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Email Interview with Ms. Kathy Giordano 

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Email Interview with Ms. Kathy Giordano 

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Hi Madison…..
First, I want to thank you for agreeing to provide awareness regarding TS.  People with TS are frequently talented, creative and have above average academic abilities.  It is one of the most complex disorders for a variety of reasons:
·         Symptoms vary from very mild to debilitating
·         Symptoms wax and wane as well as change frequently as a young person
·         There are many common related disorders that interfere with academic and social performance
·         Symptoms frequently appear to be purposeful resulting in vast misunderstanding and too often punishment and bullying
I will attempt to answer your questions below in the text of your email.

In your expert opinion, how do you think I can create a program with a healthy balance of helpful tic management tactics and independence?  It’s true that while symptoms vary in appearance and difficulties, the majority of people with TS want to be independent and lead a life just as other people desire – a career, friends, family, children, home of their own, be respected in the community. The way this is best accomplished is to make symptoms a non-issue. We accomplish that by educating people about TS because symptoms typically are reduced in an atmosphere of acceptance and minimal support as need.  You used the correct word “management”.  The goal for people with TS is to ‘manage’ their symptoms.  We now know that TS is a disorder of disinhibition.  The majority of symptoms are URGES that are difficult to inhibit.  In my presentations, I discuss urges that people without TS may be able to identify with such as attempts at not scratching an itch – particularly if you have poison ivy.  I sometimes ask the audience to not blink for 2 minutes.  They will begin to have an urge to blink which gets stronger and stronger.  By reminding them not to blink, it actually becomes more difficult and the urge becomes stronger.  The same is true of TS.  If we remind people to not do their symptoms or if they are in a setting where they know that their symptoms will be bothersome, the only thing they can think of is completing the urge and the other thing they are thinking of is suppressing the symptoms.  I share with the audience that I don’t have a need to touch a park bench until I see a sign that says WET PAINT – Don’t Touch.  I then have a strong need to touch it.

So again, the best environment is acceptance, and ignoring symptoms.  The way we accomplish that is through educating people with accurate information – not what they see in movies or cartoons.

How can I change their perception of TS effectively and educate others on the importance of acceptance?  The Tourette Assoc. trains Youth Ambassadors who go into schools and discuss their TS as well as their strengths.  When that’s not possible, showing a short video can be helpful.
·         Link to Brief documentary “75 Watts”  which won Best Documentary Short at the 2011 Palm Spring International Film Festival and was nominated for an Academy Award.  http://youtu.be/6un7MQOyjSU
·         HBO Special I Have Tourette but Tourette Doesn’t Have Me                                                          http://tsa-usa.org/ZHBO/VideoPlayer.html
·         Interview with young people with TS. https://www.youtube.com/watch?v=e8HtTb0Vk_o   12 minutes;
·         Link to a power point for educators and script that may be followed http://tourette.org/EducationInservice/Inservice2015.html

In your expert opinion, which do you think would be most beneficial to create an overall more accepting, productive educational environment? That’s a really difficult question, but I think I would say that educating Teachers, Counselors, Principals…the entire school staff actually would be best because they can educate the students.  Plus, students take the cues from teachers. So when teachers don’t understand and say or doing things that are damaging to a student with TS, the other students will see it as being ok to act similarly.  I have seen schools were bullying is not an issue because the entire school environment is one of acceptance.

Would it be most productive to direct the majority of my attention to educating teachers in the Baton Rouge area on the disorder, or to focus on spreading awareness and promoting acceptance throughout the student body? Both.  My son who is the young man in the 75 Watts documentary does assemblies for students.  By presenting to students, teachers must also be in attendance.  He accomplishes both with these assemblies.

Thank you so much for taking the time to answer my questions. My pleasure.  If you would like to speak with me, email me a date and time that would work for you as well as a phone # for me to call.

Thank you again!!!!
Kathy

Kathy Giordano
Education Specialist
Tourette Association of America
585-346-6598
www.tourette.org<http://www.tourette.org/>

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Search our Resource Library

This resource library is a collection of articles, pdfs, and videos that provide in-depth and rich resources about Tourette Syndrome and Tic Disorders.

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Resource Library - Tourette Association of America

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Resources and Support

At the Tourette Association of America we are dedicated to providing the most comprehensive resources and support for all of those in the Tourette community. In this section of our website, you will find resources of the following topics:

Tools for Educators: Comprehensive education resources for parents, kids and teachers

Tools for Parents: Advice, guidance and valuable information for parents of children with Tourette or tics.

