Tourette Syndrome Plus - Conditions - Tics and Tourette's Syndrome

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Information Section: Conditions
Condition: Tourette's Syndrome
Article: Primer on Tourette's Syndrome
Source: Leslie E. Packer, PhD
File Last Updated: December, 2004

Article Page 1 2 3 4

Tics and Tourette's are Not Rare Conditions

For many years, TS was considered to be a rare disorder, but tics and TS are now recognized as fairly common childhood-onset conditions. There is still some controversy about its rate in the general population. The estimates you may read in the literature depend, in part, on how old the subjects were in the study (studies of adults tend to significantly underestimate rates in children), and whether the subjects were drawn from clinical settings or from the general community, to name but two factors. That said, a study by Kurlan, McDermott, et al. (2001) indicates that over 19% of children in regular education classes have tics and over 23% of children in special education classes have tics. Their study also indicated that almost 4% of children in regular education meet diagnostic criteria for Tourette's Syndrome, while over 7% of children in special education have TS. In most cases, tics and/or TS were usually undiagnosed. These rates are somewhat higher than what was reported in UK schools.

Although there has been considerable variability in estimates of rates in children in mainstream schools, all recent studies have reported higher rates in special education settings than in mainstream settings. The disproportionate representation of children with TS in special education does not prove that it is the tics or TS that are leading to school problems, however, and parents of children with tics should not fear that the tics, by themselves, will lead to a placement in special education. At the present time, and based on limited available research, it may well be the case that children with uncomplicated TS are not generally in need of special education although those who have TS in the presence of other conditions such as Attention Deficit Hyperactivity Disorder may be represent a population with increased need for special education.

Like many other conditions, TS is much more common in males than in females.

What Is It Like to Experience Tics?

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."

Kwak et al. (2003) attempted to explore these premonitory urges with 50 patients with TS. Over 90% of their sample reported premonitory urges prior to motor tics, with participants reporting that their most common sensation was an urge to move and an impulse to tic ("had to do it").

Can Tics be Suppressed?

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.

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, and recent research supports the notion that as the child matures, their awareness of their tics and their ability to suppress them increase.

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 young 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.

If you are a parent or teacher who is thinking of discussing the child's tics with him or her, keep in mind that not all are aware of their tics. When a child or adult denies ticcing it may not mean that they are in "denial." They may really be unaware of their movements or sounds.

Banaschewski et al. (2003) conducted a survey on premonitory sensory phenomena (PSP) and suppressibility of tics in children and adolescents. Over a third of the children and adolescents in the sample reported experiencing PSP, and almost two-thirds reported being able to suppress their tics. Slightly more than one quarter of the sample (28%) reported both PSP and the ability to suppress tics, indicating that the majority of children and teens do not have awareness of sensory urges building up or the ability to suppress their tics. Changes in reports were noted at two ages developmentally. At age 10, there seemed to be an increased ability to suppress tics, and at age 14, there was more reporting of PSP. It is important to note that awareness of premonitory sensory urges did not precede ability to suppress tics, but rather, ability to suppress tics actually preceded awareness of (or experience of) premonitory sensory urges. The developmental aspects of suppressibility and awareness are both important considerations when considering any behavioral intervention for tics.

How Does Tourette's Syndrome Usually Start?

In the majority of cases, the first tics 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.

The tic increases in frequency and severity for a few weeks to a month or so, then starts to subside and eventually disappears. 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.

The pattern of new tics emerging and worsening ("waxing") followed by a symptom decrease ("waning"), a relative "lull," and then new tics emerging and starting to increase in severity and frequency (repeat cycle) is characteristic of TS. Indeed, this variability is the hallmark of TS, and is frequently a source of confusion for parents and educators.

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).

Because of the changing anatomical location of the tics, the long tic-free periods between bouts of tic worsening, and because tics are often misunderstood as being due to other things, it used to take years before someone was properly diagnosed. In the last few years, however, we have seen evidence that children are being diagnosed sooner.

Information Section: Conditions
Condition: Tourette's Syndrome
Article: Primer on Tourette's Syndrome
Source: Leslie E. Packer, PhD
File Last Updated: December, 2004

Article Page 1 2 3 4

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