Challenges Related to Tourette Syndrome

Tourette Syndrome (TS) and its related disorders can manifest as behaviours that often appear to be purposefully disruptive, attention seeking or manipulative. Therefore, it is not unusual to misinterpret these neurological symptoms of the disorder as behavioural problems. Tourette syndrome is commonly misunderstood to be a behavioural or emotional condition, rather than a neurological condition.

Learners with TS may be punished for symptoms and behaviours that educators assume are disruptive and purposeful. Even an empathetic teacher, who recognizes the learner as an individual who has abilities may be frustrated because of the difficulties in understanding the cause of the behaviour.

If instead the educational team recognizes that the learner is struggling due to an underlying problem, they will be more likely to provide unique and creative strategies for that learner. When educators consider what they can do for the individual and not what they can do to the individual, strategies are more positive, proactive and effective.

Tourette Syndrome: Behavioural Challenges

Disinhibition

The individual cannot consistently stop himself from expressing thoughts or displaying actions that most learners have the ability to control.
Examples of disinhibition might include excessive silliness, sassiness, uncensored and/or inappropriate comments, emotional outbursts, contextual swearing, explosive anger, or oppositional defiance.
In these instances, it is best to use ‘planned ignoring’ when possible, as well as to provide counselling support to help her understand why she has trouble applying the ‘mental brakes’.
Then, teach her strategies that allow a more appropriate response.
Since her actions are due to a neurological disorder and are not purposeful, this may require extensive practice and patience.

Oppositional Behaviours

Approximately 26% of individuals with TS also have behavioural challenges such as Oppositional Defiant Disorder (ODD) or Conduct Disorder (CD).
Underlying difficulties that may contribute to the oppositional behaviours, such as OCD, ADHD, tics, processing difficulties, written language deficits, and sensory issues.
These related difficulties may prevent the individual from expressing his or her needs or responding appropriately. For example, a learner who becomes oppositional only during a task requiring writing may be communicating through his behaviour that he is struggling with writing.
If a learner displays defiant behaviour in a particular setting, this may indicate that he or she is somehow overwhelmed in this setting.

Immaturity

Individuals with TS frequently exhibit behaviour that might be immature for their age, even though they may have more advanced academic abilities.
Adults may perceive the age-inappropriate behaviour as being purposeful. However, these behaviours should be understood in the context of the disability.

Obsessive Compulsive Disorder And Behaviours

OCD is a common co-occurring condition for people with TS.
Obsessive Compulsive Disorder (OCD) is characterized by recurrent, unwanted thoughts and images (obsessions), and/or repetitive behaviours (compulsions), which the person hopes will prevent the obsessive thoughts or make them stop.
Performing the compulsions provides only temporary relief and not performing them significantly increases anxiety.
Learners may experience a wide array of difficulties due to OCD including, but not limited to, rigid thinking, perfection, difficulty with transitions, poor social skills, inability to respond in an appropriate manner, and beginning and/or completing work.
They are often internally driven to complete the current task or stay in the current environment and not move on.
Some individuals with TS may not meet the full criteria for an OCD diagnosis, but may still experience obsessive compulsive behaviours, that may be misunderstood.
Unrecognized symptoms of OCD can often result in punishment.
However, being punished can increase learners’ anxiety, inhibit academic performance, and lead to behaviours, which are then interpreted as oppositional defiant, disrespectful, and/or lazy.
Providing appropriate educational supports is significantly complicated for learners with TS and OCD because it is often difficult to tell the difference between complex tics and obsessive-compulsive behaviours.

