacing
      • Shoulder shrugging
      • Head jerking
      • Arm thrusting
      • Nose twitching
      • Mouth opening
      • Eye rolling
    • Motor Tics - Complex
      • Touching objects
      • Touching or Hitting self/others
      • Biting lips or arms
      • Scratching persistently
      • Twirling
      • Foot tapping/dragging
      • Jumping
      • Hopping
  • What Does TS Sound Like? Vocal Tics
    • Vocal Tics - Simple
      • Throat clearing
      • Sniffing
      • Grunting
      • Humming
      • Whistling
      • Spitting
      • Squealing
      • Clenching teeth
    • Vocal Tics - Complex
      • Stuttering
      • Echolalia - Repeating of another’s words
      • Palallia - Repeating one’s own words
      • Copralalia - Speaking obscene word/phrases
  • Behavioral Concerns with AD/HD
    • Quick Temper
    • Overreaction
    • Mood Changes
    • Difficulties with impulse control
    • Oppositional behavior
    • Defiant behavior
  • Mood Disorders
    • Depression can also be a feature
    • Usually correlated with OCD or ADHD
    • Also correlated with tic severity
    • Journal of affective disorders, 2006 Apr;91(203):256-8.
  • Anxiety Disorders
    • Overly active
    • Poor concentration
    • Poor general organization
    • May be due to neurotransmitters and not just “worry” about tics
    • Looks like ADHD, but it’s not and requires different treatment
  • Rage Attacks
    • May be called intermittent explosive disorder (DSM – IV TR)
    • Probably due to complex urge resolution
    • Functional Behavioral Analysis may not identify any environmental factors
    • Child will usually be remorseful, but unable to explain behavior
  • Learning Disabilities
    • Writing Disorders
    • Reading Comprehension Disorders
    • Math Disorders
    • Visual-Motor Integration is almost always a problem
    • Processing Speed and Efficiency Difficulties
  • Academic Concerns with Attention & TS
    • Has difficulty organizing work
    • Has difficulty playing quietly
    • Often talks excessively
    • Often interrupts/intrudes on others
    • Does not appear to listen to what is said
    • Often loses things necessary for school/home
    • Engages in physically dangerous activities without considering consequences
  • Psychoeducational Assessment
    • Reading Comprehension Assessment
    • Psychomotor Speed
    • Working Memory
    • Comprehensive Writing Assessment
    • Academic Fluency
    • Rapid Automated Naming
  • Obsessive-Compulsive Disorder and TS
    • Obsessions
    • Intrusive and recurring thoughts and images
    • Compulsions
    • Irresistible urges or impulses to repeat ritualistic acts over and over and over again
    • OCD waxes and wanes [like TS does]
    • Exacerbated by stress [like TS]
  • Common Obsessions & Compulsions
    • Need for symmetry and perfectionism
    • Evening out
    • Neatness
    • Counting
    • Checking things over and over
    • Constant doubt or worrying
    • Germ obsessions
    • Ritualistic behavior
  • Basil Ganglia
    • Structures of the basil ganglia are also suspected of being involved in OCD
    • Another disorder that may have basil ganglia involvement is Asperger Disorder
    • OCD, Tourette Disorder, and Asperger may be simply different manifestations of the same disorder
  • Executive Function
    • Brain processes involved in organizing and ordering our actions and behavior
    • Executive Dysfunction can reduce one’s ability to
      • Plan
      • Organize
      • Sequence
      • Pace assignments, projects, other work
  • Educational Modifications or Medical Treatment
    • Goal: Minimize impairment
    • Maximize adaptive skills
    • Most important in planning:
    • Encourage self-esteem
    • Prevent depression
  • Coping with Tourette Syndrome In the Classroom
    • Role of the Teacher
    • Helping with identification of new cases and referring them to the proper channels for help
  • Coping with Tourette Syndrome In the Classroom (cont.)
    • Being knowledgeable & informed on the subject as well as sharing that knowledge with colleagues, teachers are in an excellent position to reduce years of torment and embarrassment which leads to destruction of self-esteem & motivation
    • Skillful handling of the child in the educational setting
    • There are 2 main areas of concern (1) the psycho-social and (2) the educational
  • Coping with Tourette Syndrome In the Classroom (cont.)
