This resource provides a brief discussion of the most common comorbid and co-occurring disorders and learning disabilities. Some include links for more in-depth resources. Additionally, the Educator’s Guide for Developing Plans for Students with Tourette lists possible strategies for many of the common challenges discussed below.
Tourette Syndrome (TS) is a complex neurological disorder that often includes comorbid or co-occurring diagnoses. While tics are often of major concern, it is not unusual for disorders and learning disabilities to significantly impact and increase symptoms of other commonly related disorders. An example of this is an obsessive-compulsive need for perfection impacting written language deficits.
Students with Tourette often have difficulty consistently inhibiting thoughts, feelings and/or actions. Disinhibition is the inconsistent ability to use learned inhibitory skills. Students may struggle with inhibiting behaviors, thoughts, emotions, and verbalizations which they know are inappropriate. Behaviors may appear to be excessively silly, sassy, rude, disrespectful, free-associative comments, emotional outbursts, contextual cursing, blurting out, inappropriate comments, explosive anger, and oppositional defiance. Reducing anxiety, developing proactive/positive supports typically reduce symptoms and disinhibition.
DIFFICULTY WITH WRITTEN LANGUAGE
Getting thoughts from the brain to the paper is a very common challenge for people with TS. The challenges can include sloppiness, frequent erasing, time-consuming efforts for neatness, difficulty with spacing, punctuation, capitalization, reduced output, labored writing and refusal to write. Some students, due to obsessive-compulsive behaviors, become ‘stuck’ on writing perfectly, and it may take them an inordinate amount of time to accomplish a task, leaving them frustrated, exhausted, and unsatisfied with the results.
It may be assumed that the child is refusing to write because he/she doesn’t like to do it. The reverse is very likely true. The child refuses to write because she/he can’t. Dr. Ross Greene states, ‘A child will perform if they can and if they can’t, it is up to the adults to provide what is necessary so that they can.’
Often very young students perform well when learning to write. As writing becomes more complicated and lengthier, writing may become more difficult, messy, 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 students is sometimes helpful. However, typically extra practice or rewriting typically won’t result in better penmanship. Instead, teaching the child keyboard skills, use of a tablet, and or the use of voice to text programs may be a better use of time and energy. Note that handwriting may be impacted by the inconsistent nature of Tourette, waxing, and waning of symptoms and affected by stress and other environmental factors. Short assignments may be written neatly, but longer assignments may result in a breakdown of writing and readability. When evaluating writing skills, the assessment should be evaluated when tics are typically more interfering and should be a lengthy writing sample on a topic which is not a favored one by the student.
Many students with TS have a secondary diagnosis of Oppositional Defiant Disorder (ODD). Many professionals believe oppositional behavior needs to be viewed as a symptom or means of communicating and not as a disorder. It is frequently a response to an underlying challenge, such as OCD, ADHD, tics, processing difficulties, written language deficits, executive function deficits, sensory issues, and skill deficits which prevent the child from expressing his needs or responding appropriately. For example, a student who becomes oppositional during a task requiring writing may be communicating that he/she struggles with written language skills. If a student displays defiant behavior in a particular setting, this may indicate that she/he is overwhelmed in some manner in that setting. Dr. Ross Greene’s website, and books “The Explosive Child” and “Lost at School” are excellent resources. This website is specific to oppositional defiant challenges.
‘RAGE’ OR EXPLOSIVE OUTBURSTS
A small percentage of children with TS have outbursts of uncontrollable anger often referred to as “rage” or explosive behaviors. The child might yell, throw things, call people names, all in a manner that appears to be a response that is inappropriate to the situation. Sometimes a change in routine or expectation of an event for a child who is inflexible may set off an episode. This symptom is neither the fault of the child nor the family members. It often merits further exploration by school teams, teachers, and families in order to develop helpful strategies. In fact, experience shows that typical interventions (including negative consequences and rewards) often will increase these rage episodes. It is critically important that adults in the life of a child with TS attempt to be flexible, remain calm, endeavor to recognize what impacts the child’s explosive responses. Equally as important, are efforts toward recognizing prior to the occurrence that may reduce the likelihood of it occurring. Typically, these challenges occur more frequently at home than in the school setting but this is not always the case. Dr. Cathy Budman is an internationally acclaimed doctor regarding Tourette and explosive outbursts and provides valuable information in the following resource: Explosive Outbursts and Tourette
ANXIETY AND FEAR OF RISK TAKING
The child may have anxiety issues surrounding specific tasks or situations but may be embarrassed or unable to articulate the reasons for his anxiety. Refusing to attempt tasks may actually be the only means of communicating an underlying anxiety that’s preventing the child from being successful.