Rage And Outbursts

A small number of individuals with TS have outbursts of uncontrollable anger, often referred to in the TS community as “rage”.
Generally, this is displayed in the home setting more frequently than at school. The individual may yell, throw things, name-call, all in a manner that seems out of the ordinary.
This characteristic is neither the fault of the individual nor the parents.
In many instances, professionals, and even friends and family members, tend to attribute these outbursts to the parenting skills or the situation at home. Even more, many parents tend to blame themselves.
The causes for these outbursts may not be obvious but may be due to the neurological disorder.
Teachers and families should examine why the outbursts happened and explore what led up to them.
Sometimes a change in routine or expectation of an event for a individual may bring on these outbursts in a individual who has difficulty with change.
Inappropriate forms of intervention (including negative consequences) may also trigger or increase these rage episodes.
It is critically important that adults in the individual’s life become aware of the factors that either intensify or lessen the explosive behaviours (Behaviour analysis=NB).
This can escalate into a ‘flight or fight’ reaction. If this should happen, it is important that the learner be placed with teachers who can remain calm in these situations and provide necessary supports.

Difficulties With Transitions

For the learner with TS and additional anxiety, transition difficulties can be exacerbated.
Transition strategies can be written into the IEP for teachers to follow.
If a strategy has not been established, the current teacher may need to experiment with different ways of preparing the learner for approaching transitions.

Use Of Inappropriate Language (Coprolalia)

Coprolalia is a symptom of TS characterized by unwelcome, unwanted and uncontrollable utterances of words or phrases that are inappropriate.
Commonly, people come to know coprolalia as the “swearing tic”.
Many people believe that a person must have coprolalia in order to have a diagnosis of Tourette Syndrome.
Only a minority of individuals with TS have this symptom.
A common misunderstanding is that in order for ‘inappropriate words or sounds’ to be a symptom of TS, they must be said ‘out of the blue’ and must be repetitive in nature. This leads to the mistaken belief that if a learner swears once and/or at an “appropriate” time, then it is not due to TS and therefore deserves punishment.
However, it is important to keep in mind that TS symptoms, including coprolalia, are different for every individual, inconsistent, change periodically, wax and wane and are increased by stress.
The inconsistency of an individual with TS to inhibit the use of inappropriate behaviours and statements adds to the difficulty of understanding the symptoms of this disorder.

Refusing Supports And Accommodations

A learner may refuse supports and accommodations because he or she does not want to be singled out as being different.

Other Common Difficulties For Learners With TS

Auditory And Visual Difficulties In Processing Information

Frequently, learners with TS have difficulty processing information presented to them either verbally or visually.
In addition, individuals who are affected by neurologic rage need trusted adults who can provide care with flexibility and calmness.

Extreme Reactions To The Environment

In general, learners with TS have a heightened response to their environment that may cause them to become overwhelmed.
Guidance, support, and patience by parents and educators may help the individual overcome his or her resistance for support.
A positive and proactive plan should include discussions with the learner emphasizing that “fair is not always equal, and equal is not always fair.”
If an individual requires different supports, it’s not “bad” or “weird”, but simply “fair” for his or her situation.

Behaviours That Are Different At Home And School

Learners with TS generally do not have all the related issues discussed in this article. However, it is important for people to recognize that for the majority of learners with TS, TS is more than tics.
Managing the many and varied symptoms and difficulties, while attempting to complete school-work and have positive social interactions, can be exhausting and frustrating for the learner.
It is important that all school personnel be aware that regardless of how the learners appear in school, the demands of the school day can result in a significant and distressing increase in symptoms when they arrive home.
Adding to this is the stress of them needing to complete homework.
It is often necessary, when possible, for the family to have an outside counsellor involved. This professional can be instrumental in the process of developing supports and accommodations in the school setting, which may assist in alleviating difficulties at home.
Consider a learner with TS whose symptoms include rage manifested in the home, being expected to complete the same quantity of homework as other learners in the class.
In some cases, the desired outcome of completed homework must be weighed carefully against the individual’s welfare and best interest.
Is it possible to modify the workload in a manner that considers the impact of tics and numerous related disorders?
It is sometimes critical to provide or designate a staff person who is capable of assisting with or managing the learner’s workload so that education is not compromised, while anxiety, stress and symptoms are reduced.
They may require more time to answer a question or respond to instruction.
Some have learned to fill in the awkward silence by saying something. What they say can be negative, such as “this is dumb”; “I don’t care about your stupid question”; “Shut up”; or “I don’t have to do this.”
One example of an effective support would be assisting the learner to develop a different response when he or she requires more time to process.
A positive strategy for a teacher might be to ask the question, then tell the learner that you’ll come back to him in a minute for the answer.
Any kind of stress reduction is helpful. Most importantly, teachers should understand that the reason for the delay in processing information is due to the individual’s neurological difficulties, and not deliberate misbehaviour.

