Georges Gilles de la Georges Gilles de la

TouretteTourette

Tourette’s Syndrome: Overcoming Tourette’s Syndrome: Overcoming the Mythsthe Myths

An informational presentationAn informational presentationdesigned to raise awareness in designed to raise awareness in the educational communitythe educational communityabout Tourette Syndrome.about Tourette Syndrome.

The artwork used in this The artwork used in this presentation are actualpresentation are actualdrawings and descriptions drawings and descriptions created by children with created by children with Tourette Syndrome.Tourette Syndrome.

Designed by Paul BironDesigned by Paul Biron

For Lynn SiegelFor Lynn Siegel

What we think we know about What we think we know about Tourette’sTourette’s

1. A student with Tourette’s Syndrome will 1. A student with Tourette’s Syndrome will make obvious and disfiguring physical make obvious and disfiguring physical movements.movements.

2.2. A student with Tourette’s Syndrome will A student with Tourette’s Syndrome will shout obscenities.shout obscenities.

3.3. A student with Tourette’s Syndrome will A student with Tourette’s Syndrome will have tics that are uncontrollable and have tics that are uncontrollable and disruptive.disruptive.

4. A student with Tourette’s Syndrome will 4. A student with Tourette’s Syndrome will have serious psychological and behavioral have serious psychological and behavioral problems problems.

Some of the Myths and Fallacies Some of the Myths and Fallacies About Tourette’s Syndrome (TS)About Tourette’s Syndrome (TS)

Fallacy #1: Tourette Syndome is rare.Fallacy #1: Tourette Syndome is rare.

Fallacy #2: Shouting obscenities is a defining Fallacy #2: Shouting obscenities is a defining characteristic.characteristic.

Fallacy #3: Patients are easily recognized by Fallacy #3: Patients are easily recognized by their tics.their tics.

Fallacy #4: Primary presenting complaint is Fallacy #4: Primary presenting complaint is always tics.always tics.

Fallacy #5: Diagnosis is catastrophic for most Fallacy #5: Diagnosis is catastrophic for most patients.patients.

Diagnostic Criteria for Tourette’s Diagnostic Criteria for Tourette’s SyndromeSyndrome

• Both multiple motor and one or more vocal tics have been Both multiple motor and one or more vocal tics have been present atpresent at sometime during the illness, although not necessarily sometime during the illness, although not necessarily concurrently.concurrently.

• The tics occur many times a day (usually in bouts) nearly The tics occur many times a day (usually in bouts) nearly every day every day or intermittently throughout a period of more than one year. or intermittently throughout a period of more than one year.

• The onset is before 18 years.The onset is before 18 years.

• The disturbance is not due to the direct physiological effects The disturbance is not due to the direct physiological effects of a of a substance (e.g., stimulants) or a general medical condition. substance (e.g., stimulants) or a general medical condition.

Simple TicsSimple Tics

Motor Motor PhonicPhonic Eye BlinkingEye Blinking Nose WrinklingNose Wrinkling Jaw ThrustingJaw Thrusting Facial GrimacingFacial Grimacing Shoulder ShruggingShoulder Shrugging Wrist SnappingWrist Snapping Neck/Limb JerkingNeck/Limb Jerking Abdominal TensingAbdominal Tensing

Sniffing/CoughingSniffing/Coughing Grunting/ SnortingGrunting/ Snorting Throat ClearingThroat Clearing BlowingBlowing ChirpingChirping ClickingClicking Sucking SoundsSucking Sounds ScreamingScreaming

Complex TicsComplex Tics

Motor Motor PhonicPhonic Hand GesturesHand Gestures Jumping/SquattingJumping/Squatting Touching/PressingTouching/Pressing StompingStomping Facial ContortionsFacial Contortions Repeatedly Smelling an Repeatedly Smelling an

ObjectObject Deep Knee BendsDeep Knee Bends Retracing StepsRetracing Steps Twisting When WalkingTwisting When Walking

Singing Words or PhrasesSinging Words or Phrases Speech Blocking (e.g. stutteringSpeech Blocking (e.g. stuttering or other interruption to speech)or other interruption to speech) Meaningless Changes in Pitch, Meaningless Changes in Pitch,

Emphasis, or Volume of SpeechEmphasis, or Volume of Speech Palilalia (repeating one’s own Palilalia (repeating one’s own

sounds or words)sounds or words) Echolalia (repeating the last-Echolalia (repeating the last-

heard sound, word, or phrase)heard sound, word, or phrase) Coprolalia (inappropriate Coprolalia (inappropriate

expression of a socially expression of a socially unacceptable word or obscenity)unacceptable word or obscenity)

Click here to listen to presentation by Susan Conners, TSA Education Specialist

Susan Conners, M.Ed., Education Specialist, Tourette Syndrome Association

Comordid Conditions that Comordid Conditions that ComplicateComplicatethe Management of Tourette the Management of Tourette SyndromeSyndrome Attention Deficit Hyperactivity Disorder Attention Deficit Hyperactivity Disorder

(ADHD)(ADHD) Obsessive Compulsive Behaviors or Obsessive Compulsive Behaviors or

Disorder (OCD)Disorder (OCD) Oppositional Defiant Disorder (ODD)Oppositional Defiant Disorder (ODD) Mood and Sleep disordersMood and Sleep disorders Executive dysfunctionsExecutive dysfunctions Self-injurious behaviorsSelf-injurious behaviors Personality disordersPersonality disorders

Dispelling Some of the Fallacies Dispelling Some of the Fallacies About Tourette’s SyndromeAbout Tourette’s SyndromeFallacy #1: Tourette Syndome is rare.