Strategies to help reduce anxiety need to be individualized, specific and supported by everyone. Consistency is critical because this creates a sense of security. If a plan is in writing and everyone involved signs that they are in agreement, this may assist in reducing the student’s anxiety. Some strategies are relatively simple while others may need to be more complex. For example, a student with anxiety may be allowed to implement specific sensory strategies which have been demonstrated to reduce that individual student’s anxiety. When possible, assisting in developing a life-long strategy of recognizing when anxiety is increasing and what reduces feelings of anxiety may be supported in school.
“Anxiety is always the enemy of intelligence. The minute anxiety arises, intelligence closes to search for anything that relieves the anxiety.” Joseph Chilton Pearce.
‘FIGHT OR FLIGHT’
In general, students with TS have a heightened response to their environment. When a situation arises that increases a student’s anxiety, adrenalin may rise resulting in a fight or flight response. Developing a plan which assists in recognizing when anxiety is increasing and an acceptable plan to decrease anxiety can be important. As an example, a 9th-grade student frequently became easily overwhelmed and responded by leaving the school property. A plan was devised which allowed him to sit next to the door in classes where this occurred more frequently. He worked on recognizing when anxiety was beginning to increase and was permitted to slip out to get a drink of water and return after 3 or 4 minutes without disrupting the class environment. Helene Walisever, Ph.D., Clinical Psychologist and members of Tourette Education Advisory Board provides this resource regarding managing anxiety in school.
DIFFICULTIES WITH TRANSITIONS
Often individuals with Tourette have problems with transitions. This is particularly true of those who are internally driven to complete the current task. For the student with Tourette and obsessive-compulsive behaviors, transition difficulties can be exacerbated. Transition strategies can be written into the IEP for teachers to support. If a strategy hasn’t yet been established or is not being successful, experimenting with different ways of preparing the student for approaching transitions can be helpful.
USE OF INAPPROPRIATE LANGUAGE and COPROLALIA
Coprolalia is a symptom of Tourette characterized by unwelcome, unwanted and uncontrollable utterances of words or phrases that are not appropriate.
It is not true that a person must have coprolalia in order to have a diagnosis of Tourette. In fact, only a small minority have this symptom. Ironically, while this is the most recognizable symptom, it is also the symptom that is most misunderstood and the symptom for which students are most often removed from class, receive detention or suspension, and are moved to a more restrictive environment.
Coprolalia is any socially inappropriate sound, word, phrase, or group of words. Common examples are swear words, sexual statements or sounds, and other vocalizations which may be either contextual or out-of-context. A limitless variety of sounds, simple phrases, or words can also be coprolalia.
AUDITORY AND VISUAL DIFFICULTIES PROCESSING INFORMATION
Some students with TS have difficulty processing information presented to them either verbally or visually. They may require more time to answer a question or respond to a directive due to finishing a tic, an obsessive thought, or other challenges. Some students have learned to compensate for the awkward and embarrassing silence by saying something, such as “this is dumb”; “I don’t care about your stupid question”; “Shut up”, “I don’t have to do this. Effective support would be working with the student to develop a different response when he requires more time to process. A positive strategy for a teacher might be to ask the question, then tell the student that you’ll come back to him in a minute for the answer. This is helpful for many students and by using this strategy with others, it reduces the appearance of the student with TS as being ‘different’. Most importantly, the reason for the delay in processing information may be due to a variety of symptoms and neurological difficulties rather than deliberate misbehavior.
SENSORY INTEGRATION ISSUES
Increased sensory needs and/or ‘tactile defensiveness’ may be seen in children diagnosed with Tourette. Some students may respond negatively to light, sound, touch, taste, or smell and are easily overwhelmed by their environment. A need for additional external stimulation may require additional sensory input (chewing, hitting, or hurting self). Involving an Occupational Therapist qualified in sensory integration issues is essential. Developing a “sensory diet” can often be beneficial for a student with TS. A TAA webinar provided by Heather N. Simpson, OTD, MOT, OTR/L is an excellent resource.
Attention Difficulties are extremely common for students with TS due to a variety of disorders and symptoms. Common reasons are tics, obsessive-compulsive thoughts, ADD as well as the energy and focus required to suppress symptoms. However, some students are able to pay attention during tics, even though it appears otherwise. It is important to consult with an occupational therapist for suggestions and strategies that may be helpful for the individual student.
If a student has difficulty reading, eye blinking, and other motor tics must be considered. However, reading difficulties can be complex and require investigating a student’s co-occurring difficulties. For example, a 4th-grade student loved to read at home but refused to read in school or to read anything assigned by the school. An outside consultant familiar with TS was able to ascertain that the child had significant written language deficits combined with a need for perfection. The student knew if she read school-assigned books, there was a good possibility that she would be required to write about it, which was difficult because of her written language deficits. The combination of messy writing combined with a fear of giving a wrong answer resulted in a refusal toward schoolwork.
