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: February 2009

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.

Because symptoms of TS tend to diminish with maturation, the rates of TS are lower in older individuals. A recent review of data on TS from an international perspective and across the life span suggests that the prevalence of TS in the general population is slightly under 1% (Robertson, 2008).

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," "urges," or by some other term. Prado and her colleagues (2007, 2008) review the literature on these experiences and note how they are reported in both TS and Obsessive-Compulsive Disorder patients, but moreso in TS. These urges or internal sensations or perceptions that something is "not just right" precede tics and compulsive behaviors.

Although one early study reported that 28% of patients with TS reported such urges or phenomena (Chee & Sachdev, 1997), a more recent study by Kwak et al. (2003) reported that 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 tasks requiring their attention and may decrease their accuracy on the task (cf, Conelea & Woods, 2008) .

Parents frequently report 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. For years, many of us considered these explosions of tics to represent an actual worsening of tics due to inhibition or suppression of tics during the school day. Recent research, however, casts some doubt on that interpretation. Data from some studies suggest that even when tics are being consciously and actively suppressed, there is no rebound effect (Himle & Woods, 2005; Verdellen et al., 2007).

Keeping in mind that each child is unique, the parents and child are often the teacher's best source of information about a particular child's tics and patterns. But if you are a parent or teacher who is thinking of discussing the child's tics with them, also keep in mind that not all young children 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. And just talking about their tics may induce a temporary worsening of their tics (Woods, Watson, et al. 2001).

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 with 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.

If tics are actively suppressed, what happens to any preceding urges? Do they diminish over time or do they intensify and then diminish, or what? Woods and colleagues found that suppressing tics when reinforcement was provided was associated with intensified urges during tic suppression for 5-minute periods (Himle & Woods, 2007). Their data provide some support for the notion that people tic to decrease or alleviate the unpleasant sensation that is building up. But what if we allow the period of tic suppression to go even longer? Would the urge continue to build or would it eventually extinguish? Verdellen et al. (2008) provide data indicating that the urge does decrease both within 2-hour sessions and between sessions using an Exposure-Response Prevention treatment. Exposure-Response Prevention for tics is the same approach used in treating Obsessive-Compulsive Disorder.

What factors predict ability to suppress tics or severity of sensory urges during training? Data provided by Woods, Himle, et al. (2008) suggest that errors of ommission on a continuous performance task correlated with ability to suppress tics, while Verdellen et al. (2008) found that tic frequency at baseline - but not tic severity - was correlated with reductions in frequency of tics and severity of sensory urges during training sessions.

So.... can tics be actively suppressed without any rebound effects or worsened sensory urges? The answer appears to be "Possibly, but not in children under 10, and not without risking distracting the person from attention-demanding tasks." Hopefully, longer-term studies will shed light on whether suppression can become more automatic and less of a risk of distracting the individual. In any event, these studies offer hope and promise of nonmedication treatments that may be of value, and suggest that what we all described as "involuntary" may be more modifiable than we had recognized.

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, but the delay depends on a number of factors, including awareness by doctors, presence of other disorders, and age of the child at time of onset of symptoms. For example, in Israel, the median delay to diagnosis was only 6 months, but it was longer in cases where vocal tics were the first presentation or where the child was older. The co-occurrence of other disorders resulted in a shorter delay to diagnosis (Shilon et al., 2008). In Denmark, the median delay to diagnosis was 2.8 years (Mol Debes et al., 2008), while in Poland, the delay in diagnosis was on the order of 3.9 years (Janik et al., 2007).

Information Section: Conditions
Condition: Tourette's Syndrome
Article: Primer on Tourette's Syndrome
Source: Leslie E. Packer, PhD
File Last Updated: February 2009

Article Page 1 2 3 4

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