    • Self Esteem
    • Foster feelings of self-worth and self-esteem
    • Difficult but not impossible….a teacher who is sensitive to the student’s need to feel good about him/herself can find lots of opportunities to promote those feelings
    • By showing acceptance and appreciation of a child with TS, the student accepts and likes him/herself. Teachers are role models for others, especially other students within the classroom
  • Coping with Tourette Syndrome In the Classroom (cont.)
    • Suggestions for increasing a student’s self-image
    • Use praise for good work –stress positive things, e.g. a student who has severe handwriting problems; comment that writing looks better than last paper submitted and compliment the good effort involved or stress the number of correct responses on a test, quiz, etc. rather than the number incorrect
  • Coping with Tourette Syndrome In the Classroom (cont.)
    • Compassion
    • Alternative methods for handling social situations can transfer to the greater education setting, e.g. cafeteria, playground, other classes, etc.
    • A knowledgeable teacher who shares information can help larger groups towards acceptance rather than ridicule and fear
  • Coping with Tourette Syndrome In the Classroom (cont.)
    • Associated difficulties with TS
    • In addition to uncontrollable movements and noises, some TS students have the follow accompanying issues:
    • Associated Disorders
      • Learning Disabilities- – General characteristics of child with LD which include: normal intelligence but experiencing difficulties assimilating and remembering information in the same manner as other students
  • Coping with Tourette Syndrome In the Classroom (cont.)
      • Associated difficulties with TS
      • Attention Deficit Hyperactivity Disorder—high percentage of children with TS have problems with attention, activity and impulse control
      • Obsessive-Compulsive Behaviors—these are uncontrollable urges to complete certain rituals. In the classroom, this type of behavior can sometimes make it difficult to complete work in an efficient way.
  • Coping with Tourette Syndrome In the Classroom (cont.)
    • Treatment of Associated Disorders
    • Depending of the severity of the associated disorders, several different interventions may be used:
    • Medication
    • Psychotherapy
    • Special Education Placement
    • Behavior Modification – this is used to deal only with specific behavior problems. There is no evidence that behavior modification can reduce tics
    • Supportive counseling, at times, to help them deal with the social and physical impact of their symptoms (as with any child with a chronic medical condition)
  • Coping with Tourette Syndrome In the Classroom (cont.)
    • The “Typical” Child with Tourette Syndrome There is no “typical” child with Tourette Syndrome Each child is unique
    • The child with TS is a unique individual with some symptoms of a neurological disorder
  • Coping with Tourette Syndrome In the Classroom (cont.)
    • Children with TS reflect the normal intelligence curve
    • They can be artistically talented, exceptional athletes, be charming, have excellent sense of humor, serious and/or scholarly
    • Teachers who see the child and not just the symptoms are terribly important to the successful development of a balanced, positive self-image for the child with TS
  • Coping with Tourette Syndrome In the Classroom (cont.)
    • Dealing with Tics
    • For some teachers the only aspect of dealing with TS will be dealing with tics
    • Teacher’s response to tics and his/her reactions to other children’s concerns about them can make a critical difference
    • Teachers and other staff members who are involved with a TS student not only have a serious responsibility but a great opportunity to have a positive and lasting impact on the TS child’s adjustment and acceptance by peers
  • Coping with Tourette Syndrome In the Classroom (cont.)
    • Classroom Tips
    • For annoying and disruptive movements/noises –REMEMBER that they are occurring involuntarily. PLEASE DO NOT REACT WITH ANGER OR ANNOYANCE!! Consider using patience since reprimanding a TS student is like disciplining a child with Cerebral Palsy for being clumsy. As a teacher you are modeling the way to react to tics—your tolerance may become contagious and the student with TS will not be ridiculed
  • Coping with Tourette Syndrome In the Classroom (cont.)
    • Classroom Tips (Cont.)
    • 2. Provide the student with opportunities for short breaks out of the classroom. A private place may be the comfortable place to “let out the tics.” Although some students with TS can and want to suppress their tics for a time; however, they eventually must express them. These short time-out periods may also enhance the child’s ability to focus on schoolwork, because he/she is not using all his/her energy to suppress the tics
  • Coping with Tourette Syndrome In the Classroom (cont.)