Sensory Integration Issues

Difficulties processing sensory input is common in individuals diagnosed with TS.
A learner may become easily over-stimulated by minimal sensory input such as noise, bright lights, certain fabrics, particular tastes or smells, etc.
Additionally, a learner may exhibit a need for excessive sensory input, resulting in chewing, hitting, or hurting him or herself in some manner.
Involving an occupational therapist, who is qualified in sensory integration issues, is essential.
Developing a sensory plan, often referred to as a “sensory diet”, can sometimes be beneficial for the individual and everyone who works with him or her.

Attentional Difficulties

Some learners have trouble focusing for various reasons. For example, symptoms of ADHD, complex tics or obsessions can interfere with a learner’s ability to pay attention.
The learner may be focusing on suppressing her tics and is not able to attend to classroom activity.
Other learners may indeed be paying attention, even though it appears otherwise. For instance, many learners with TS will doodle to help them concentrate on a lecture.
Educators may periodically ask questions to determine the level of attention.
Some learners with TS are capable of paying attention even while experiencing a bout of complex tics, or while apparently directing their attention to doodling or other activities.

Reading Difficulties

If a learner is struggling with reading, there may be an underlying issue and many possible reasons should be considered.
Any form of dyslexia needs to be considered and potentially ruled out.
Even mild tics, such as eye blinking, can make reading difficult. Additionally, some learners with TS and OCD have an obsession that compels them to count every word in a sentence and every sentence in the paragraph.
This makes reading not only very arduous, but next to impossible.
Professional help may be needed to discover the specific causes for the reading problem, and then to choose appropriate supports.
Sometimes, what might seem as a reading difficulty may actually be related to another underlying issue. For example, a learner was given a reading comprehension test and performed poorly.
It may seem that the learner was struggling to read or comprehend the content. However, after further assessments were performed, it was determined that her reading comprehension was at the appropriate level, but she struggled with written language.

Difficulties With Handwriting

The majority of learners with TS, especially those who also have ADHD, have written language deficits, causing difficulty in getting their thoughts into writing consistently, for a wide variety of reasons.
Difficulties with writing, or dysgraphia, can include: sloppiness; frequent erasing; time-consuming efforts towards perfectionism; reduced output; slow writing; refusal to write; and writing is poorly spaced or is difficult to read.
Handwriting can become laborious, and a struggle for the individual.
The causes for written language deficits may include: hand, finger, wrist, arm, neck, shoulder, head and eye tics or hand cramping; lack of coordination or fine motor skills; an unexplained disconnection between ideas and the ability to express these ideas in writing.
Some learners, due to obsessive-compulsive behaviours, become ‘stuck’ on writing perfectly, and it can take them an inordinate time to accomplish a task, leaving them frustrated, exhausted and unsatisfied with the results.
Parents and teachers frequently assume that the individual is refusing to write because he or she does not like to do it. The reverse is very likely true. The individual refuses to write because he or she is experiencing the symptoms described above.
Writing can become extremely difficult and sometimes even painful.
The resulting failure and subsequent refusal to write, are all part of the complex and confusing symptoms of TS.
Occupational therapy support for very young learners is sometimes helpful. However, in most cases, practice, or specialized pens/pencils will not have a positive outcome.
Extra practice or rewriting typically will not result in better penmanship.
Teaching the individual keyboard skills is generally a better use of time and energy.
It is important to understand that a learner’s handwriting can be fine sometimes and messy at other times.
Short assignments may be written neatly, but longer assignments may result in disintegration of writing and readability.
Remember that all aspects of TS are inconsistent; symptoms wax and wane and are affected by stress and other environmental factors.
OTs should evaluate a learner at a time when tics are more interfering and obtain a lengthy writing sample.
Learners with TS are often excellent auditory learners.
For many, the concentration required to take notes can actually interfere with their learning.
For this reason, providing pre-made notes for them to study can be beneficial.
A trial period to see if a specific support strategy improves grades, attitude, and performance is highly recommended.
A learner’s frustration and embarrassment over sloppy, immature handwriting can often lead to more than academic difficulties, such as bullying.
Support in this area can be critical to the overall success of the individual.