Tools for Medical Practitioners: Information on diagnosis, treatment and research

Tools for Law Enforcement: Training materials related to Tourette Syndrome

Youth Ambassador Program: Teen education, empowerment and advocacy program

Find a Doctor: Search by state and other filters

Find a Local Chapter or Support Group: Search by State

Resource Library: A comprehensive database on all topics related to Tourette and Tic Disorders. Fully Searchable

**NEW** TAA Webinars: Current webinars given by doctors and therapists on various topics related to Tourette Syndrome

The Tourette Association employs full-time Information and Referral staff who are available to assist you in both English and Spanish. You can call 888-4-TOURETT or use the Contact Us form. In addition, you will find a wealth of information on various topics in our searchable Resource Library.

Finally, we understand that Tourette Syndrome and Tic Disorders present uniquely across individuals. One size does not fit all, so we encourage you to reach out to us. We are here to help you develop personalized plans and strategies that meet your specific need.

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resource library of articles, videos and pdfs

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At the Tourette Association of America we are dedicated to providing the most comprehensive resources and support for all of those in the Tourette community. In this section of our website, you will find resources of the following topics: Tools for Educators: Comprehensive education resources for parents, kids and teachers Tools for Parents: Advice, guidance and valuable information for parents of children with Tourette or tics.

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A Film About Matt Giordano Director: John Cullen DOP: John Cullen Editor: Paul Proulx Colourist: Wade Odlum Online Artist: Scott Renaud Executive Producer: Pamela Hamilton Sparks Productions Stealing Time Editing Alter Ego VAPOR Special thanks to: Matt Giordano www.johncullenphotographer.com

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Search our Resource Library

This resource library is a collection of articles, pdfs, and videos that provide in-depth and rich resources about Tourette Syndrome and Tic Disorders.

You can choose one or more filters in each category to expand or narrow down your search. Leaving a filter choice blank will return the most inclusive results. Alternatively, you can use the field on the right to use key words to drive your search.

This library search tool was made possible with funding from the Centers for Disease Control and Prevention.

**NEW** TAA Webinars: Current webinars given by doctors and therapists on various topics related to Tourette Syndrome

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Data and Statistics | Tourette Syndrome | NCBDDD | CDC

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Data and Statistics | Tourette Syndrome | NCBDDD | CDC

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Centers for Disease Control and Prevention

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* The data on this page are from the study, "A National Profile of Tourette Syndrome, 2011-2012." unless otherwise noted. [ Read article] ¹ [ Read article on findings for 2007-08 data]²

How many children have Tourette Syndrome?

We do not know exactly how many people have Tourette Syndrome (TS).

A CDC study found that 1 of every 360 (0.3%) children 6 - 17 years of age in the US have been diagnosed with TS based on parent report; this is about 138,000 children.

Other studies that included children with undiagnosed TS and children with diagnosed TS have estimated that 1 of every 162 children (0.6%) have TS.

This suggests that about half of children with TS are not diagnosed.

Among children diagnosed with TS,

37% have been reported as having moderate or severe forms of the condition.

Boys are three to five times more likely to have TS than girls. People from all racial and ethnic groups can have TS. Non-Hispanic white children are twice as likely to have a TS diagnosis as Hispanic and non-Hispanic black children.

Children 12 - 17 years of age are twice as likely to have TS as children 6 - 11 years of age.

How many children with TS have another disorder?

Among children diagnosed with TS, 86% also have been diagnosed with at least one additional mental, behavioral, or developmental condition, such as:

Attention-deficit/hyperactivity disorder (ADHD), 63%;

Behavioral or conduct problems, 26%;

Anxiety problems, 49%;

Depression, 25%;

Autism spectrum disorder, 35%;

Learning disability, 47%;

Speech or language problem, 29%

Intellectual disability, 12%, and

Developmental delay affecting his or her ability to learn, 28%.

More than one-third of people with TS also have obsessive-compulsive disorder.

42.6% have at least one co-occuring chronic health condition.

Life Course of TS

In most cases, tics decrease during adolescence and early adulthood, and sometimes disappear entirely; however, many experience tics into adulthood and, in some cases, tics can become worse in adulthood.

One study that followed youth with TS over time found that at 18 years of age, almost half (47%) of the youth had been tic-free the week before they were interviewed, just over 10% had minimal tics, over a quarter (28%) had mild symptoms, and 11% had moderate to severe tics.