EXECUTIVE DYSFUNCTION DISORDER
Executive function is a set of mental processes that helps connect past experience with present action. People use it to perform activities such as planning, organizing, strategizing, paying attention to and remembering details, as well as managing time and space. Many students with Tourette are intellectually capable but struggle due to executive function deficits. A person with executive deficits may have extraordinary talents and abilities, but not possess the organizational capabilities necessary to demonstrate these abilities in a useful and productive manner.
These students are frequently viewed as being lazy or oppositional. In reality, they require individualized supports often provided by a consultant teacher to develop individualized and life-long strategies. Improved executive function skills enable students to prioritize tasks, complete assignments, and manage time in a manner more accurately reflecting their true abilities. A brief video by Abigail Levrinin, Ph.D. provides additional information.
SOCIAL SKILLS DEFICITS
Students with Tourette may have social skills difficulties, both in the classroom and outside, social environments. These students are sometimes viewed as having bad behaviors that they do not know how to correct or manage ‘in the moment’. They may struggle with making and keeping friends and have difficulty following the social “rules” in order to participate appropriately in the classroom and school settings. Oftentimes, these students are viewed as having an Autism Spectrum Disorder (ASD). However, since Asperger Disorder, originally included in ASD, has been replaced by Social Communication Disorder (SCD) in the DSM5, students with Tourette may have SCD as a related disorder. The correct diagnosis is critical, since social skills therapy approaches designed for students with ASD often are not effective for students with Tourette/SCD and may actually be harmful to the student.
Since students with Tourette have complicated co-occurring disorders, such as anxiety, OCD, and ADHD, which may have a major impact on social communication and require a different approach to intervention. For example, if anxiety is the primary issue that is interfering with social skills, then using social stories and scripts will not address the underlying problem. Additionally, it is often necessary for a speech therapist to teach pragmatic language skills. In many instances, bright students do not intrinsically recognize pragmatics and/or acquire social skills naturally. When motivated to have friends, they can often learn the necessary skills to be successful. The following videos by Pam Malley, MA, CCC-SLP, Speech-Language Pathologist provide additional information regarding social communication issues:
Social Functioning (5 min.)
Doing well on any given day is not always to the advantage of a student with disabilities because adults then expect the student to perform consistently at that level. The only thing that is consistent about Tourette syndrome is the inconsistency. As an example, a young student who is evaluated as superior abilities typically does well academically. Occasionally, the student doesn’t complete a task or performs poorly and thus adults may believe that the student is being manipulative or lazy. Encouraging the child, by reminding him/her to try harder and that he/she did this exact task yesterday may also be attempted. These may help occasionally, however, it may only increase the child’s stress. This will, in turn, increase tics and other symptoms. Do we expect baseball players to hit a home run every time they are at bat just because he/she does occasionally? The very nature of Tourette is fluctuating symptoms and the ability to perform consistently.
BEHAVIORS THAT ARE DIFFERENT AT HOME AND SCHOOL
Being in school all day, attempting to ‘manage symptoms’ while learning and performing despite a variety of symptoms can be exhausting and frustrating. Some children with Tourette need to unload when arriving home. This can result in an eruption of symptoms and for some, explosive behaviors. It’s important that all school personnel recognize that the demands of the school day can result in this type of behavior at home even if a student appears to be happy, has few obvious tics/symptoms, and does well at school. Unloading can threaten quality family time and impact homework completion. It may be necessary to reduce the number of math problems, shorten written assignments, provide notes, allow the use of electronics, and significantly modify or eliminate homework when possible.
NEED FOR A SENSE OF CONTROL
Inconsistencies in a child’s abilities to perform tasks can be confusing for the child and adults involved. Students are frustrated over their ability to control some parts of their lives but not others. When educators provide opportunities for students to experience control, often they will not need to take control in an inappropriate manner. Assisting a student develop strategies that result in experiencing some control of his/her environment may be extremely helpful in the short term as well as for the future.
Providing opportunities of control by asking a student what is needed and working together to develop a proactive and positive plan may establish an atmosphere of teamwork between the student and the educators. A ‘contract’ outlining expectations and demands from the student is neither positive, proactive, or provides a sense of control for the student. Contracts often require specific behaviors that may not be possible for the student and thus highlighting the lack of control the student has over her/his neurological symptoms and life.
It is quite common for students with TS to have an 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 knowing how to support a student’s strengths is critical to the success of the child both academically and socially.
TRIAL AND ERROR
Working with the unique problems and variety of disabilities that students with Tourette deal with on a daily basis often requires trial and error. Many times, a support will be successful for a period of time but then will need to be altered as situations, tasks, and people change. Maintaining a file describing strategies that have been successful as well as those which are unsuccessful can be a valuable aid for current and future teachers.
The Tourette Association encourages educators to use the variety of resources on the website as well as opportunities to speak directly with the Education Specialists.