Executive Function Deficits

Executive function involves the skills necessary to succeed in school and in life; these may include time management and problem solving.
A learner with executive function deficits can have extraordinary talents and abilities, but not possess the organizational capacities necessary to demonstrate these abilities in a useful and productive manner.
Many individuals with TS are chronically disorganized.
They may have difficulty developing strategies and technique to overcome problems, as well as implementing those suggested to them.
Despite their advanced abilities, they may not have the necessary skills to consistently demonstrate their full capabilities.
These learners may require support from a consultant teacher to help manage their workflow and learn strategies to help them succeed academically.

Social Skills Deficits

Many learners with TS score above average on IQ tests, but may not act in a socially appropriate manner.
Social deficits can cause an inability to understand acceptable social behaviours.
For example, many learners with TS talk continuously and/or have a tendency to interpret things in a very literal fashion.
This can create significant social difficulties. Speech therapists can teach pragmatic language skills.
While some learners with TS struggle with social skills that may come more easily to other learners, they are often motivated to learn these skills necessary to be successful. T
It is important to include social skills training in an IEP.
Simply writing a goal stating that the individual will act age appropriately is not sufficient for learners to learn the techniques and skills that may be lacking. It needs to be taught explicitly.

Inconsistent Performance

It is important to remember that the only thing that is consistent about Tourette Syndrome is the inconsistency of symptoms and related issues.
Learners may perform well one day and then perform poorly the next day.
Often teachers assume this is done intentionally.
The level of performance can change depending on the class or the time of day.
This characteristic of TS adds to the difficulty of understanding this complex disorder.

Anxiety And Fear Of Risk Taking

Is the individual reluctant to take risks? He or she may have anxiety surrounding specific tasks or situations.
The individual may be unable to articulate the reasons for his or her anxiety, or may be embarrassed to do so.
Refusing to attempt tasks may indicate that some underlying anxiety is preventing the individual from being successful.
Strategies to help reduce anxiety need to be very specific and supported by everyone.
Consistency is critical because this creates a sense of security.
If a plan is in writing and everyone involved is on board, then the individual will feel less anxious and more confident.
Some strategies are relatively simple, e.g., being allowed to sit near the door with permission to leave when necessary.
Frequently this reduces anxiety to the extent that the learner will no longer need to leave the classroom.

The Role Of Educators

Educators should carefully examine a situation that is creating difficulty for the learner and consider clues that may suggest an explanation.
Often learners with TS do not understand what triggers their behaviours.
Typically, the best course of action is to:
- Ignore symptoms.
- Be alert to possible triggers.
- Provide accommodations and modifications.
- Acknowledge the learner, separate from the symptoms.
Work with the learner to develop and practice appropriate accommodations and supports.
Recognizing, teaching and supporting the learner with alternative strategies to manage inappropriate symptoms, instead of relying on punishments and negative consequences, are more likely to prove most effective.
Remember to consider your reasoning for the behaviour before you respond.
Asking a learner what can be done to help him or her be successful, instead of asking why he or she is not successful often aids teachers in developing appropriate supports.
This can also help establish an atmosphere of teamwork between the learner and the educators; the learner can take ownership of a positive and proactive intervention plan.