Public Health Impact of TS

CDC is working to understand TS and to improve the health and wellbeing of people with TS. Learn about what public health can do to bridge the gaps in knowledge to help individuals with Tourette Syndrome.

References

1. Bitsko, RH, Holbrook, JR, Visser, SN, Mink, JW, Zinner, SH, Ghandour, RM, Blumberg, SJ (2014). A National Profile of Tourette Syndrome, 2011-2012. J Dev Behav Pediatr 35(5), 317-322.

2. Centers for Disease Control and Prevention. Prevalence of diagnosed Tourette Syndrome in persons aged 6-17 years - United States, 2007. MMWR Morb Mortal Wkly Rep. 2009; 58(21): 581-5.

3. Leckman, JF, Zhang, H, Vitale, A, Lahnin, F, Lynch, K, Bondi, C, et al. Course of tic severity in Tourette Syndrome: the first two decades. Pediatrics. 1998; 102(1 Pt 1): 14-19.

4. Eapen, V, Crncec, R. Tourette Syndrome in children and adolescents: special considerations. J Psychosom Res. 2009. 67(6): 525-32.

5. American Psychiatric Association. Diagnostic and statistical manual of mental disorders: Fifth edition, DSM-5, Washington, DC; 2013.

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Data and Statistics | Tourette Syndrome | NCBDDD | CDC

# data[].attributes.attachment_link.description
The data on this page are from the study, "A National Profile of Tourette Syndrome, 2011-2012." unless otherwise noted. [ Read article] 1 [ Read article on findings for 2007-08 data] 2 We do not know exactly how many people have Tourette Syndrome (TS).

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JAMA Network | JAMA Pediatrics | Adulthood Outcome of Tic and Obsessive-Compulsive Symptom Severity in Children With Tourette Syndrome

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JAMA Network | JAMA Pediatrics | Adulthood Outcome of Tic and Obsessive-Compulsive Symptom Severity in Children With Tourette Syndrome

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Background Tourette syndrome (TS) is a childhood-onset neuropsychiatric disorder that is characterized by both motor and phonic tics. One half to two thirds of children with TS experience a reduction or complete resolution of tic symptoms during adolescence. At least one third of adults with TS have comorbid obsessive-compulsive disorder (OCD).

Objectives To clarify the clinical course of tic and OCD symptoms in children with TS and determine if baseline clinical measurements in childhood are associated with future symptom severity in late adolescence and early adulthood.

Design Prospective cohort study.

Setting Yale Child Study Center tic and OCD outpatient specialty clinic.

Participants Forty-six children with TS who received a structured clinical evaluation prior to age 14 years.

Main Outcome Measures Expert-rated tic and OCD symptom severity at follow-up interview an average of 7.6 years later (range, 3.8-12.8 years).

Results Eighty-five percent of subjects reported a reduction in tic symptoms during adolescence. Only increased tic severity in childhood was associated with increased tic severity at follow-up. The average age at worst-ever tic severity was 10.6 years. Forty-one percent of patients with TS reported at one time experiencing at least moderate OCD symptoms. Worst-ever OCD symptoms occurred approximately 2 years later than worst-ever tic symptoms. Increased childhood IQ was strongly associated with increased OCD severity at follow-up.

Conclusion Obsessive-compulsive disorder symptoms in children with TS became more severe at a later age and were more likely to persist than tic symptoms.

Tourette syndrome (TS) is a childhood-onset neuropsychiatric disorder that is characterized by both motor and phonic tics. In TS, tics typically begin at age 5 or 6 years and reach their peak severity between 10 and 12 years of age. One half to two thirds of children with TS experience a substantial decrease or complete remission of tics by the end of adolescence. However, the continuation of tics into adulthood can have serious consequences that may include self-injurious tics and those that cause social unease, such as coprolalia. Currently, no clinical measures are known to predict reliably which children will continue to express tics in adulthood.

Motor and vocal tics, the most prominent feature and diagnostic sine qua non of TS, are often neither the first nor the most impairing symptoms that patients with TS endure. In clinical populations, TS frequently co-occurs with obsessive-compulsive disorder (OCD), attention-deficit/hyperactivity disorder (ADHD), and other behavioral, emotional, and learning disorders. In 1 study, 65% of patients with TS in late adolescence regarded their behavioral problems (including ADHD and OCD) and learning difficulties to have had an equal or greater impact on functioning than did the tics themselves.

We conducted this study to clarify the clinical course of tic symptoms and to extend our knowledge of the course of OCD symptoms in patients with TS. We also wanted to assess prospectively whether baseline clinical measurements in children with TS were associated with adult outcome with regard to severity of tic and OCD symptoms. Our a priori hypotheses were that (1) increased severity of tic symptoms and (2) a diagnosis of ADHD in children with TS would be associated with increased tic severity at follow-up and that (3) increased severity of OCD symptoms and (4) a higher IQ in childhood would be associated with increased OCD symptom severity at follow-up.

The 46 subjects included in this study were previously evaluated at the Yale Child Study Center Tic Disorder Clinic (New Haven, Conn) and had previously participated in magnetic resonance imaging studies in childhood. Eligible subjects (1) had a previous diagnosis of TS, (2) underwent magnetic resonance imaging and a detailed evaluation prior to 14 years of age (time 1), and (3) were older than 16 years at follow-up (time 2). Exclusionary criteria in these earlier studies included a history of seizure, head trauma with loss of consciousness, ongoing or past substance abuse, or an IQ lower than 80. Parental written informed consent and subject assent were obtained at both time 1 and time 2. Compensation was provided for participation at both points under the guidelines of the Human Investigations Committee at Yale University, New Haven.

From an eligible sample of 64 subjects evaluated at time 1, 46 subjects elected to participate. Reasons for nonparticipation included subject refusal to participate in follow-up interview (n = 14) or inability to locate subjects (n = 4). Demographic measurements did not differ statistically significantly between participating and nonparticipating subjects as assessed during initial evaluation at time 1 ( Table). However, there was a noticeably higher proportion of cases with comorbid OCD and a lower proportion of cases of ADHD among participating subjects compared with nonparticipating subjects at time 1.

Interview procedure at time 1

Assessment at time 1, when subjects were younger than 14 years, included current and worst-ever measures using the Yale Global Tic Severity Scale (YGTSS) and Children's Yale-Brown Obsessive Compulsive Scale (CY-BOCS). IQ testing was performed using the Kaufman Brief Intelligence Test. The Schedule for Tourette and Other Behavioral Syndromes, which includes the Kiddie-Schedule for Affective Disorders and Schizophrenia Epidemiologic Present and Lifetime Version for diagnosis in children and more detailed sections on TS and OCD, was used to screen for comorbid psychiatric illnesses. Neuropsychiatric diagnoses were established using a best-estimate consensus procedure involving 2 child psychiatrists (B.S.P. and J.F.L.), who reviewed all available clinical and research data.

Interview procedure at time 2

Assessments included current and worst-ever YGTSS and CY-BOCS ratings. Screening for any comorbid psychiatric conditions was conducted with the Structured Clinical Interview for DSM-IV Axis I Disorders. Additional assessments included a thorough medication history, specific inquiry about ADHD symptoms, and ages at worst-ever tic and OCD symptoms. Overall psychosocial functioning was rated using the Global Assessment Scale after the follow-up interview. Eight clinical evaluations relied solely on information provided by a parent who lived in the same home as the research subject.

All statistical procedures were performed using SPSS version 12.0. Histograms were generated to examine the distribution of YGTSS and CY-BOCS scores at time 2. Because of the large number of subjects with no current tic or OCD symptoms at time 2 (YGTSS and CY-BOCS scores = 0), YGTSS and CY-BOCS scores were not normally distributed. To avoid the nonnormality problem for these outcome scales, we transformed them into ordinal groupings prior to hypothesis analysis to maintain gradations in symptom severity while also maintaining ordinal groupings of roughly equal subject number. The ordinal groupings for YGTSS score (range, 0-50) at follow-up used in these analyses were 0 (n = 15), 1 through 9 (n = 11), 10 through 19 (n = 10), and 20 or higher (n = 10). These groupings roughly correspond to absence of tics (YGTSS score, 0), minimal tic symptoms (YGTSS score, 1-9), mild tic symptoms (YGTSS score, 11-19), and moderate to severe tic symptoms (YGTSS score, ≥20). For CY-BOCS score at follow-up (range, 0-40), groupings for ordinal logistic regression were 0 (n = 24), 1 through 9 (n = 10), and greater than or equal to 10 (n = 9). These groupings roughly correspond to absence of OCD symptoms (CY-BOCS score, 0), subclinical OCD symptoms (CY-BOCS score, 1-9), and OCD symptoms of clinical significance (CY-BOCS score, ≥10).

