TICS AND TOURETTE'S SYNDROME: OVERVIEW

ABOUT TICS

A tic is a brief, repetitive, purposeless, nonrhythmic, involuntary movement or sound. Tics that produce movement are called "motor tics," while tics that produce sound are called "vocal tics" or "phonic tics." Motor tics seems to be more common than vocal tics.

Tics are often characterized by whether they are "simple" or "complex." A simple tic involves one muscle group or one simple sound. Many simple motor tics are associated with the face/head/neck region, such as eye blinking, head jerking, shoulder shrugging, mouth grimacing, etc. Simple vocal tics include throat-clearing sounds, grunting, sniffing, and coughing. Simple motor tics of the face and head/neck region are the most common first tics in children.

A complex tic involves a coordinated movement produced by a number of muscle groups (complex motor tic) or a linguistically meaningful utterance or phrase (complex vocal tic). As examples, complex motor tics can involve touching objects or other people, jumping up and down, spinning around, or even more complex motor sequences such as imitating someone else's actions (echopraxia) or exhibiting inappropriate or taboo gestures or behaviors (copropraxia). Complex vocal tics may involve having to repeat one phrase over and over, whether it is something one heard (echolalia) or one's own last words (palilalia).

Table 1 lists some of the common tics. Tics tend to occur in bursts or "bouts."

TICS AND TOURETTE'S SYNDROME ARE COMMON CHILDHOOD CONDITIONS

A significant percentage of all children will experience one, or even a few, tics at some point in their development. For most children, a tic will emerge without any warning or explanation, remain a few weeks, and then disappear slowly. Over 18% of all children have one or more tics at some point in their development.

If tic(s) are present for less than a year and do not recur, we say that the child has a "transient" tic condition. The transient tic condition observed in children is generally benign and usually does not require treatment.

If there is a history of a number of tics that have been present -- even if not continuously -- for more than a year, we say that there is a "chronic" tic condition. A chronic motor tic condition is one in which the individual has one or several motor tics (but no vocal tics) on and off for more than a year, while a chronic vocal tic condition is one in which there has been one or more vocal tics (but no motor tics) on and off for more than a year.

If the individual has a history of a number of motor tics and at least one vocal tic, and tics have been present on and off for more than a year and there has been a pattern where the tics emerge, get worse over weeks, then ease up, then the individual may have Tourette's Syndrome (TS). The word "may" is important, because there are other conditions that could produce multiple tics without the individual having Tourette's' Syndrome. There are no brain or blood tests that can definitely prove a child or teen has TS: the diagnosis is a clinical one, based on history, observation, and reports.

Approximately 3% of children in regular education classrooms may have Tourette's Syndrome; more than 7% of children in special education have Tourette's Syndrome. The majority of these children have never been diagnosed.

In the majority of cases, the first tics of Tourette's Syndrome are usually simple motor tics of the head, face, neck, and shoulder region or simple phonic tics. Eye blinking is the most common 'first tic,' but it is important to remember that having this tic does not necessarily indicate that the child will develop Tourette's, as approximately 1 in every 5 children will have a tic at some point in their development.

The first tics of TS are often erroneously thought to be "nervous habits," allergies, or unexplained colds. For example, a child who suddenly starts sniffing may be thought to have a cold or allergies, but the pediatrician may find no evidence of a cold and no clear allergy symptoms such as rhinitis. Similarly, a child who suddenly starts blinking their eyes a lot may be thought to have some vision problem or allergies, but on examination, there will be no evidence to support the notion that the blinking is allergy-related.

In most cases, after a tic first appears, it will increase in frequency and severity for a few weeks to a month or so, and then start to subside. Eventually, it usually disappears completely. Unless the parents or teachers are already aware of a history of tic disorders in the family or are familiar with tics or Tourette's Syndrome from other sources, the first tics are not likely to be recognized as tics.

Following the disappearance of the first tic (or tics), a few months may go by and then the tic may re-emerge or a new tic may appear. The tic (or tics) will increase in frequency and severity over weeks and then subside and disappear.

While the average age of onset of TS is 6 - 7 years old, there are many cases where parents later realized that their child's tics had actually started much younger. In almost all cases, TS emerges before age 18, but there are exceptions. In some children, TS may emerge more forcefully or explosively. A child with no recognized history of tics may suddenly erupt in a number of tics within a very short period, or the child may present with complex tics instead of simple tics. Another situation in which severe tics or symptoms may emerge is those cases that appear to be related to infections (PANDAS).

HOW ARE TICS EXPERIENCED AND CAN THEY BE SUPPRESSED?

Even though tics are considered to be "involuntary" or "unvoluntary," many individuals report a sensory basis for their tics -- they feel the need to tic building up as a kind of tension in a particular anatomical location, and they feel that they consciously choose to release it. The sensations and internal events leading up to the expression of the tic are often referred to in the literature as "premonitory sensory phenomena." Young children are often unaware of their tics and generally do not report such premonitory urges. The awareness of the premonitory phenomenon seems to take a developmental leap around age 14.

Tics can sometimes be suppressed, but most people's experience is that the tics will eventually be released. Thus, if we were to ask someone who felt that the tics were consciously released to not tic, we might observe that they could suppress a tic for a while, but eventually, they would release it. As one child put it, "I can stop ticcing when you can stop breathing." Developmentally, the child's ability to suppress tics seems to increase around age 10, although any one child may not have much ability to suppress any tic for any length of time.

What happens if the individual tries to suppress the tics? Some individuals have no control at all over their tics, while others have varying degrees of control. Most adults report that their ability to modify or suppress their tics improved as they matured.