    • Classroom Tips (Cont.)
    • Allow the student with TS to take tests in a private room to help reduce wasted energy on suppressing the tics during a very quiet time in the classroom (stress can induce tics)
    • Allow staff such as guidance counselors, psychologist and other knowledge personnel to provide information and appropriate audiovisual materials for students and colleagues. By educating and helping others, especially other students, understand about tics there is less chance of ridicule and teasing behavior
  • Coping with Tourette Syndrome In the Classroom (cont.)
    • 5. For student’s whose tics are particularly disruptive, have the student present information in a different manner rather than reciting in front of the class
    • Remember students with TS are as frustrated as the teacher about those annoying and disruptive nature of tics
  • Coping with Tourette Syndrome In the Classroom (cont.)
    • Dealing with Writing Problems
    • A significant percentage of students with TS also have visual-motor integration problems so tasks that require a lot of copying are very difficult and time consuming. Copying tasks in reality can be overwhelming to students with TS (they are not lazy or avoiding work). Accommodations that can help children with writing difficulties include:
  • Coping with Tourette Syndrome In the Classroom (cont.)
    • Dealing with Writing Problems (Cont.)
    • Modifying written assignments by: having the child copy down and complete every other problem on a page of math; allowing the child to present a report on tape or orally rather than in writing; allowing a parent or another adult to copy down work or act as a “scribe” so that the student can dictate his/her ideas to facilitate concept formation. It helps to focus on what the student has mastered and not the quantity of written work produced.
  • Coping with Tourette Syndrome In the Classroom (cont.)
    • Dealing with Writing Problems (cont.)
    • If a student with visual-motor problems may not be able to write quickly enough to get important information on paper, assign a “note-taking buddy” or “homework partner” – whose notes can be copied. The homework buddy should be a reliable student who can be called to make sure about assignments. Be sure to work this out DISCREETLY so that the student with TS does not feel singled out or different
  • Coping with Tourette Syndrome In the Classroom (cont.)
    • Dealing with Writing Problems (cont.)
    • For tests that have computer scoring sheets, allow the student to write on the test booklet. This avoids confusion about using a grid-like answer sheet.
    • Whenever possible, allow as much time as needed for test(s) taking. Another setting rather than the classroom may be appropriate
  • Coping with Tourette Syndrome In the Classroom (cont.)
    • Dealing with Writing Problems (cont.)
    • Students who have visual-motor problems are very often poor spellers. Use a modified grading system—do not penalize for spelling errors, but encourage proof-reading and the use of a word processor with spell checkers
    • Grade handwriting based on effort
  • Coping with Tourette Syndrome In the Classroom (cont.)
    • For those students who have special problems with written math:
      • Encourage the use of manipulative in teaching math
      • Encourage the use of a calculator to perform rote calculations
      • Use grid paper with large boxes or turning regular lined paper sideways to form columns to help maintain straight columns when calculating
  • Coping with Tourette Syndrome In the Classroom (cont.)
    • Dealing with Language Problems— General and TS Related
    • Some students with TS have symptoms that affect language. There are 2 types: language based learning problems that are common to other children and language problems that are specifically associated with the tics of TS
  • Coping with Tourette Syndrome In the Classroom (cont.)
    • Dealing with Language Problems—General and TS Related (cont)
    • For language processing problems that relate to general learning disabilities
    • Provide visual input as well as auditory whenever possible, e.g. provide written directions as well as oral ones; have a copy of a lecture outline to follow while listening to instructions; pictures & graphs that illustrate the text are usually quite helpful
    • Give directions one or two steps at a time. When possible, ask the student to repeat the instructions back. Check work to see if the first several are done correctly
  • Coping with Tourette Syndrome In the Classroom (cont.)
    • Dealing with Language Problems—General and TS Related (cont)
    • If student mumbles while working, try suggesting a seat where he/she will not disturb others (preferential seating). Sometimes quietly “reauditorizing” instructions or information to themselves can help students grasp and remember the assignment.