Accentuating Strengths

It may be helpful to ask the learner about his or her interests and talents.
Many learners with TS have a great interest and/or talent in art, music, science, sports, creative writing, crafts or other hands-on activities.
The importance of encouraging areas of talent cannot be overemphasized.
Recognizing and supporting a learner’s strengths may be critical to his or her success.
This does not mean that the preferred activity should be taken away as a punishment according to a behaviour plan.
One disenchanted learner said, “Don’t ever let them know what you like because they will either take it away or make you earn it.” However, depending on the learner, being rewarded with extra time for a favored activity can sometimes work effectively as an incentive.

Selecting Teachers Appropriately

Many learners require a teacher, who is adept at creating a structured environment that also allows for flexibility and choice.
This can reduce the learners’ stress and therefore lessen his or her symptoms.
By providing options, the learner may be less likely to behave in an inappropriate fashion – this is particularly true for learners who tend to be inflexible or oppositional.
Some things to consider:
- A learner who has difficulties with transitions may benefit from a teacher who provides a great deal of structure with consistent signals for transitioning. This may result in the learner experiencing less anxiety related to unexpected changes and less opposition to transitions.
- A learner who demonstrates difficulty being flexible will benefit from a teacher, who is willing to explore alternative and creative strategies.
- The best environment for learning will allow for the learner to make mistakes.
- Having at least one teacher that the learner can trust can be essential.

Trial And Error

Working with the unique challenges of learners with TS often becomes a matter of trial and error.
Many times a support will work for a while and then will need to be altered as situations, tasks, and people change.
Maintaining a file describing strategies that have been successful or unsuccessful can be a valuable aid in this process.

Helping The Learner With TS Succeed

Learners with TS are more likely to find success with a proactive and positive behaviour plan.
When teachers and learners share in the positive feelings of success, confidence develops for both teacher and learner, encouraging still more positive and proactive strategies.

The following resources will also be helpful:

Resources for the Classroom

Remember, a child with TS is a person first…who happens to have TS. As an education professional, it is important to remain curious regarding how to teach and be supportive of a student with this complex neurodevelopmental disorder. While every student is unique, the following are general suggestions that may help a student who has TS or tics, to attain academic and social success.

Recognize that tics are involuntary movements and sounds that wax and wane and can change unpredictably. In many cases, students with TS will attempt to suppress their tics to avoid negative attention from others. While the tics may appear to be within the students’ control and are being done purposefully, they are not.
Reduce Stress/Anxiety. Stress typically increases symptoms. Therefore, noting what factors increase stress and implementing appropriate accommodations or special education services will frequently reduce symptoms.
Identify the skills deficits that may contribute to increased stress/symptoms, as well as the strategies and supports to address the skills deficits.
Ignore the symptoms that can be ignored. This demonstrates acceptance and normalizes Tourette Syndrome and other related symptoms. Modeling acceptance can reduce both bullying and stress and may help the student with TS to focus his/her energy on academics rather than tic suppression.
Consider whether accommodations are needed for handwriting issues. Handwriting issues are among the most common difficulties for children with TS. Accommodations can include the use of a computer, tablet, a scribe, or having notes provided.
Be aware of co-occurring conditions, such as Obsessive Compulsive Disorder (OCD) or Attention Deficit/Hyperactivity Disorder (ADHD), which are very common for students with TS.
The characteristics of these conditions are often more problematic and harder to manage than the tics themselves.
Be creative with interventions. Teaching life-long strategies and providing supports, accommodations, and modifications are typically more effective than relying on consequences.
Involve the student with TS in developing plans and strategies for managing symptoms that can be difficult or impossible to ignore.
Promote communication with parents or caregivers. Be sure to share the student’s achievements and strengths, not just the weaknesses.
Use the Association’s resources for assistance in developing supports and strategies.

To assist educators, The Tourette Association offers a variety of programs and materials designed to help with recognition and management of TS symptoms (tics) in the classroom and school environment.