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, 2006

Article Page 1 2 3 4

Psychosocial Consequences of Tourette's

TS is not a fatal disorder, but it can be a stigmatizing one for those who live in environments that do not or cannot support or tolerate anyone who might appear a bit different. The media has created a public misperception of what most people with TS can do and what they are like. As a direct consequence, many people are embarrassed to admit that they or their child has TS. This is extremely unfortunate as by attempting to "hide" any TS, we perpetuate the myths.

In the author's experience, parents are often most concerned about the psychosocial impact of TS, and worry about "How will other children view my child? Will teachers think he's crazy? Will he be teased because of his tics?" Teenagers who are already struggling with the agonies of adolescence may feel particular concerns as to how their symptoms may affect their attractiveness to others or their ability to form friendships and romantic relationships.

Even children or adults with extremely mild tics may experience psychosocial consequences. Two surveys of parents of children with TS indicate that many children are teased because of their tics, and a subset are actually rejected because of their tics (Hagin et al., reported in Silver & Hagin, 1990; Packer, 2005). Even young children may reject peers for their tics. Research by Stokes (1991), Friedrich et al. (1996) and ongoing research by Dr. Doug Woods and his colleagues suggest that parents do have cause to be concerned about the child being viewed as less socially acceptably because of their tics. To date, however, there has been little research that has addressed whether an adequate peer education program could eliminate any negative peer evaluations, although a preliminary study (Woods & Marcks, 2005) suggests that peer education may be helpful. Parents and educators can find other materials on tic-related issues in school in the Education section of this site.

Elstner et al. (2001) assessed quality of life (QOL) in 90 adult patients with TS. The QOL scores in TS patients were significantly lower than those of members of the general population, with greatest impact due to mental health, social functioning, and role limitation from emotional and physical problems. The features patients identified as having the greatest impact on quality of life were motor tics (25% of participants rated their tics as having a severe impact), concentration (23%), depression (25%), memory (17%), vocal tics (11%), and anger/aggression (15%).

The above should not be interpreted to mean that tic severity may be the best predictor of quality of life for a child or adult with TS. A number of studies and clinical experience suggest that when a child or adult has "TS+," the tics are often the least of their problems. In a recent study of 40 children with TS, ADHD, and OCD, for example, Bernard, Stebbings, et al. (2003) reported that parental reports on the children's quality of life indicated that no measure of quality of life was correlated with objectively determined tic severity, while OCD scores and ADHD scores were significantly correlated with some measures of QOL.

Pappert, Goetz, et al. (2003) also provide some lifespan data of interest here (their study was described in an earlier section of this overview article). For their sample, they found that 52% of children seen in their clinic experienced social or educational dysfunction. Of these, 39% required special education placement, 10% had been retained at least 1 year in school, and 29% experienced disciplinary problems. Their findings are consistent with other published reports from tertiary clinics, but it is their follow-up data on these children as adults that is of special interest and concern here. Whereas half the sample experienced significant social and education dysfunction as children, (only) 32% of the same sample experienced social or education dysfunction as adults. On a positive note, all of the sample participants had completed high school and at least two years of college (adult sampling was conducted while the individuals were in their 20's). The investigators found that 71% of the adults were currently employed or pursuing their education. Of the adults who had social or educational dysfunction as children, 50% had social or education dysfunction as adults, and 13% of children who had not experienced education or social dysfunction went on to develop social or education dysfunction. Out of their sample of 31, then, while the majority were doing well and were well-integrated in their communities, over one quarter of the adults were disabled with problems that included alcohol abuse, unemployment or criminal activity. That these measures did not correlate with tic severity measures but did correlate with early childhood dysfunction suggests that early and effective interventions for comorbid conditions (perhaps even more so than for tics) may impact on the prevention of dysfunction in adulthood.

What Causes Tourette's Syndrome and Is There a Cure?

Tourette's Syndrome (TS) appears to be familial (i.e., it "runs" in families) in the vast majority of cases, suggesting a genetic component or an inherited vulnerability to it, but our understanding of the mode of genetic transmission is incomplete and controversial. At the present time, it appears that there is likely to be a significant genetic factor, although prenatal, perinatal, autoimmune, and environmental factors can affect or modulate the severity of symptoms. Recent research by Abelson et al. (2005) reviews some of the genetic research and identified a new candidate gene, SLITRK1.

Gender is also linked to expression of TS: boys are significantly more likely to develop TS than are girls. One question adults often ask when they are thinking of starting a family is whether there are any tests such as amniocentesis that can screen or test a fetus for Tourette's Syndrome. The answer is "not at this time."

