FAQ For Parents/Teachers/Caregivers

This page is a collection of questions and answers commonly asked by parents, caregivers and teachers of children with Tourette Syndrome.

If you would like to pose a question which has not been answered here or feel that you could offer a much better reply to a certain question, feel free to leave a comment behind on this page.

List of Questions
Please click on any of the questions below to scroll down to the question’s answer.

Q1. What is the youngest age Tourette Syndrome has been diagnosed?
Q2. Should my child take medications for Tourette Syndrome?
Q3. Why does my child seem only to tic at home?
Q4. Is Tourette Syndrome degenerative?
Q5. Are the tics voluntary? Can it be controlled?
Q6. Is obscene language (coprolalia) a typical symptom of Tourette Syndrome?
Q7. How is Tourette Syndrome treated?
Q8. Is it important to treat Tourette Syndrome early?
Q9. Do all people with Tourette Syndrome have associated behaviors in addition to tics?
Q10. Do students with Tourette Syndrome have special educational needs?
Q11. Is Tourette Syndrome inherited?
Q12. Is there a cure?
Q13. Is there ever a remission?
Q14. What is the best educational setting for children with Tourette Syndrome?

Q1. What is the youngest age Tourette Syndrome has been diagnosed?

Usually tics start at about five, sometimes younger. Although some parents would say there was something different about the child as a baby, in general the diagnosis cannot be made at that age.

Q2. Should my child take medications for Tourette Syndrome?

The decision to start medication in children is a difficult. One of the reasons for considering medication is that the tics or behaviours are causing significant distress or disability in your child or preventing their development in some way.

Medicines can also have adverse effects at different doses. It can be a balancing act between the pros and cons of treatment versus no treatment at all.

The key to success in this area is to maintain a good dialogue with your child about which tics/behaviours are particularly distressing, to be clear in your own mind about what you hope medication might achieve and to have a good dialogue with your treating doctor about any good or bad effects of treatment.

There have been a few treatment trials of habit reversal, a form of psychological therapy, which show that it can be useful for individual troublesome tics. If available, it is worth a try.

Q3. Why does my child seem only to tic at home?

Many people with Tourette Syndrome are able to suppress their tics for a limited time. Some children suppress their tics (or let them out in private) when at school, or in a doctor’s surgery.

This can be tiring. When a child comes home from school, they may be too tired to suppress. Or they simply feel comfortable enough to express their tics.

In such circumstances, it can be helpful to video the child’s tics. This could help with diagnosis and explaining to the school  what your child is holding in.

Q4. Is Tourette Syndrome degenerative?

No. Degenerative conditions like Parkinson’s disease or Alzheimer’s disease involve brain cells dying over time. There is no evidence for this in Tourette Syndrome. In clinical terms the reverse is true. Tourette Syndrome generally improves with time. On average, tics are most severe at ages 10 to 11.

Every patient is different. It is not impossible for people with mild tics to experience worse tics, and it is certainly common for them to fluctuate in severity. But a child with mild tics is unlikely to become an adult with more severe Tourette Syndrome.

Q5. Are the tics voluntary? Can it be controlled?

The tics are involuntary, rapid, sudden movements or vocalizations that occur repeatedly in the same way. However, it is known that most people with Tourette Syndrome do have some control over their symptoms. What is not recognized is that the control, which can be exercised anywhere from seconds to hours at a time, may merely postpone more severe outbursts of symptoms. Tics are experienced as irresistible and (as with the urge to sneeze) eventually must be expressed. People with Tourette Syndrome often seek a secluded spot to release their symptoms after delaying them in school or at work. Typically, tics increase as a result of tension or stress, and decrease with relaxation or when focusing on an absorbing task.

Q6. Is obscene language (coprolalia) a typical symptom of Tourette Syndrome?

Definitely not. The fact is that cursing, uttering obscenities, and ethnic slurs are manifested by fewer than 15% of people with Tourette Syndrome. Too often, however, the media seize upon this symptom for its sensational effect. Because milder cases are being diagnosed, the incidence of coprolalia will probably decrease.

Q7. How is Tourette Syndrome treated?

