Tourette Tourette SyndromeSyndrome (TS) (TS)

Dana BarvinchakDana Barvinchak

““An Overview of Tourette Syndrome for An Overview of Tourette Syndrome for Teachers”Teachers”

Learner ObjectivesLearner Objectives

Participants who complete this seminar will Participants who complete this seminar will be able to:be able to:

Define symptoms and characteristics of Define symptoms and characteristics of Tourette’sTourette’s

List positive ways to address behaviors List positive ways to address behaviors related to Tourette Syndrome in the related to Tourette Syndrome in the classroomclassroom

List necessary supports that a student List necessary supports that a student with Tourette’s may need in the classroomwith Tourette’s may need in the classroom

GlossaryGlossary Attention deficit disorder (ADD)Attention deficit disorder (ADD) – characterized – characterized

by short attention span and impulsivityby short attention span and impulsivity

Attention deficit hyperactivity disorder (ADHD)Attention deficit hyperactivity disorder (ADHD) – similar to ADD but with a hyperactive component– similar to ADD but with a hyperactive component

Co-morbidityCo-morbidity – Two or more diagnoses occurring – Two or more diagnoses occurring simultaneouslysimultaneously

DSM – IV-TRDSM – IV-TR – Diagnostic and Statistical Manual – Diagnostic and Statistical Manual of Mental Disorders (4of Mental Disorders (4thth edition) edition) Provides categories and diagnostic criteria for Provides categories and diagnostic criteria for

various disorders or mental health diagnosesvarious disorders or mental health diagnoses

Glossary ContinuedGlossary Continued ““Tic”Tic” –– involuntaryinvoluntary body movements and/or body movements and/or

vocalizationsvocalizations

CoproialiaCoproialia – use of obscene words or phrases – use of obscene words or phrases

CopropraxiaCopropraxia – use of unacceptable gestures – use of unacceptable gestures

Obsessive Compulsive DisorderObsessive Compulsive Disorder – characterized by – characterized by persistent thoughts or compulsions to perform certain persistent thoughts or compulsions to perform certain acts…feelings that you MUST complete a certain routine acts…feelings that you MUST complete a certain routine in a certain way or a set number of timesin a certain way or a set number of times

Health A to Z (2006). Tourette syndrome. Retrieved September 13, 2007, from Health A to Z (2006). Tourette syndrome. Retrieved September 13, 2007, from http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/ency/tourette_syndrome.jsp

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HistoryHistory Gilles de la Tourette was a French neurologist .Gilles de la Tourette was a French neurologist .

Provided the first formal description of Tourette’s Provided the first formal description of Tourette’s Syndrome in 1885Syndrome in 1885

Defined it as an inherited neurological Defined it as an inherited neurological disorder characterized by the presence of disorder characterized by the presence of vocal and motor ticsvocal and motor tics

Prior to this, people with tics were believed to have Prior to this, people with tics were believed to have been possessed by the devil.been possessed by the devil.

Health A to Z (2006). Tourette syndrome. Retrieved September 13, 2007, from Health A to Z (2006). Tourette syndrome. Retrieved September 13, 2007, from http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/ency/tourette_syndrome.jsp

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DefinitionDefinition

Diagnostic criteria includes:Diagnostic criteria includes: presence of multiple motor AND one or more presence of multiple motor AND one or more

vocal ticsvocal tics symptoms occur nearly every day or symptoms occur nearly every day or

intermittently for a period of one yearintermittently for a period of one year impairs functioningimpairs functioning childhood onsetchildhood onset symptoms not related to medications or another symptoms not related to medications or another

medical conditionmedical condition

Bagheri, M.M., Kerbeshian, J., & Burd, L. (1999). Recognition and management of tourette’s syndrome and tic disorders. America Family Physician. Retrieved

September 13, 2007, from http://www.aafp.org/afp/990415ap/2263.html.

Examples of ticsExamples of tics

Simple TicsSimple Tics

VocalVocal-Throat clearing-Throat clearing

-Sniffing-Sniffing

-Barking-Barking

-Coughing-Coughing

-Yelling-Yelling

-Hiccupping-Hiccupping

-Belching-Belching

-Animal sounds-Animal sounds

MotorMotor-Eye blinking-Eye blinking

-Sticking tongue out-Sticking tongue out

-Head turning-Head turning

-Muscle tensing-Muscle tensing

-Flexing fingers-Flexing fingers

-Kicking-Kicking

Complex TicsComplex Tics

Vocal Vocal -Repeating parts of -Repeating parts of words or phraseswords or phrases

-Talking to self-Talking to self

-Different intonations-Different intonations

-Obscene word usage-Obscene word usage

Motor Motor -Flapping arms-Flapping arms

-Facial grimacing-Facial grimacing

-Adjusting or picking -Adjusting or picking at clothingat clothing

-Jumping-Jumping

-Shaking feet-Shaking feet

-Pinching-Pinching

-Poking-Poking

-Kissing-Kissing

-Spitting-Spitting

Bagheri, M.M., Kerbeshian, J., & Burd, L. (1999). Recognition and management of tourette’s syndrome and tic disorders. American Family Physician. Retrieved September 13, 2007, from http://www.aafp.org/afp/990415ap/2263.html.

PrevalencePrevalence Occurs 3 to 4 more times in boys than Occurs 3 to 4 more times in boys than

girls girls Affects 1 in 1,000 or .10% of the Affects 1 in 1,000 or .10% of the

population of the United Statespopulation of the United States Symptoms first noticed in childhoodSymptoms first noticed in childhood Occurs in all populations and all ethnic Occurs in all populations and all ethnic

groupsgroups

Health A to Z (2006). Tourette syndrome. Retrieved September 13, 2007, from Health A to Z (2006). Tourette syndrome. Retrieved September 13, 2007, from http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/ency/tourette_syndrome.jsp..

How we identify/diagnose the How we identify/diagnose the

problemproblem

Diagnosis is made through observations and Diagnosis is made through observations and interviews with the patient and caregiver(s), interviews with the patient and caregiver(s), examination of family history, and ruling out examination of family history, and ruling out other secondary causes of tics.other secondary causes of tics.

Wikipedia. Tourette syndrome. Retrieved October 31, 2007, from Wikipedia. Tourette syndrome. Retrieved October 31, 2007, from http://en.wikipedia.org/wiki/Tourette_syndrome..

Factors Complicating Factors Complicating DiagnosisDiagnosis People with Tourette’s often present with an People with Tourette’s often present with an

extreme range of symptoms – often misdiagnosed extreme range of symptoms – often misdiagnosed or under-diagnosedor under-diagnosed

People with Tourette’s may also be diagnosed People with Tourette’s may also be diagnosed with or have symptoms of :with or have symptoms of :

ADD/ADHD (approx. 50%)ADD/ADHD (approx. 50%) AnxietyAnxiety DepressionDepression Learning Disabilities (approx. 25-30%)Learning Disabilities (approx. 25-30%) OCD (approx. 25-40%)OCD (approx. 25-40%) *Examples of co-morbid diagnosis*Examples of co-morbid diagnosis

Bagheri, M.M., Kerbeshian, J., & Burd, L. (1999). Recognition and Bagheri, M.M., Kerbeshian, J., & Burd, L. (1999). Recognition and management of tourette’s syndrome and tic disorders. management of tourette’s syndrome and tic disorders. American Family American Family Physician.Physician. Retrieved September 13, 2007, from Retrieved September 13, 2007, from http://www.aafp.org/afp/990415ap/2263.html..

Biological factorsBiological factors

Research has shown a genetic Research has shown a genetic predisposition in relation to Tourette’spredisposition in relation to Tourette’s

Specific gene is not known presentlySpecific gene is not known presently Not everyone that inherits the genetic vulnerability Not everyone that inherits the genetic vulnerability

will show symptomswill show symptoms

Inherited neurological disorderInherited neurological disorder Neurotransmitter, dopamine, found in Neurotransmitter, dopamine, found in

excessexcess

Bagheri, M.M., Kerbeshian, J., & Burd, L. (1999). Recognition and management of Bagheri, M.M., Kerbeshian, J., & Burd, L. (1999). Recognition and management of tourette’s syndrome and tic disorders. tourette’s syndrome and tic disorders. American Family Physician.American Family Physician. Retrieved Retrieved September 13, 2007, from September 13, 2007, from http://www.aafp.org/afp/990415ap/2263.html..