The ordinal logistic regression module of SPSS 12.0 with a logit link was used for statistical analyses. This statistical package relies on the proportional odds model for ordinal logistic regression. Ordinal groupings for YGTSS and CY-BOCS ratings were used as the dependent variable in the analyses. For a priori hypothesis testing, YGTSS, CY-BOCS, and IQ scores or ADHD diagnosis at time 1 were entered as the independent variables. Each of these independent variables was then entered into individual ordinal logistic regression models. Additionally, for each ordinal logistic regression model, age at time 1 and interval between time 1 and time 2 were entered as additional covariates. Using a Bonferroni correction, the threshold for statistical significance was set at P<.01 to account for our 4 a priori hypotheses. All P values were 2 tailed.

The 46 subjects were first interviewed at a mean ± SD age of 11.4 ± 1.6 years (range, 7.5-13.9 years). Demographic characteristics of subjects at time 1 are represented in the Table. At time 2, the patients with TS were at a mean ± SD age of 19.0 ± 1.8 years (range, 16.0-22.8 years). The mean ± SD duration between the initial and follow-up interviews was 7.6 ± 1.9 years (range, 3.8-12.8 years).

At time 2, when the patients with TS were 16 to 23 years of age, tic symptoms for the majority of patients were minimal or absent. On average, the mean ± SD total tic score of the YGTSS at time 2 was 10.0 ± 10.3 (median, 7.5; actual range, 0-39, with a possible range of 0-50). Fifteen patients (33%) reported being entirely tic free during the week before the follow-up interview, and only 10 patients (22%) were judged to have a moderate or marked level of tic severity based on their interview data (YGTSS score, ≥20 but <40). At time 1, all 46 subjects had tics of at least moderate severity (YGTSS score, ≥20). Figure 1 demonstrates a box plot comparing tic severity between time 1 and time 2 in our study sample.

Current status of ocd symptoms

Nineteen subjects with TS reported at some point experiencing at least mild lifetime OCD symptoms (worst-ever, CY-BOCS score, ≥10). The mean ± SD OCD severity score at follow-up was 10.8 ± 9.2 (median, 13; actual range, 0-34, with a possible range of 0-40) compared with 4.1 ± 4.2 (median, 2; actual range, 0-12) at baseline in childhood ( Figure 1).

The mean ± SD worst-ever tic severity score was 31.6 ± 7.7 (range, 15-48) at a mean ± SD age of 10.6 ± 2.6 years (range, 6-19 years). Contrary to previous reports, the level of worst-ever tic severity was not significantly associated with the patient's age during the worst-ever period (Pearson correlation coefficient, r = 0.008; P = .96).

In the 19 subjects who had a lifetime history of OCD symptoms, the mean ± SD age at worst-ever OCD symptoms was 12.5 ± 3.9 (range, 7-22). Figure 2 depicts a box plot comparing age at worst-ever tic and OCD symptoms within our study sample. The mean ± SD worst-ever OCD severity score reported at follow-up was 23.3 ± 6.6 (range, 13-34).

At the follow-up interview, 10 subjects had a lifetime history of ADHD symptoms. One subject had a history of ADHD symptoms but was clinically asymptomatic by the time 1 interview. Fifteen subjects (33%) had experienced a lifetime major depressive episode by the time 2 follow-up interview. Ten experienced their first depressive episode in the interval between the initial interview and the follow-up interview. Only 1 subject currently had depression. Two cases (4.3%) of bipolar disorder and 1 case of schizophrenia emerged at the follow-up interview.

At time 2, 6 subjects (13%) were using antipsychotics or α ₂-agonists (guanfacine hydrochloride or clonidine hydrochloride) (medication to treat tics), compared with 23 subjects (50%) at time 1. Five subjects (11%) were taking antipsychotics at follow-up (4 atypical antipsychotics, 1 typical) compared with 10 subjects (22%) at time 1 (9 typical antipsychotics, 1 atypical). Four subjects at both time 1 and time 2 were using selective serotonin reuptake inhibitors (fluvoxetine, sertraline hydrochloride, or clomipramine hydrochloride), although only 1 subject was taking a selective serotonin reuptake inhibitor at both times.