The majority of people with Tourette Syndrome are not significantly disabled by their tics or behavioral symptoms, and therefore do not require medication. However, there are medications available to help control the symptoms when they interfere with functioning. The drugs include haloperidol (Haldol), clonidine (Catapres), pimozide (Orap), risperidone (Risperdal), fluphenazine (Prolixin, Permitil), and clonazepam (Klonopin). Drugs  such as methylphenidate (Ritalin) and related drugs, and dextroamphetamine (Dexedrine) that are prescribed for ADHD have been described as  increasing tics; this is controversial. Recent studies have not found a correlation with the use of these medication and an increase in tics.  For obsessive compulsive traits that interfere significantly with daily functioning, fluoxetine (Prozac), clomipramine (Anafranil), sertraline (Zoloft) and paroxetine (Paxil) may be  prescribed.

Dosages which achieve maximum control of symptoms vary for each patient and must be gauged carefully by a doctor. The medicine is administered in small doses with gradual increases to the point where there is maximum alleviation of symptoms with minimal side effects. Some of the undesirable reactions to medications are weight gain, muscular rigidity, fatigue, motor restlessness and social withdrawal, most of which can be reduced with specific medications. Some side effects such as depression and cognitive impairment can be alleviated with dosage reduction or a change of medication.

Other types of therapy may also be helpful. Psychotherapy and counseling can assist a person with Tourette Syndrome and help his/her family cope, and some behavior therapies can teach the substitution of one tic for another that is more acceptable. The use of relaxation techniques and/or biofeedback may serve to alleviate stress reactions that cause tics to increase.

Q8. Is it important to treat Tourette Syndrome early?

Yes, especially in those instances when the symptoms are viewed by some people as bizarre, disruptive and frightening. It is also important to consider therapy when the child is concerned over her/his acceptance to peers. Sometimes Tourette Syndrome symptoms provoke ridicule and rejection by peers, neighbors, teachers and even casual observers. Parents may be overwhelmed by the strangeness of their child’s behavior. The child may be threatened, excluded from activities and prevented from enjoying normal interpersonal relationships. These difficulties may become greater during adolescence — an especially trying period for young people and even more so for a person coping with a neurological problem. To avoid psychological harm, early diagnosis and treatment are crucial. Moreover, in more serious cases, it is possible to control many of the symptoms with medication.

Q9. Do all people with Tourette Syndrome have associated behaviors in addition to tics?

No, but many do have one or more additional problems which may include:

Obsessions which consist of repetitive thoughts which can become unwanted or bothersome.

Compulsions and Ritualistic Behaviors which occur when a person feels that something must be done over and over and/or in a certain way. Examples include touching an object with one hand after touching it with the other hand to “even things up” or repeatedly checking to see that the flame on the stove is turned off. Children sometimes beg their parents to repeat a sentence many times until it “sounds right.” Repetitive copying and erasing of work in school can be quite disabling.

Attention Deficit Disorder with or without Hyperactivity
(ADD or ADHD) occurs in many people with Tourette Syndrome. Children may show signs of hyperactivity before Tourette Syndrome symptoms appear. Indications of ADHD may include: difficulty with concentration; failing to finish what is started; not listening; being easily distracted; often acting before thinking; shifting constantly from one activity to another; needing a great deal of supervision; and general fidgeting. Adults too may exhibit signs of ADHD such as overly impulsive behavior and concentration difficulties and the need to move constantly. ADD without hyperactivity includes all of the above symptoms except for the high level of activity. As children with ADHD mature, the need to move is more likely to be expressed by restless, fidgety behavior. Difficulties with concentration and poor impulse control may persist.

Learning Disabilities may include reading and writing difficulties, problems with mathematics, and perceptual problems.

Difficulties with impulse control which may result, in rare instances, in overly aggressive behaviors or socially inappropriate acts. Also, defiant and angry behaviors can occur.

Sleep Disorders are fairly common among people with Tourette Syndrome. These include difficulty getting to sleep,  frequent awakenings or walking or talking in one’s sleep.

Q10. Do students with Tourette Syndrome have special educational needs?

While school children with Tourette Syndrome as a group have the same IQ range as the population at large, many have special educational needs. Data show that many may have some kind of learning problem. That condition, combined with attention deficits and the difficulty coping with frequent tics, often call for special educational assistance. The use of tape recorders, typewriters, or computers for reading and writing problems, un-timed exams (in a private room if vocal tics are a problem), and permission to leave the classroom when tics become overwhelming are often helpful. Some children need extra help such as access to tutoring in a resource room.

When difficulties in school cannot be resolved, an educational evaluation may be indicated. A resulting identification as “other health impaired” under federal law will entitle the student to an Individual Education Plan (IEP) which addresses specific educational problems in school. Such an approach can significantly reduce the learning difficulties that prevent the young person from performing at his/her potential. The child who cannot be adequately educated in a public school with special services geared to his/her individual needs may be best served by enrollment in a special school or home schooled.