With young children, it is important to remember that the child may not be aware of their tics, and even if they are aware, they may have no ability to suppress them. Asking a child who has tics to suppress them is generally not a good idea because:

• the effort involved in suppressing the tics will distract the child from whatever else is going on that they should be paying attention to, and
• the effort spent in suppressing tics is stressful and can produce fatigue and/or irritability, and when the tics are eventually released, they may be more explosive.

It is a common phenomenon that children or adolescents who try to suppress their tics in school all day (with varying degrees of success) will come home from school, walk in the door, and explode in tics -- often accompanied by a lot of emotional behaviors.

As noted earlier , tics tend to come in bursts or "bouts." The child or adolescent may have a bout of ticcing, followed by a period of calm, and then another bout of ticcing. Dr. James Leckman talks about this pattern as being one of "bouts within bouts within bouts," whereby bursts of tics may be experienced throughout the day, over days, over weeks and months.

When the number of bouts within the day is increasing, we say that the child is in a "waxing" cycle. As the number of bouts within the day or over days decreases, we say that they are in a "waning" cycle. These waxing and waning cycles are a hallmark of TS.

How does a particular bout end, however? For many individuals with Tourette's, there is a sense that the tic needs to be performed or released until they achieve a "just so" kind of sensation or experience. An analogy might be to think of the last time that you had a mosquito bite. You became aware of the itch and need to scratch. You may have been able to delay scratching or to try to substitute scratching near the bite instead of directly on it, but you continued doing something until the itch was relieved or you got some "just right" sensation -- either a feeling in the skin or the sight of blood let you know that you could stop. The sensory phenomena and the "just so" or "just right" kind of tic experience seem to be more common in patients who have Tourette's or Tourette's plus Obsessive-Compulsive Disorder than in patients who have just Obsessive-Compulsive Disorder.

Based on research and clinical experience, however, it is important to note that although about 10% of all children with TS will have "just TS," the vast majority will have one or more other conditions as well. These associated conditions are described elsewhere on this site.

LONG-TERM PROGNOSIS

Most cases of TS are thought to be "mild," meaning that the individual does not seek treatment and/or does not experience significant interference in their life from their tics. If tics become problematic, there are a variety of medications that may provide some relief from the tics and at least one empirically validated non-medication treatment for tics.

In the first years after onset, many people report that the waxing periods tend to worsen from one waxing cycle to the next. The child may experience more tics and/or more severe tics over time, and there seems to be a tendency for things to get worse before they get better. The good news is that for many (but not all) individuals, the tics will ease up significantly or go into remission in the teen years. A report by Leckman et al. (1998) suggests that tics seem to reach their peak severity between the ages of 10 - 12 in the majority of cases, and that by age 18, half of the children may be virtually tic-free, with other children showing significant improvement.

IMPACT OF TICS ON SCHOOL FUNCTIONING

Based mainly on parental surveys, anecdotal reports, and my own experiences as a psychologist and parent, it appears that tics may directly impact academic functioning in the following ways:

• Simple motor tics of the eyes, head, and neck region may interfere with reading activities.
• Simple motor tics may also interfere with handwriting activities.
• Children with vocal tics may be reluctant to read aloud in front of their peers or may hesitate to ask questions in class.

The above are just some examples that have been noted by parents and individuals with TS, and are not intended as an exhaustive list of possible types of interference. While we should never assume that a child's tics are creating interference for him or her, an informed teacher can be alert to possible interference or distress and the need for some accommodations.

Do children with TS have a greater risk of learning disabilities? Because some studies have not isolated children with TS-only from those with TS-ADHD, it's not yet clear whether TS by itself actually increases the risk for a learning disability, although some sources would indicate that students with TS are more likely to have math and written expressive LDs than their non-TS peers. If the child with TS does have ADHD as well, there is an increased risk of learning disabilities and a significantly increased risk of referral for special education.

In general, children with uncomplicated TS (TS-only) are more likely than their non-TS peers to have problems with visual-motor integration, which may impact handwriting and copying from the blackboard. They may also need more time and/or testing accommodations due to interference from tics. Given a supportive environment that makes reasonable accommodations and that provides support for peer issues, children with uncomplicated TS should be able to learn and perform commensurate with their non-TS peers. When the child with TS also has ADHD, however, the ADHD is a significant predictor of school-related problems.

In an Internet survey, Packer (2005, available on request) asked parents or guardians of children and adolescents with Tourette's to assess the impact of tics on academic functioning, peer relationships, and other activities. While the majority reported at least some impact on academic functioning and peer interactions, the greatest impact of tics appeared to be on the child's self-esteem about school and on family functioning.

The notion that tics could lead to impaired peer relationships has some support in a number of published studies that indicate that children and teens with Tourette's are more likely to experience peer rejection due to their tics. Even those students who "only" have tics may need your support to develop normal peer relationships.

VARIABILITY IN TICS AND SYMPTOM SEVERITY

One phenomenon that has often been reported is that under some conditions, children may not tic at all. As just one example, children who might be ticcing quite a bit may not tic at all in the doctor's office. Similarly, they may exhibit very few tics in school, due to either involuntary suppression or voluntary attempts to suppress their tics. Those who are not knowledgeable about tics or Tourette's generally misinterpret this phenomenon to mean that tics are more controllable than they actually are.

When someone who has Tourette's is totally and constructively engrossed in something, the tics may stop altogether. This is not generally experienced as a stressful form of suppression, and suggests an important strategy for working with students in the classroom:

Because children who tic actually tend to tic less when they are fascinated with classroom tasks or activities, the author has often encouraged schools to put the student in enrichment or gifted programs that are more likely to enable them to focus constructively.

Other factors can also influence the frequency or severity of tics: