“Tourette Syndrome Educational Based-Interventions”

Alonso Ramírez Patricio

Cárdenas Macías Thelma Lizeth

Clavel Rojas Inés Alejandra

López Camacho María Teresa

Magaña Castillo María Alejandra

Oyarzabal de la Teja Natalia

Riveros Ortiz Ariana Montserrat

UIW
Introduction

A tic disorder is mainly characterized by a recurrent movement; in Tourette’s syndrome

(TS) the symptoms are indicated by motor and vocal tics before 18 years for more than a

year. These symptoms have a variety of severity and frequency; studies have confirmed that

90% of children with a certain tic disorder are indicated after a year.

Typically, TS is characterized by a great variability of symptoms, since, in addition to a

chronification of tics, there may be echolalia, echopraxia, palilalia, coprolalia, mutilations,

and impaired impulse control; also, an increased comorbidity of TS and

obsessive-compulsive disorder (OCD), mood and anxiety disorders, as well as phobias and

attention-deficit/hyperactivity disorder (ADHD) has been reported. On the other hand,

increased substance use has been confirmed in a few studies, as the sedative effect of alcohol

usually ameliorates tics. It should be noted that TS occurs mainly in males, and shows a

genetic heritability with different severity (Müller, 2007).

In relation to the age at which symptoms appear, children and adolescents are often

discriminated against, have disadvantages in their psychosocial development, and are prone

to experience academic problems; therefore, this contributes to a chronification of the

disorder on the one hand and to the development of personality disorders on the other

(Müller, 2007).

Nevertheless, the pathological mechanism is still not clear, since although the first

descriptions of TS come from the motor and vocal tics, Gilles de la Tourette was the first

person to give a description of the disorder that now bears his name through nine cases, and

he proposed the origin of the disorder as a genetic one; this occurred in 1885 when he was a

student of Charcot at Salpêtrière in Paris. Subsequently and until the 50's, the etiology of TS

was attributed to psychogenetic causes. And in the 1960's, the effects of neuroleptic drugs on

TS began to be recognized; this last approach gave a return to Gilles' point of view about the
biological mechanisms of the central nervous system. Thus, neuroanatomical and

neuroimaging studies, as well as an effective treatment with antipsychotics, now suggest that

an alteration of the dopaminergic system in the basal ganglia plays an important role in the

pathogenesis of TS (Müller, 2007).

Tics can be categorized into three areas: clonic (abrupt, brief, or jerking movements), tonic

(isometric contractions), which affects 85% of adults and 64% of children with TS, or

dystonic (abnormal movements -Ueda & Black, 2021). Although these haven’t had a specific

reason or cause their prevalence is difficult to calculate because one part belongs to

development over time and the different presentations; different types of tics were calculated

by 3.0% (transient tic disorder), 0.7% (chronic vocal tics), 1.7% (chronic motor tics) and

0.8% (tic disorder not specified) “However, given that most children with recent onset of tics

continue to have tics for over 1 year 10, this result probably underestimates the true

prevalence of TS among the general population.” (Ueda & Black, 2021; p. 4).

There have been studies that provide a new vision of the correlation between the different

brain regions and how they are connected to the TS. An MRI study of 172 children and adults

with TS showed that brain networks in children with TS were older than in adults. Then,

there were applied many studies around this disease such as electrophysiological studies,

laboratory studies, etiology in environmental factors, and genetics; all of these topics are

significantly important for this syndrome, therefore, it has provided new insights and an

increment of information around this topic.

One of the most evident manifestations of TS is tics since they are noticeable to the naked

eye, however, it is not the only alteration it produces. There is a significant comorbidity

relationship between TS and Learning disabilities (LD). In 2005, a study was developed to

identify the different variables that can influence belonging to one group or another (TS+LD

and TS-LD). The study exposed that within a sample of 5450, 22.7% suffer from learning
problems, in addition, comorbidity of 58% -3151- of the total sample of TS and ADHD was

found, of which 31% - 990- also suffer from LD. Therefore, it is important to develop

specific intervention methods that remedy the deficiencies that these characteristics could

generate (Burd, Freeman, Klug & Kerbershian, 2005).

In light of the significant position that school occupies in every pupil’s life, teachers can

and should play a paramount, multidimensional role, not only in pupils‘ academic progress

but also in their social competence because these two aspects of functioning are

interdependent. For instance, teachers can play a role in diagnosis. The accomplishment of

such a task requires the necessary knowledge, level of awareness, and consequent

understanding of the syndrome by the teachers. Teachers working in mainstream schools

probably need higher levels of support than their colleagues working in special settings

because they are less familiar with TS (Koutsoklenis & Theodoridou, 2012).

Therefore, the enhancement of teacher knowledge about the syndrome would further help

them to handle more effectively behavioral and learning difficulties associated with TS.

Moreover, teachers should play a proactive role in peer education by working on projects

aimed at the acceptance of differences, and the understanding and tolerance of challenging

behaviors of pupils with TS by their classmates. Apart from the implementation of suitable

educational strategies and special modifications in the classroom, teachers should also work

in close collaboration with the parents of children with TS. Mounting evidence suggests that

a mutually enriching relationship between school and family optimizes the educational

outcome (Koutsoklenis & Theodoridou, 2012).

Such collaboration would also relieve families of pupils with TS who experience negative

feelings and loneliness. However, teachers should not carry the weight alone. Schools should

not only provide adequate educational opportunities but also play a dynamic role at the

community level. Overall, the study of a complex phenotype such as TS reveals the necessity
of the convergence among medical, psychological, and educational sciences as well as among

the professionals who serve them, to unlock the potential of students with TS and to ensure

the best possible functioning in the academic, psychosocial and family domain (Koutsoklenis

& Theodoridou, 2012).

To create an environment in the classroom that facilitates learning for children with TS,

four main areas can be adapted. First, take into account the Social Emotional climate,

consisting of the creation of a safe and caring environment where the student does not feel

threatened or ostracized because of tics, as they impact the social and emotional life of

individuals. Teachers should work with their classmates to reduce the negative attitudes

toward the TS child. This can be done by involving the TS student in positive activities and

spreading information about TS.

Classroom activities where students can interact with the student with TS within a

supportive, structured, and supervised environment is imperative. Pairing the student with TS

with another student in the classroom on class assignments, projects, and other social

activities can provide time for goal-directed, positive exchanges for those involved

(Chaturvedi, 2011).

The second area that needs to be addressed is the Physical Arrangements, as it can

determine how effectively a student with TS functions within a classroom. Classrooms

cluttered with desks and chairs are not suitable as it limits space for the student with TS to

move around and expend energy. Similarly, the students in the seats next need to be peers

who are accepting of differences. Also, there could be a pre-identified safe area either inside

or outside the classroom that provides a private retreat for the student with TS to practice

other stress-reducing options or between activities to calm, regroup, and reduce stress and,

possibly, the occurrence of tics (Chaturvedi, 2011).

interesting to the student with TS can be scheduled later in the day, as tics decrease in

severity and occurrence when individuals are engaged in enjoyable and interesting activities.

Also, TS students can have difficulties with changes in routines, so it is recommended that

they are informed in advance, with alert strategies.

The fourth and last adaptative area is Instructions and Assessment. By observing the

behavior of the TS student, teachers may detect underlying behaviors that may interfere with

success in the classroom, such as difficulty in the beginning and completing assigned

activities; by detecting these, teachers can provide pre-determined cues to remind the student

to start or continue to work. Another example is that they may be uncomfortable when

answering questions posed to the whole class, so, to enhance the student’s comfort and thus

classroom success in oral participation, they can pre-arrange a signal for occasions when the

student is ready to respond. In handwriting, the student can record the lecture, allowing total

attention. Or teachers could provide notes about the topic to the student with TS (Chaturvedi,

2011).

Finally, it is fundamental to consider psychological treatment, since TS is considered a

mental illness; behavioral therapy is recommended by the American Academy of Neurology

practice guidelines. It consists of prevention, habits reversal therapy, or certain behavioral

interventions, also a controlled trial about long-term effects. All of these interventions

presented benefits for 74% of the population after a year of follow-up (Ueda & Black, 2021).

Another element that might be useful is group-based behavioral therapies, since their cost is

less aggressive, it allows therapists to treat multiple patients simultaneously. In addition, it is

favorable to provide a sense of belonging to the patients and procure a safe space for all to

share experiences.

Justification
 Socialization is important for every student, and for children with TS, the possibility of

studying in a general classroom is reachable and contributes significantly to their social skills.

Nevertheless, teachers are not usually well trained to develop skills and strategies in order to

create a cooperative environment in the classroom for this population, thus hindering the

learning process of the students. Building strategies that can be easily implemented by any

general teacher or educator, will improve the learning process of the child with TS, as well as

facilitate the production of empathy between the people that conforms the class -students and

educator-. The workshop will provide information and strategies to manage students with TS

with TS to both teachers who already have a student with TS in their class, as well as those

who could receive one in the future, with the intention that the participants are able to build

an environment that adapts and promotes the inclusion of these students in the learning

process.

Objectives

General: Teach general adaptive adaptive areas presented in every classroom that can be

addressed in a way that facilitates learning for students with TS.

Specific:

1. Raise awareness about TS in teachers that can be communicated and transmitted to

the students.

2. Mastery in modifications in four adaptive areas (Social-Emotional Climate, Physical

Arrangement, Schedules and Routines, and Instructions and Assessment.)

3. Spread Awareness about TS to parents, which their child or their classmates may

present TS symptoms.

4. Deliver tools to understand how to act in case of a TS crisis.

5. Create awareness of the importance of building a social network.

Participants
 The workshop is directed to elementary teachers that have an interest in developing

abilities that could be used in their classroom when they have a student with TS. The groups

will be from 5 to 10 participants. The managers for the workshop will be psychologist

specialists who have undergone a short training process in the workshop.

Initial assessment

● Goals

Identify the level of knowledge the participants possess about the symptomatology of TS,

and how to assess the tics.

● Tools:

○ Technical description

The YGTSS describes a series of items, with examples of real situations, with

which to compare the symptomatology presented by the patients to be

assessed. Given the linguistic subtlety of these descriptions, their direct use of

the English original causes difficulties for clinicians.

○ Exemplars or examples (attached in annex 1)

The exemplar that will be used in the workshop is the Yale Global Tics

Severity Scale (Scahill, 2013) which is considered one of the best instruments

to assess tics in TS patients.

In the appendix of the document is available the instrument ready for

application, it is important to mention that this instrument is not standardized

for the Spanish-speaking population, so we are going to adapt the instrument

for this population.

Relevance or pertinence

Our workshops attend TS students with LDs that have affectations on their

academic development. The object of educating teachers so they can identify

environments and create a safe, ideal one instead. The general focus is to

improve their scholarly setting and take into account their need for inclusion in

their classrooms to avoid emotional repercussions caused by the lack of social

networks.

● General structure:

○ Number of sessions and Format

Our workshops consist of twelve group sessions, two sessions divided in two

days per week (one hour per day which has twenty minutes theoretical and

thirty minutes practical). The format that will be used in the workshop consists

of twelve group sessions, each lasting one hour, divided as follows: twenty

minutes of theoretical material, thirty minutes of practical content and the last

ten minutes will be for answering questions and comments from the

participants. The course program establishes two sessions a week,

accumulating a total course duration of a month and a half. In most of the

sessions, both the theoretical and practical parts will be worked on in groups,

with the exception of the seventh session, which will be completely individual

and theoretical, as will the eighth session, in which the Yale scale will be

applied. The workshop will be developed within the academic institution and

may be implemented in a classroom, in the auditorium, or any similar space as

long as it possesses a quota of at least twelve people.

1: Introduction to Tourette Theory

2: Classroom Inclusion Theory and practice (strategies)

3: Lower TICs on stressful Theory and practices (strategies)

4: How to handle Tourette Theory and practice (strategies)

5: Creating Social Networks Theory

6: Clinical case Theory

7: YALE scale Theory (group)

8: YALE scale Practice (individual)

9: Emotional implications Theory and practice (roleplay)

10: How to create Theory and practice (roleplay)

11: Identification of needs at Practice

12: Closure Practice (focus group)

Individual sessions:
Activity Procedure Material Goal F. Hypothesis C. Hypothesis Practical
relevance

Initial Activity Participants will say Not needed To establish Empathy Interaction Establish rapport.
“Present their name, what do rapport with the between
yourself” they teach, and share participants and participants and
an interesting they can get to moderators.
experience with a know each other.
person with TS.

Introduction to Teachers will have a Powerpoint Level the Empathy and Learn the basic Improve their
Tourette 50 min theoretical Slides and knowledge within comprehension knowledge needed capacity as
class to understand audiovisual the participants to deal with TS teachers to have
the basic concepts of material students an adequate
TS. -Crash of approach to
(30 the presentation Course- students with T.S.
20 for Q&A)

Classroom Teachers will have a Powerpoint Learn to adapt the Critical thinking Help each teacher Teachers will be
Inclusion 50 min class about Slides setting as well as and solving to develop the able to plan,
the environmental Sheets of the environment processes ability to adapt a create and apply
needs required to an paper around the TS. classroom modifications on
appropriate Pencil considering the the environment
development of the issues that may to fit the student
student with TS. appear while needs.
 (20’ the presentation working with TS.
& 30’ for a clinical students
case)

Lower TIC´S on The participant will Powerpoint Instruct the Inclusion Help each teacher Provide
stressful events receive a 25 minutes slides and teachers on how to Behavior to develop the techniques that
theoretical class that material respond in case of management ability to manage may help the
will discuss the provided by a TS crisis Frustration stressful events in participants
relationship between psychologist depending on the management a classroom improve their
stress and TICs, with severity of the considering the abilities on group
severity, and their knowledge on kid's tic. issues that may management, and
possible psychological appear while performance at
repercussions. first aid working with TS. crisis
Later, the participant students. so they can be
will receive a 25 able to manage
minutes Crash course stressful and
on psychological first unexpected
aids. events.

How to Handle a The participants will Powerpoint Acquire Frustration Give the Help the
Tourette Crisis receive a 40-minute Slides knowledge management. participants not participants to
class on how to regarding a crisis Problem Solving only the theory identify what are
identify the beginning by identifying the skills. but also get them the strongest skills
of a crisis, what to do different elements into a practical and what are skills
while it's occurring within each kid situation in order they need to work
and what needs to be and knowing how to apply the skills with, in addition
checked afterward in to react. required. obtain tools that
order to know the can be useful to
student is alright. the crisis
Later the participant management, in
will perform two role order to improve
plays where they are they performance
 able to use the with the TS kid
knowledge they have into an academic
acquired. setting.

Creating Social The participants will Powerpoint Give importance Empathy Help the teachers By providing
Network receive a 30-minute Slides and place to the Communication to understand the them different
class where they will child's social bond skills importance of a tools on how to be
learn how to be a since it is often social bond empathic with
support for a child taken for granted between the child their student with
with child with TS that the social bond with child with TS student with TS,
and also involve their is already and their professors sors
parents and established environment and will acquire them
classmates in order to (however, it is not explain strategies and the ability to
give a safe place for taken care of or that may be useful apply them in
the student with TS maintained). for them. different
development. They situations
will have 20 minutes
for Q&A

Clinical Case In teams, the 3 Clinical Put into practice Abstraction of Through the use Provide
participants will descriptions of what has been the case. of the cases, a experience and
analyze different patients with learned from the Abstract reality test will be account for each
cases to create an TS. course, from how a thinking provided before participant's own
intervention model specific case is Critical and the theory is seen, style in
according to each analyzed to how it global thinking. so that the responding to
case (they will have is solved according Decision participants can each case, as each
50 minutes to analyze to the needs of the making. choose between one is different.
and create this case and the theory Team work the different Likewise, there is
intervention), then seen. Likewise, (factors that sessions, and the feedback from
they will present their give an exposition modify the options they want more participants
proposal to the class. of the practice, child's to solve the cases in the same
since it is not the development). in different ways. situation (different
 same as the theory Resolution of ways of thinking
and there could be specific are nurtured).
modifications or problems.
innovations in the
strategies.

YALE Scale The participants will YALE Scale To teach teachers Critical and Learning how to To improve and
receive a 40-minute what the YALE global thinking use the Yale scale strengthen
class on how to use scale is and the Level the and how to teachers'
the YALE scale in theory it implies, knowledge identify the knowledge about
order to provide them as well as to within the severity of tics in the severity of tics
with a tool with explain how it is participants. each case. and to develop the
which they can used and how necessary skills to
identify and measure motor and analyze the results
the TICs severity of phonemic tics of the scale, or to
the student should be encourage them to
(Theoretical measured specialize in this
material). according to field in order to
The last 20 minutes frequency, correctly apply
will be dedicated to a intensity, and evaluate the
Q&A session about complexity, and results of the
the test. interference. scale.

YALE Scale The participants will YALE Scale Make the Critical thinking Participants will Teachers will be
adaptation receive a 40-minute participants learn and capability to receive their able to find
class on how to use how to apply the analyze partners' clinical solutions and to
the YALE scale in Scale on TS kids circumstances. cases, and they are hear and learn
order to provide them so they can be going to solve from others ways
with a tool with prepared to each other's cases to overcome
which they can identify as a role play. stressful
identify and measure situations.
the TICs severity of (Almost as in
 the student (practical making a Brain
process) Storm)
The last 20 minutes
will be dedicated to a
Q&A session about
the test.

Emotional The participant will Powerpoints This activity is Empathy, The participants The work of the
Implications receive a 45 minutes Slides intended for the supporting, and will learn to teacher is not
class on what are the teaching staff to communication understand the limited to
emotions related to have a theoretical skills emotional academic
TS in a social approach that processes that a doctrine, but is
environment, later promotes student with a often the first to
they will have 15 understanding and Tourette goes observe the
minutes to discuss its empathy regarding through, in order emotional
relation in a social the emotional to generate an repercussions that
academic aspects that are empathetic students may
environment with the involved in posture from present, for which
rest of the group working with this which they can they must be able
population, In provide emotional to help them
order for teachers support to the understand,
to develop the student in case verbalize and
necessary tools and needed. process their
skills to promote a feelings.
better development
and academic
performance of
students with TS

How to Create The participant will Powerpoints The goal is not Collaboration, The participants There is a
Consciousness of have a 50 minute Slides only to inform the respect, will obtain a constant search
TS. as Parents class on how to population about commitment and constant source of for information,
 manage sensible TS, but also to broadening of information, in critical thinking is
information to create a support perspectives. addition to create favored and
parents, keeping an network among bonds with each having a group of
empathetic posture parents where they other that will people who
and providing continue to be foster a pleasant interact with
adequate information. informed about space for both respect to a
this syndrome, in parents and specific situation
addition to sharing children. makes it more
testimonies. enjoyable.

Identification of The participant will 3 Clinical Help the teachers Analysis, Participants will The teachers will
Needs In Real receive a 40-minute Descriptions to develop the organization, be able to access a be able to have a
Cases class on how to relate of Patients ability to identify critical thinking, real case that basis on how to
the signs expressed with TS., the particular need reflection, allows them to act in case a real
by the student with CardBoard, of the TS. student, communicating carry out an case comes to
their own needs, in and Markers. and how to solve ideas and in-depth analysis them, they will be
order to acknowledge those problems. thoughts. of the case, where prepared on how
the change that must they can use their to act in certain
be done. On the 20 critical thinking to situations, in
minutes left, the smooth out or addition to
participant will be eliminate any facilitating the
asked to identify the stigma they may identification of
need of the student still have. students who may
base on a situational suffer from TS.
example.

Closure The participants will Microphone This activity is The exchange of By sharing It is important that
have 15 minutes to and intended to allow knowledge information about the participants
express how they feel blackboard participants to between the their feelings, raise awareness
with the new with markers analyze their participants, experience and and reinforce the
information and progress expression of knowledge; they progress they have
strategies that they throughout the feelings, internal would be able to obtained in the
acquired. workshop. So that and external learn during the workshop to
Then the teacherwill they can identify analysis and workshop. promote that in
be tested in order to the behaviors that comparison of Participants would the future they can
measure their they previously perspectives. be able to identify put into practice
performance during maintained and, and improve their the knowledge
the workshop - 20 based on this, they performance. learned if
min can reinforce the necessary.
Closure ceremony changes that they By sharing with
and diploma delivery need to implement the group the
25 min in their daily work. individual
experience that
was obtained
throughout the
workshop, the
participants will
be able to identify
those behaviors
that were
modified in order
to be able to
reproduce them in
the future,
promoting
improvement in
their performance
Final assessment

For the final assessment, a Google Forms Questionnaire will be sent where all the

participants can express their satisfaction or dissatisfaction regarding the workshop.

Questions:

1. On a scale from 1 to 5, how helpful was the workshop for you?

2. Which skills do you improve during this workshop?

3. With the skills written above, at what level do you improve them?

4. On a scale from 1 to 5, how successful was this workshop?

5. Please give us your feedback on the workshop, we will appreciate your comments!

Google Forms link:

https://docs.google.com/forms/d/e/1FAIpQLSfI4C0c17KG4SsZ4UKuURyc41Is-_Xgor1AuO

_4ounSg2cyhg/viewform?usp=sf_link

As a way to measure the effectiveness of the workshop and the progress of the participants, a

diagnostic evaluation will be applied at the beginning of the workshop to determine the

participants' general level of knowledge about TS. At the end of the workshop, the same test

will be applied and both tests will be compared to determine whether or not the participants'

learning increased after the workshop. The questions are listed below:

1. Do you know what Tourette Syndrome is?

2. Mention the symptoms of Tourette Syndrome.

3. Do you know how to handle a Tourettes crisis? If you answer yes, write it below.

4. What are the emotional implications of having Tourette Syndrome?

5. What are the 4 adaptive areas that have to be modified for a kid with Tourette?

6. What is the percentage of children affected with TS by tics?

7. What is the percentage of adults affected with TS by tics?

Burd, L., Freeman, R., Klug, M. & Kerbershian, J. (2005). Tourette syndrome and learning

disabilities. Research Articles. BioMed Central.58: 311-317.

Chaturvedi, A. & Gartin, B. (2011). Tourette Syndrome: Classroom Implications. Barbara J.

Kulik, Sherwood, J. Best, Mari C., Blanche J., Kathryn W., Robert, S. & Gardner, T.

(Eds) Physical Disabilities Education and Related Services. (pp. 57-63). The Council

for Exceptional Children / Division for Physical, Health and Multiple Disabilities.

Koutsoklenis, A. & Theodoridou, Z. (2012). Tourette Syndrome: school-based interventions

for tics and associated conditions. International Journal of Special Education,

27(3):213-223.

Müller, N. (2007). Tourette's syndrome: clinical features, pathophysiology, and therapeutic

approaches. Dialogues in Clinical Neuroscience, 9(2): 161-171.

Scahill, D. (2013). Yale Global Tic Severity Scale.

Ueda, K. & Black, K. (2021). Recent progress on Tourette syndrome. Faculty reviews, 10, 70.

Annex 1.