Family factorsFamily factors

Parenting style will impact the Parenting style will impact the frequency in which the tic occurs.frequency in which the tic occurs.

Family support tremendously Family support tremendously important!!important!!

Families must also be their child’s Families must also be their child’s advocate.advocate.

School factorsSchool factors

Are there school factors that may Are there school factors that may cause the tic to intensify?cause the tic to intensify?

YES!YES!Anxiety, Stress, and FatigueAnxiety, Stress, and Fatigue

School FactorsSchool Factors

How should a teacher properly How should a teacher properly discipline the behavior?discipline the behavior?

DON’T DO IT!DON’T DO IT!Disciplining the behavior is Disciplining the behavior is NOT going to reduce the NOT going to reduce the frequency of the tic!frequency of the tic!

School FactorsSchool Factors

Teasing and bullying occur…tic Teasing and bullying occur…tic behavior increases…teasing and behavior increases…teasing and bullying increases – Vicious cycle!bullying increases – Vicious cycle!

BREAK THE CYCLE!BREAK THE CYCLE!

How the problem affects How the problem affects school lifeschool life

Depends on the specific child and his/her Depends on the specific child and his/her specific strengths and weaknessesspecific strengths and weaknesses

Most children with Tourette’s will need some Most children with Tourette’s will need some type of academic accommodation or type of academic accommodation or necessary support.necessary support.

Accommodation for visual-motor integration Accommodation for visual-motor integration problemsproblems– Assign a buddy as a “note taker” or – Assign a buddy as a “note taker” or “homework partner,” allow extra time for test taking, “homework partner,” allow extra time for test taking, allow use of a calculator for rote calculations, etc.allow use of a calculator for rote calculations, etc.

Accommodation for language problemsAccommodation for language problems – provide – provide visual input as well as auditory whenever possible, visual input as well as auditory whenever possible, repeat directions and then have student repeat them repeat directions and then have student repeat them again, when reading give the child a card with a cut out again, when reading give the child a card with a cut out “window” so that they are only viewing one word at a “window” so that they are only viewing one word at a time, etc.time, etc.

How the problem affects How the problem affects school lifeschool life

Accommodation for attention problemsAccommodation for attention problems – – seat the child in front of the teacher, seat the seat the child in front of the teacher, seat the child away from windows and doors, short child away from windows and doors, short assignments with frequent checks, etc.assignments with frequent checks, etc.

Knoblauch, B. (1998). Teaching children with tourette syndrome. Knoblauch, B. (1998). Teaching children with tourette syndrome. ERIC Digest. ERIC Digest. Retrieved September 13, 2007, from Retrieved September 13, 2007, from http://www.ericdigests.org/1999-4/tourette.htm..

Legal safeguards in Legal safeguards in PennsylvaniaPennsylvania

Students with Tourette Syndrome Students with Tourette Syndrome would be covered under Section 504 of would be covered under Section 504 of

the Rehabilitation Act of 1973.the Rehabilitation Act of 1973.■■The school district must provide “necessary supports” for The school district must provide “necessary supports” for the child to participate in the educational programs at the the child to participate in the educational programs at the

schoolschool■■Equal access to all extracurricular school programs and Equal access to all extracurricular school programs and activitiesactivities

*Students with more severe tic behaviors may need further *Students with more severe tic behaviors may need further supports through the use of an Individualized Education supports through the use of an Individualized Education Plan.Plan.

Education Law Center. A comparison of the rights of a child with a disability Education Law Center. A comparison of the rights of a child with a disability who needs “special education” and a child who is a “protected handicapped who needs “special education” and a child who is a “protected handicapped student.” student.”

What YOU can do to What YOU can do to helphelp

Remember: People with Tourette’s Remember: People with Tourette’s are not all alike!are not all alike!

Learn more about how Learn more about how Tourette’s impacts your Tourette’s impacts your student.student.