In some of the seminal research on this topic, Pauls et al. (1986) reported that male offspring would have almost a 50% chance of having symptoms of TS, and a .99 (almost certain) probability of having either TS, a chronic motor tic disorder, or Obsessive-Compulsive Disorder. Female offspring had lower probabilities of showing symptoms of these disorders, but there was still a fairly high probability (.70) that a female child would have one of these disorders.

In more recent research, however, McMahon, Carter, Fredine, and Pauls (2003) approached the problem somewhat differently by looking at the onset of TS in children whose parents have TS and comparing that to the onset of TS in children whose parents do not have TS. Children who were considered "at-risk" and control children were enrolled between the ages of 3 and 6 years and followed with yearly structured assessments over intervals of 2-5 years. Of the 34 at-risk children who were tic-free at baseline, 10 (29%) subsequently developed a tic disorder; 3 of those 10 met criteria for TS. None of the 13 control children developed a tic disorder, supporting the hypothesis of a significant genetic or familial contribution to the onset of tics. Similarly, Obsessive-Compulsive Disorder (OCD) or features or OCD emerged in 11 of the at-risk cases, but not in any of the controls, while Attention Deficit Hyperactivity Disorder (ADHD) occurred in 14 at-risk children but not in any of the controls.

The data described above provide support for familial transmission of TS as well as an association between tics, obsessions and compulsions, and ADHD. The study also provided additional information on whether having two parents with TS increased the risk compared to cases where only one parent has TS. When the rates in offspring were compared, the investigators found that the rates of TS in children with two affected parents were three times the rate observed for children with one affected parent.

A second common question is whether there is any way to predict how severe a child's symptoms might be based on what the parent experienced if the child does develop TS. Based on available reports, there is currently no clearly identified relationship between the severity of tics experienced by a parent in their childhood and the severity of tics experienced by their child(ren). A parent who has mild symptoms might have a child who has severe systems (Kurlan et al., 1988) and vice versa. Lichter and his colleagues (1999) also found that the presence of family history does not predict the severity of motor symptoms or Attention Deficit Hyperactivity Disorder in Tourette's Syndrome.

While we cannot yet predict the severity of tics based on family, family history appears to be correlated with severity of obsessive-compulsive behaviors that are often seen in conjunction with Tourette's Syndrome. Lichter et al. (1999) reported that more severe obsessive-compulsive symptoms were associated with bilineal transmission (i.e., the presence of probable or definite tics or obsessive-compulsive behaviors in both parents or relatives on both sides of the family) than in unilineal transmission (family history on only one side of the family). Children who had a family history of tics or obsessive-compulsive behaviors on both sides of the family were not only more likely to have more severe obsessive-compulsive behaviors, but they were also more likely to exhibit self-injurious behaviors.

There is no cure for Tourette's Syndrome at the present time.

Lest the preceding sound somewhat alarming, it is encouraging to note that family studies suggest that most cases of TS are "mild."

In addition to what appears to be a genetic vulnerability or component, some research also suggests that prenatal events or factors (such as maternal smoking, drug use, exposure to toxins) and perinatal events (such as jaundice, infections) may be associated with severity of TS. While some factors do not necessarily cause TS, they may be correlated with symptom severity in children who do develop TS. Some of the environmental factors that may affect symptom severity are mentioned later in this primer in the section on stress.

While some investigators look to identify specific genetic contributions to TS, other investigators have focused on using neuroimaging techniques to try to identify whether TS is related to a specific abnormality in one or more brain structures or whether it is due to dysfunction in the way the brain's circuitry functions. Some studies do report differences when comparing the brains of those with TS to those who do not have TS. Much research has also addressed the neurochemical transmitters that might be involved in TS. As you read about Tourette's Syndrome, you will also see frequent reference to dopamine, and the symbol "D2," which refers to a particular type of dopamine receptor in the brain. Dopamine has been implicated in other movement disorders, such as Parkinson's Disease, in which there is too little dopamine and movement slows considerably. Studies on dopaminergic function in individuals with TS has produced some fascinating results. A growing body of research also points to the role of structures in the brain known as the basal ganglia. For a nice news summary of recent neurological investigations of Tourette's, site visitors may wish to read an online piece in Science Daily from Nov. 3, 2004.

Stress and Tourette's Syndrome

While stress does not cause TS, it would seem almost intuitively obvious that stressors might make the symptoms worse for at least some individuals with tics. Stressors might take the form of environmental or ambient weather factors such as temperature, illness factors such as infection, or might include potential psychosocial stressors such as hassles on the job or in school, demanding environments, breakup of romances or marriages, death in the family, or any major life event.

With respect to environmental factors, children or adults with TS may find that their symptoms are worse during allergy seasons, and preliminary data suggest that a subset of individuals with TS may also experience tic worsening associated with increased heat or room temperature (Scahill et al., 2001). Environmental factors were also noted to be significantly correlated with tic severity in another report by Snider et al. (2002), who found that motor tics and problem behaviors were significantly higher during the winter months of November through February when compared to the spring months of March through June (a finding which does not match this author's own clinical and consulting experience that suggests that although tics are likely to worsen in the winter, they also worsen in the spring and the behavior problems are often worse in the spring).

Because correlations between physiological responses and ambient environmental factors may not be present for all individuals and because such correlations may also vary by region and direction of correlation in individuals exposed to the same environmental conditions (Wenger, 1959; Packer, 1979), more research is needed before we can truly understand the contribution of ambient environmental factors to variability in tic severity.

In the past few years, a few additional studies have shed new light on the question of the relationship between everyday types of stressors and tic severity. For example, Findley and her colleagues (2003) reported that children with TS and OCD reported greater psychosocial stress than did their control peers, and that the reported level of psychosocial stress correlated with self-reports of tic and obsessive-compulsive symptom severity.

Wood et al. (2003) attempted to determine if emotional state was related to tic factors, and if any changes in tics were mediated by changes in the autonomic nervous system. In their study, four children with TS were videotaped while they were watching a movie. The investigators found that tic severity was worst during periods associated with anticipation, resolution of emotional changes, and lower concentration, while tic severity was lowest during periods of anger and happiness, and intermediate in severity during periods of sadness and fear. Tic severity did not correlate with autonomic changes in heart or respiratory rate. It is important to note that both anger and happiness were associated with decreased tic severity, suggesting that it is not necessarily the positive emotional valence (happiness) that is associated with tic reduction.

Using a self-report method of stressors and tic severity over a 12-week period, Hoekstra et al. (2004) looked at the relationship between stressors and tic severity in an adult sample with TS and in a pediatric sample. Throughout the study, participants filled out weekly questionnaires about the occurrence of small life events (SLE) -- the type of events most of us would consider "daily hassles" -- and they rated their own tic severity. In looking at the group data, there were no correlations between SLE and tic severity measures in the pediatric group, and a weak but statistically significant (i.e., reliable) relationship between negative small life events and tic severity in the adult group. Overall, and keeping in mind the limitations of their design (including the lack of objective verification of tic severity), the expected relationship between SLE and tic severity was not confirmed.

Because group data and group analyses can sometimes obscure significant effects within individuals, the investigators also looked at individual correlations. They reported that a minority of the pediatric sample (21%) and adult sample (18%) did exhibit significant association between the reported frequency of small negative life events and reported tic severity. To complicate the picture even more, however, the direction of the correlation varied across individuals: in some cases, negative small life events were positively correlated with tic severity, but for other individuals, negative small life events were negatively correlated with tic severity. The investigators conclude, "Contrary to traditional views, in general, life events do not account for changes in tic severity. Only in a minority of tic disorder patients do fluctuations in symptom severity appear to be associated with possibly stressful small life events." Since their study was limited to small life events and not major stressors or what might be perceived as major stressors, their findings may actually be more applicable to the kinds of everyday stressors children and adults with TS encounter in school or on the job. Hopefully, their research will inspire more research on this important topic. The investigators appropriately noted the limitations in their design and methodology, but in my opinion, this exploratory study is quite important for a number of reasons, not the least of which is that it reminds us that sweeping generalizations and "common knowledge" or "common sense" may not always lead to an accurate understanding of phenomenon.

If stress does make the symptoms worse for a particular child or adult, does relaxation make the symptoms better? While relaxation may lead to less tics, some people tic more as they start to relax and let all the tics out. Similarly, a child or adult may come home from school or work and seemingly "explode" in tics for the first hour or so. Under such circumstances, the most likely explanation is that they are "letting it all out." Tics generally decrease significantly or disappear completely during sleep.

Information Section: Conditions
Condition: Tourette's Syndrome
Article: Primer on Tourette's Syndrome
Source: Leslie E. Packer, PhD
File Last Updated: February, 2006

Article Page 1 2 3 4

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