    • BEING FLEXIBLE CAN MAKE A HUGE DIFFERENCE FOR STUDENTS WITH TS
  • Coping with Tourette Syndrome In the Classroom (cont.)
    • Dealing with Language Problems—General and TS Related (cont)
    • Language problems that are unique to children with TS include:
    • Repetition of their own words or those of someone else. This symptom sounds like stuttering but actually involves the utterance of words or whole phrase. Be aware that other students may exploit this problem by whispering or saying inappropriate things to that the TS student will involuntarily repeat them and get into trouble.
  • Coping with Tourette Syndrome In the Classroom (cont.)
    • Dealing with Language Problems—General and TS Related (cont)
    • Additionally, this urge to repeat can be seen in reading and an/or writing activities. Students with TS may not be able to complete work because they “get stuck” re-reading or rewriting one word over and over again (this is called “looping.”) Monitor and when this occurs consider using the following:
    • Have the student take a short break or switch to other work
  • Coping with Tourette Syndrome In the Classroom (cont.)
    • Dealing with Language Problems—General and TS Related (cont)
    • When reading, give the student a note cared with a cut out “window” that displays only one word at a time. The student slides the window along while reading so the previous word is covered and the chances of getting stuck are reduced.
    • When writing, have the student use pencil or pen without an eraser or allow the student to complete the work orally. Occasional reminders to move on may help.
  • Coping with Tourette Syndrome In the Classroom (cont.)
    • Dealing with Attention Problems
    • In addition to learning difficulties, many TS students have varying degrees of attention deficit hyperactivity disorder (ADHD). As already stated, medical treatment for this problem in TS children IS complicated. Even with medication intervention, some still may have difficulty maintaining focus.
  • Coping with Tourette Syndrome In the Classroom (cont.)
    • As a teacher you may want to consider using the following approaches:
    • Preferential seating to minimize the visual distractions
    • 2. Allow the student to work in a “quiet” place, e.g. the library
  • Coping with Tourette Syndrome In the Classroom (cont.)
    • Dealing with Attention Problems (cont.)
    • Allow the student to work in short intense periods with breaks to run errands or simply wiggle in the seat. Change tasks frequently.
    • Contract for work to be done in advance. A specific number of problems should be finished by a certain reasonable time. Be realistic. Short assignments with frequent checks are more effective
  • Coping with Tourette Syndrome In the Classroom (cont.)
    • Dealing with Attention Problems (cont.)
    • 5. With younger children, simple gestures, such as placing your hand on the student’s shoulder, can be a helpful reminder to focus during listening periods.
  • Coping with Tourette Syndrome In the Classroom (cont.)
    • Do TS students need special education?
    • Some may need special education services due to associated learning and behavioral disorders; however, the disruptive nature of the tics alone is not a reason to exclude a child from a general education classroom. Individuals should have a full evaluation by professionals familiar with TS before being considered for special education services.
  • Treatment for TS
    • Psychological Counseling
    • Behavioral Therapy
    • Medications
    • Alternative Therapies
    • Understanding and support from peers and adults
  • Significant Modifications in School
    • Handout
    • KISS
    • Location of seat in class
    • Retreat – the health room
    • Education of peers – Danya project; TSAGW
    • Teacher presentations
    • Teacher sets the tone of acceptance in the classroom
    • Having a buddy
  • Reasonable Accommodations
      • extra time on tests
      • access to computer or Alphasmart for written work
      • handwriting not graded
      • student may leave the classroom to express tics
      • break assignments into smaller “chunks”
      • reduced homework
      • use of calculator
      • daily check of assignment book
      • extra set of books at home
      • frequent breaks
      • preferred seating near teacher
  • Expectations for Educational Outcomes
    • Same as for other students
    • Maybe extra support
    • May need
      • IEP
      • 504
  • Bibliography
    • Tourette Syndrome Association
    • of Greater Washington [serves VA, MD, DC, WV]
    • Phone: 301-681-4133 Email: [email_address]
    • Journal of Learning Disabilities, Vol. 24, No. 1, Jan 1991
    • “ Coping with Tourette Syndrome,” Judy Wertheim, Tourette Syndrome Association, Inc., March 1982