Talk to the student’s family about positive Talk to the student’s family about positive ways to handle school stress and what works ways to handle school stress and what works for the particular student.for the particular student.

What YOU can do to helpWhat YOU can do to help TOLERANCE!TOLERANCE! Ignore the ticsIgnore the tics Allow the student to have a permanent pass to Allow the student to have a permanent pass to

leave the classroom as needed so that he/she leave the classroom as needed so that he/she may “get the tics out” if/when they become may “get the tics out” if/when they become too overwhelmingtoo overwhelming

Provide a private place where the student can Provide a private place where the student can go to relax and/or release ticsgo to relax and/or release tics

Allow things to be completed through a Allow things to be completed through a different medium ---presentations that are different medium ---presentations that are videotaped at home if oral recitation is videotaped at home if oral recitation is problematic for the studentproblematic for the student

What YOU can do to helpWhat YOU can do to help

Provide the student with extra time on certain Provide the student with extra time on certain activities and/or the option to take a test in a activities and/or the option to take a test in a different locationdifferent location

Provide a peer education program (with Provide a peer education program (with permission from student and family) to reduce permission from student and family) to reduce any bullying of teasing. If this continues, any bullying of teasing. If this continues, provide additional adult supervision during provide additional adult supervision during the less structured times of the daythe less structured times of the day

Alternatives/reasonable accommodationsAlternatives/reasonable accommodations MODEL ACCEPTANCEMODEL ACCEPTANCE

What to avoidWhat to avoid Losing your patienceLosing your patience

Punishing the child for his/her ticPunishing the child for his/her tic Punishment will not make the tic go away. You are Punishment will not make the tic go away. You are

ultimately punishing the child for something that ultimately punishing the child for something that he/she cannot control.he/she cannot control.

Knoblauch, B. (1998). Teaching children with tourette syndrome. Knoblauch, B. (1998). Teaching children with tourette syndrome. ERIC Digest. ERIC Digest. Retrieved September 13, 2007, from Retrieved September 13, 2007, from http://www.ericdigests.org/1999-4/tourette.htm..

Tourette Syndrome “PLUS” (2005). Tips on dealing with tics in the classroom. Retrieved September 13, 2007, from Tourette Syndrome “PLUS” (2005). Tips on dealing with tics in the classroom. Retrieved September 13, 2007, from http://www.schoolbehavior.com/Files/tips_tourette.pdf..

PrognosisPrognosis Approximately 30% of people with Tourette’s Approximately 30% of people with Tourette’s

will have a decrease in the frequency and/or will have a decrease in the frequency and/or severity of the tic.severity of the tic.

Approximately 30 to 40% will completely Approximately 30 to 40% will completely lose all symptoms during late adolescence.lose all symptoms during late adolescence.

Majority of those diagnosed with Tourette’s Majority of those diagnosed with Tourette’s retain full time employment and pursue retain full time employment and pursue higher educationhigher education

Health A to Z (2006). Tourette syndrome. Retrieved September 13, 2007, from Health A to Z (2006). Tourette syndrome. Retrieved September 13, 2007, from http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/ency/tourette_syndrome.jsp. .

Wikipedia. Tourette syndrome. Retrieved October 31, 2007, from Wikipedia. Tourette syndrome. Retrieved October 31, 2007, from http://en.wikipedia.org/wiki/Tourette_syndrome..

Info for parentsInfo for parents

REMEMBER: You are NOT alone!REMEMBER: You are NOT alone! Learn about Tourette’s and openly Learn about Tourette’s and openly

explain the diagnosis to others explain the diagnosis to others involved in the child’s life.involved in the child’s life.

Remember that the behaviors are Remember that the behaviors are not intentional not intentional – Punishing the – Punishing the behavior will not make the behavior will not make the behavior go away!behavior go away!