Fact:Fact: Tourette’s occurs in about 1% of child population.

Fallacy #2: Shouting obscenities is a defining characteristic.

Fact:Fact: Relatively few TS patients yell obscenities (Caprolalia).

Fallacy #3: Patients are easily recognized by their tics.

Fact:Fact: Tics can be suppressed.

Fallacy #4: Primary presenting complaint is Fallacy #4: Primary presenting complaint is always tics.always tics.

Fact:Fact: Presenting complaint is often Presenting complaint is often complications from a complications from a comorbid comorbid condition ( i.e. ADHD, OCD, LD, ODD).condition ( i.e. ADHD, OCD, LD, ODD).

Fallacy #5: Diagnosis is catastrophic for most Fallacy #5: Diagnosis is catastrophic for most patients.patients.

Fact:Fact: Diagnosis for most patients is a relief Diagnosis for most patients is a relief and the and the understanding it brings after a understanding it brings after a prolonged periodprolonged period of uncertainty. of uncertainty.

TS in the Educational TS in the Educational EnvironmentEnvironment

““Red Flag” Red Flag” Indicators of Indicators of Possible TS in Possible TS in StudentsStudents

1.1.Motor and phonic Tics.Motor and phonic Tics.

2.2.Poor academic performance.Poor academic performance.

3.3.Very poor or sloppy handwriting.Very poor or sloppy handwriting.

4.4.Appears disorganized.Appears disorganized.

5.5.Difficulty sustaining attention.Difficulty sustaining attention.

6.6.Difficulty copying things Difficulty copying things correctly from board, no matter correctly from board, no matter how hard they try.how hard they try.

Physical ManifestationsPhysical Manifestations

Understanding tics:Understanding tics: Tics are an irresistible urgeTics are an irresistible urge Tics change over timeTics change over time Often there are periods with no tics Often there are periods with no tics Control of tics varies from day to dayControl of tics varies from day to day Control of tics varies from child to Control of tics varies from child to

childchild ““Being nervous” does not cause tics, Being nervous” does not cause tics,

although stress can make them work.although stress can make them work.

Tics are an irresistible Tics are an irresistible urge!urge!

Vocal ManifestationsVocal Manifestations

Understanding Understanding vocalizations/verbalizations:vocalizations/verbalizations:

• Uncontrollable.Uncontrollable.

• Explicit verbal outbursts of words or Explicit verbal outbursts of words or phrases.phrases.

• Outbursts of sounds, quiet or Outbursts of sounds, quiet or explosive.explosive.

• Outbursts erupt without warning.Outbursts erupt without warning.

• Include palilalia (repeating one’s Include palilalia (repeating one’s own words), own words), echolalia echolalia (repeating the words of others), or (repeating the words of others), or caprolalia ( uncontrollable uttering of caprolalia ( uncontrollable uttering of

obscenities or socially obscenities or socially unacceptable words).unacceptable words).

Psychological Psychological ManifestationsManifestations

Related disorders/issues:Related disorders/issues:

• Learning DisabilitiesLearning Disabilities

• ADD and ADHDADD and ADHD

• OCD and ODDOCD and ODD

• Mood and sleep disordersMood and sleep disorders

• Personality disorders.Personality disorders.

• Self-injurious behaviors.Self-injurious behaviors.

Click here to listen to presentation Click here to listen to presentation by by Susan Conners, TSA Education Susan Conners, TSA Education SpecialistSpecialist

Susan Conners, M.Ed., Education Specialist, Tourette Susan Conners, M.Ed., Education Specialist, Tourette Syndrome AssociationSyndrome Association

Social ManifestationsSocial ManifestationsPossible related issues:Possible related issues:

• Fine motor and and visual motor Fine motor and and visual motor deficitsdeficits

• Behavioral disordersBehavioral disorders

• Aggressive behaviorAggressive behavior

• Explosive reactions/temperExplosive reactions/temper

• Social isolationSocial isolation

• ImpulsiveImpulsive

Evaluation and Assessment Evaluation and Assessment of TSof TS

1.1.Complete medical physical (after age Complete medical physical (after age 9)9)

2.2.Complete medical historyComplete medical history

3.3.Complete scholastic historyComplete scholastic history

4.4.Psychological, cognitive, and Psychological, cognitive, and behavioral evaluationbehavioral evaluation

5.5.Separate parent and student Separate parent and student interviews (especially with interviews (especially with adolescents)adolescents)

Understanding a TS Student in the Understanding a TS Student in the Classroom/School EnvironmentClassroom/School Environment

Click here to listen to Click here to listen to interview with a 16 year-old interview with a 16 year-old with Tourette Syndrome.with Tourette Syndrome.