Q11. Is Tourette Syndrome inherited?

Genetic studies indicate that Tourette Syndrome is inherited as a dominant gene (or genes) causing different symptoms in different family members. A person with Tourette Syndrome has about a 50% chance of passing the gene to one of his/her children with each separate pregnancy. However, that genetic predisposition may express itself as Tourette Syndrome, as a milder tic disorder or as obsessive compulsive symptoms with no tics at all. It is known that a higher than normal incidence of milder tic disorders and obsessive compulsive behaviors occur in the families of Tourette Syndrome patients.

The sex of the offspring also influences the expression of the gene. The chance that the gene-carrying child of a person with Tourette Syndrome will have symptoms is at least three to four times higher for a son than for a daughter. Yet only about 10% of the children who inherit the gene will have symptoms severe enough to ever require medical attention. In some cases Tourette Syndrome may not be inherited, and cases such as these are identified as sporadic Tourette Syndrome. The cause in these instances is unknown.

Q12. Is there a cure?

Not yet.

Q13. Is there ever a remission?

Many people experience marked improvement in their late teens or early twenties. Most people with Tourette Syndrome get better, not worse, as they mature, and those diagnosed with Tourette Syndrome have a normal life span. As many as 1/3 of patients experience remission of tic symptoms in adulthood.

Q14. What is the best educational setting for children with Tourette Syndrome?

Although students with Tourette Syndrome often function well in the regular classroom, ADHD, learning disabilities, obsessive-compulsive symptoms, and frequent tics can greatly interfere with academic performance or social adjustment. After a comprehensive assessment, students should be placed in an educational setting that meets their individual needs. Students may require tutoring, smaller or special classes, and in some cases special schools.

All students with Tourette Syndrome need a tolerant and compassionate setting that both encourages them to work to their full potential and is flexible enough to accommodate their special needs. This setting may include a private study area, exams outside the regular classroom, or even oral exams when the child’s symptoms interfere with his or her ability to write. Untimed testing reduces stress for students with Tourette Syndrome.

The Early Years: Tourette’s in Elementary School

Tourette’s typically develops during childhood, and may not be apparent in early schooling. As the condition announces its arrival, the difficulties depend on the severity of the symptoms. Mild cases of Tourette’s may lead to a few social hurdles, which not even be attributed to the condition. More severe cases, especially when coprolalia or additional disorders, such as ADHD and obsessive-compulsive disorder, are involved. Either way, the syndrome can be quick to point out the inadequacies of a school board’s special needs programs.

If your child has Tourette’s, or exhibits any additional symptoms, you should first speak with his or her teachers. It’s important to keep the line of communication open – some teachers who are not already educated on the needs of your child may be quick to label him or her as a “troublemaker”.

Another problem may arise with other parents. If your child is known in school for being in constant trouble, other parents may not want their child to be associated with that. Coprolalia can make this situation even more difficult. Again, education and  communication are key: talk with other parents when possible and explain your situation to them. A relationship with parents and their children who are in similar circumstances can be invaluable.

If affordable, private schooling is another option, but it’s important to examine this option carefully. Sometimes, n a private school, extra attention is available, so that the child can continue to learn in a more comfortable setting. In other situations, though, a private school may be populated by wealthier children or be un-equipped to handle special needs, which doesn’t eliminate the problems of public school. A private school designed for special needs may be more appropriate.

If public schooling isn’t available, home schooling may be another option. This allows your child to be educated in a more open and comfortable environment, where his or her tics aren’t socially awkward. Information on home schooling is available either through your government, or online at sites like Homeschool World. If your child is home schooled, it’s a good idea to take part in either extra-curricular classes, or to be involved with other home-schooled children. This helps further social development, and makes the transition back to public education much easier.

High school is a social mess at the best of times. Adding the symptoms of Tourette’s syndrome to the mix can make the high school experience even messier. The good news is that high school is a time for social growth, and while initially difficult, the situation does improve.

Junior high school, or the first few years of adolescence can be particularly difficult. A home-schooled individual may want to stay at home until grades 10-11, when most of the high school population is a little more mature and accepting of diversity. In most cases, the challenge is then mostly the culture shock of the transition.

Again, as with early education, the first step is to educate teachers of the situation. The major difference in high school is that the student is much more involved.