Where you can get Where you can get more helpmore helphttp://www.mimh.nih.gov - tells you about - tells you about

federally funded research projects and findings federally funded research projects and findings on Tourette’son Tourette’s

http://www.tsa-usa.org – Tourette Syndrome – Tourette Syndrome Association, Inc. offers many resources Association, Inc. offers many resources (publications, videos, training sessions, etc. (publications, videos, training sessions, etc. that are aimed at helping students, parents, that are aimed at helping students, parents, families, and especially educators understand families, and especially educators understand Tourette’s as well as tips to properly handle the Tourette’s as well as tips to properly handle the symptoms – EXCELLENT resourcesymptoms – EXCELLENT resource

http://www.tourettesyndrome.net – Tourette – Tourette Syndrome “PLUS”Syndrome “PLUS”

Additional ResourcesAdditional Resources

I Have Tourette’s, but Tourette’s I Have Tourette’s, but Tourette’s Doesn’t Have MeDoesn’t Have Me

a documentary that appeared on HBO that a documentary that appeared on HBO that focused on children with Tourette’s as they go focused on children with Tourette’s as they go about their daily livesabout their daily lives

Gives a personal account of what their life is likeGives a personal account of what their life is like Video clip may be seen at Video clip may be seen at

http://www.tsa-usa.org/news/HBO_Release_apr06_update.htm - may also purchase entire DVD through this site - may also purchase entire DVD through this site

EXCELLENT resource!!!!EXCELLENT resource!!!!

ScenarioScenario Imagine that you are in a room with 20-30 of your peers and Imagine that you are in a room with 20-30 of your peers and

you are all silently reading a passage that you are about to be you are all silently reading a passage that you are about to be quizzed on. All of a sudden, you begin to feel a slight tickle in quizzed on. All of a sudden, you begin to feel a slight tickle in your throat and you feel that you need to cough. A few seconds your throat and you feel that you need to cough. A few seconds pass and it goes away and you are able to stay on task to finish pass and it goes away and you are able to stay on task to finish the assigned reading. Before you know it, that tickle is back the assigned reading. Before you know it, that tickle is back and even worse this time around. You NEED to cough, to let it and even worse this time around. You NEED to cough, to let it out, in the worst way. Your body naturally and involuntarily out, in the worst way. Your body naturally and involuntarily responds to the tickle in your throat by coughing. “NO!” you responds to the tickle in your throat by coughing. “NO!” you tell yourself. You are supposed to be paying attention to the tell yourself. You are supposed to be paying attention to the reading. Everyone else is going to be done and ready to move reading. Everyone else is going to be done and ready to move on and you will still be reading. Then everyone is going to on and you will still be reading. Then everyone is going to tease you for being a slow reader. BUT YOU NEED TO tease you for being a slow reader. BUT YOU NEED TO COUGH!! The more you think about and tell yourself to pay COUGH!! The more you think about and tell yourself to pay attention and finish reading, the worse and more severe the attention and finish reading, the worse and more severe the tickle gets in the back of your throat. You begin to fidget in tickle gets in the back of your throat. You begin to fidget in your seat and tap your pencil off of your desk. “Don’t do it, your seat and tap your pencil off of your desk. “Don’t do it, don’t cough,” you tell yourself. The more you tell yourself this don’t cough,” you tell yourself. The more you tell yourself this the worse the tickle is getting. It is getting worse….and the worse the tickle is getting. It is getting worse….and worse…and worse!!worse…and worse!!

ScenarioScenario

Did you cough?Did you cough? Imagine that you did cough and Imagine that you did cough and

everyone around you starts to laugh. everyone around you starts to laugh. The teacher sends you to the The teacher sends you to the principal’s office for coughing in principal’s office for coughing in class AGAIN.class AGAIN.

How do you feel now?How do you feel now?

Case studyCase study■ ■ I want you to imagine that you are Samantha. I want you to imagine that you are Samantha. How would you react/feel given this scenario?How would you react/feel given this scenario?

■■If you were the teacher, what could you have done If you were the teacher, what could you have done differently? What could you do to change the differently? What could you do to change the vicious cycle of bullying?vicious cycle of bullying?

■■From what you know, was the school compliant From what you know, was the school compliant with Section 504 regulations? If not, what should with Section 504 regulations? If not, what should be done?be done?

Contact informationContact information

Dana BarvinchakDana Barvinchak E-mail – dmb0901@gmail.comE-mail – dmb0901@gmail.com Telephone – 412-480-4924Telephone – 412-480-4924