Living With Tourette Syndrome?
As a parent of a son with ADHD, Oppositional Defiance Disorder and Tourette Syndrome, I have walked through some pretty harsh wildernesses. For my son, Tourette Syndrome is the one diagnosis which frequently resulted in unwanted stares. It brought annoyed and angry adults telling him to stop a vocal tic which was the result of the diagnosis, and in general hurt his self-confidence. Many people do not understand the disorder and believe that the individual can stop the tics “if only they really wanted to”. Really? That is like asking you not to scratch an itch on your arm, what do you do when someone tell you that? You think about that itch! The more you think about not scratching that itch, the more pronounced the itch becomes! That is similar to what happens to an individual who is trying to suppress a vocal or motor tic. It takes lots of mental energy to suppress the tic leaving very little available for learning and interacting with others.
What is Tourette Syndrome?
Tourette syndrome is a complex neurobiological disorder that affects children and adults by causing motor and vocal tics. Both vocal or motor tics are involuntary and can create stress for the sufferer, as they do not always know when the tics will appear. Both motor and vocal tics can co-exist together or they may be displayed independent of each other. The type, frequency and severity of the tics will wax and wane throughout the child’s life. One type of tic may be substituted for another during the child’s life. Additionally the tics become more noticeable when the person is under stress or is upset. The onset of this disorder is usually between 2-18 years old and more likely to affect males (the ratio is 4 times greater in males than females.) Tourette’s in United States affects approximately 1 in 25,000 and affects 25% of all people with ADHD.
What does Tourette’s Look Like?
So how would you recognize someone with Tourette’s? The criterion for diagnosis (established by the American Psychiatric Association) for Tourette syndrome is:
- Age at onset is between 2 and 16 years.
- Presence of recurrent, involuntary, repetitive, rapid, purposeless motor movements affecting multiple muscle groups.
- Multiple vocals tics.
- Ability to suppress motor tics for minutes to hours.
- Variations in intensity of the symptoms over weeks or months.
- Duration of more than one year.
- Other causes have been ruled out.
What is a Vocal or Motor “Tic?”
So what is a vocal and motor tic? There are many types of tics, and the list is long for motor and vocal tics (As you can see below). I have noted the most common types tics that you might see with an asterisk. Remember not all people with Tourette’s will have all the tics listed and the severity is different for each individual (Nor does it mean that if you have a “nervous” habit similar to one of “tics” listed below that you have Tourette’s.) The following is all the motor tics that are associated with Tourette’s:
Motor tics in the face
- Eye blinking*
- Eyes rolling upward*
- Opening eyes wide
- Closing eyes while driving
- Facial grimacing*
- Sticking tongue out
- Smacking lips
- Licking lips
- Licking shoulder
- Biting of tongue or cheek
- Looking at the sun
- Grinding teeth
Head and Neck
- Hair out of eyes tic*
- Vertical neck jerking
- Touching shoulder with chin
- Throwing head back
- Shoulder shrugging
- Extension of arms at the elbow
- Bending motion of arms at the elbow
- Flailing arm out or up
- Biting nails
- Finger sign
- Flexing finger
- Piano fingers
- Picking at skin
- Popping knuckles
- Gasping for breath
- Bending at one or both knees
- Stooping down
What Can You Do to Help a Child with Tourette’s?
Now that you know how to recognize the symptoms of Tourette’s, what can you do to help these children?
- Time limits are a major source of stress. Try to eliminate things in your classroom or be flexible with them.
- Do not draw attention to their tics. Do not allow others to ridicule or tease them!
- Refrain from asking the child not to do a tic. If the tic is disruptive to the class have the child get up an move or run an “errand” giving them a break.
- Be supportive and patient!
- Give positive reinforcement so they too can gain confidence in spite of their tics. (They tend to have low self-esteem.) Many of these children have great gifts in music and are creative!
- Don’t call them lazy or stupid.
- Praise good performance. Work with their strengths.
- Allow physical movement for relief of their tics, and energy. They too, have short attention spans, low frustration levels, and can be hyperactive.
- Be aware some of their medication can make them sleepy or lethargic. Over 50% of the children with Tourette syndrome also have ADD/ADHD.