Excerpt from interview with Kevin, a 16 year-old with Excerpt from interview with Kevin, a 16 year-old with Tourette SyndromeTourette Syndrome

Recommendations for TeachersRecommendations for Teachers

1.1.Look at the whole child not the Look at the whole child not the disorder!disorder!

2.2.Tics can increase in frequency if Tics can increase in frequency if attention is drawn to them attention is drawn to them (suggestibility).(suggestibility).

3.3.Try to ignore the tics if possible.Try to ignore the tics if possible.

4.4.Don’t scold or correct for tics!Don’t scold or correct for tics!

5.5.Educate other children (and staff) in Educate other children (and staff) in classroom about Tourette’s classroom about Tourette’s Syndrome.Syndrome.

6.6.Children with TS need intellectual Children with TS need intellectual stimulation!stimulation!

Modifications in Classroom Modifications in Classroom SettingSetting

1.1.Create and sustain a positive, Create and sustain a positive, accepting attitude in the accepting attitude in the classroom.classroom.

2.2.Foster a sense of competence and Foster a sense of competence and accomplishment.accomplishment.

3.3.Preferential seating for close Preferential seating for close teacher attention (take types of teacher attention (take types of tics into consideration of tics into consideration of placement).placement).

4.4.Consider testing privately and Consider testing privately and waive time limits.waive time limits.

5. The use of a computer or word 5. The use of a computer or word processor (alternatives to hand processor (alternatives to hand writing).writing).

6. Frequent breaks out of the 6. Frequent breaks out of the classroom to release tics.classroom to release tics.

7. Assignments broken into more 7. Assignments broken into more manageable pieces.manageable pieces.

8. Use of a daily assignment sheet 8. Use of a daily assignment sheet verified by teacher.verified by teacher.

9. Mandatory in-service for all 9. Mandatory in-service for all teachers and staff working with teachers and staff working with child.child.

10. 10. Allow opportunities for physical Allow opportunities for physical movement movement throughout day school throughout day school day.day.

11. 11. Lower classroom stress levels as Lower classroom stress levels as much as much as possible.possible.

12. 12. Establish a moderately Establish a moderately structured learning structured learning environment.environment.

13.13. Work on socialization skills with Work on socialization skills with child.child.

14. Caution should be used in 14. Caution should be used in interpreting I.Q. interpreting I.Q. scores as scores as estimates of cognitive potential.estimates of cognitive potential.

Click here to listen to interview Click here to listen to interview with a 16 with a 16 year-old with Tourette year-old with Tourette Syndrome.Syndrome.

Excerpt from interview with Kevin, a 16 year-old with Tourette Syndrome

The Most Important Factor:The Most Important Factor: Parental Involvement in the Parental Involvement in the Educational ProcessEducational Process• Open lines of communication Open lines of communication between school between school and home and home (parents)(parents)

• Frequent calls, letters, and daily Frequent calls, letters, and daily notes to notes to parents about child’s parents about child’s progressprogress

• Educate yourself about Tourette’s Educate yourself about Tourette’s Syndrome Syndrome and its related and its related componentscomponents

• Frequent visits by parents to Frequent visits by parents to school/classroomschool/classroom

Resources:Resources: It’s Not Just The Tics: Classroom Learning and Behavioral Issues with It’s Not Just The Tics: Classroom Learning and Behavioral Issues with

Tourette Syndrome Tourette Syndrome ; Linda Abbott, RN, MSN, Barbara Baron, Ph.D.,; Linda Abbott, RN, MSN, Barbara Baron, Ph.D.,

Louise S. Kiessling, MD, FAAP; Department of Pediatrics, Memorial Louise S. Kiessling, MD, FAAP; Department of Pediatrics, Memorial Hospital of Rhode Island; Pawtucket, Rhode IslandHospital of Rhode Island; Pawtucket, Rhode Island

Tourette Syndrome Association (TSA); http://tsa-usa.orgTourette Syndrome Association (TSA); http://tsa-usa.org Learning Problems and the Student with TSLearning Problems and the Student with TS ; Susan Conners, M.Ed., ; Susan Conners, M.Ed.,

Education Specialist, TSA,Inc.Education Specialist, TSA,Inc. Teaching Children with Tourette SyndromeTeaching Children with Tourette Syndrome; ERIC Digest E570; ERIC Digest E570 Tourette Syndrome in the ClassroomTourette Syndrome in the Classroom; Judy Wertheim, M.S.; A TSA; Judy Wertheim, M.S.; A TSA

Education PublicationEducation Publication Interview with Susan Conners, M.Ed.,TSA Education SpecialistInterview with Susan Conners, M.Ed.,TSA Education Specialist Taped Presentation by Susan Conners, M.Ed.,TSA Education SpecialistTaped Presentation by Susan Conners, M.Ed.,TSA Education Specialist Taped interview with Kevin Siegel, 16 year-old with Tourette Taped interview with Kevin Siegel, 16 year-old with Tourette

SyndromeSyndrome