Consistent with 1 of our a priori hypotheses, increased tic severity at time 1 was associated with increased tic severity at time 2 (odds ratio [OR], 1.11 [95% confidence interval (CI), 1.03-1.20]; P = .004; Nagelerke R ² = 0.19). Therefore, for every 10-point increase in the YGTSS tic severity rating in childhood, subjects were 2.8-fold more likely to have moderate or severe tics in early adulthood. In other words, a child who had marked tics (YGTSS score, ≥20) was 2.8-fold more likely to have marked to severe tics in adulthood compared with a child who had tics of only modest severity (YGTSS score, ≥10 but <20). Worst-ever ticseverity measured at time 1 was not associated with tic severity at time 2 (OR, 1.05 [95% CI, 0.96-1.15]; P = .32). An ADHD diagnosis at time 1 (OR, 0.52 [95% CI, 0.14-1.95]; P = .33) was also not associated with follow-up tic severity.

In contrast, OCD symptom severity at time 1 (OR, 1.04 [95% CI, 0.86-1.25]; P = .70) was not associated with future OCD severity. However, higher IQ score measured at time 1 (OR, 1.11 [95% CI, 1.04-1.19]; P = .001; R ² = 0.46) was significantly associated with increased future OCD symptom severity. For every 10-point increase in childhood IQ, subjects were 2.8-fold more likely to express OCD symptoms at follow-up. Thus, the overall risk of developing clinically significant OCD symptoms (Y-BOCS score, ≥10) by early adulthood was 8-fold higher in a child with an IQ of 120 compared with a child with an IQ of 100.

This study is, to our knowledge, the first prospective longitudinal study of patients with TS that assessed both tic and OCD symptoms systematically at both initial evaluation and follow-up in early adulthood. On average, subjects in the cohort experienced their worst-ever tics at 10 to 11 years of age, and most experienced a marked attenuation of tic severity during adolescence. Slightly less than one quarter (22%) continued to experience mild or greater tic symptoms (YGTSS scores, ≥10) at follow-up, while nearly one third were in complete remission of tic symptoms at follow-up. The only childhood clinical measure significantly associated with increased tic severity at follow-up was increased tic severity at the time of baseline assessment during childhood (<14 years). This finding stands in contrast to those of previous studies, which did not detect an association of childhood tic severity with the severity of tics later in life.

The time when OCD symptoms were at their worst was approximately 2 years later than when tic symptoms were at their worst. The majority of individuals who had OCD symptoms at follow-up reported the onset of their OCD symptoms in late childhood or early adolescence, after the time of their initial evaluation. Increased childhood IQ was strongly associated with the future development of OCD symptoms in children with TS. This result is consistent with previous studies in the general population that have associated increased childhood IQ with the development of OCD in adulthood.

This study has several limitations. It reports findings in a clinically referred population of children with TS whose overall illness severity and rates of comorbid illnesses are likely to be greater than in children who have TS in the general population. Furthermore, approximately one quarter of eligible subjects did not participate in the follow-up evaluation. Although participating and nonparticipating subjects did not differ significantly in any demographic or clinical characteristics at the time of initial evaluation, we cannot exclude the possibility that self-selection bias affected our findings at follow-up. In addition, because at baseline we excluded children with an IQ lower than 80, our finding that higher IQ is associated with worse future OCD symptoms in patients with TS cannot be interpreted as indicating that that those with IQs lower than 80 are not at risk of developing OCD.

Despite these limitations, we can draw 4 clinical conclusions from the findings in this study. First, tics typically diminish in severity during adolescence, even for those children who have relatively severe tic symptoms. This is welcome information for parents seeking an evaluation and treatment for TS and consistent with previous reports. Given that tic symptoms are likely to decrease spontaneously during adolescence, support and tolerance from family, teachers, peers, and health care professionals may either reduce or eliminate the need for exposure to medications. Second, the severity of tics in late childhood was associated, though only modestly so, with future tic severity in late adolescence and early adulthood. Additional work is needed to identify these high-risk individuals. Genetic studies and performance on focused neuropsychological testing as well as magnetic resonance imaging volumetric measurements may hold promise. The predictive value of perinatal risk factors also needs to be evaluated prospectively. Third, the presence of childhood ADHD symptoms was not associated with the presence or severity of adulthood tic or OCD symptoms. Fourth, OCD symptoms on average reached their peak severity 2 years later than tics. Thus, educating patients and their parents about the possibility of developing clinically significant OCD symptoms at a point later in childhood and adolescence, even if OCD symptoms are not evident at the time of initial evaluation, may be important. This may be especially important for bright children who have tics because IQ in childhood in this sample and other samples has been most predictive of increased severity of OCD symptoms in later adolescence, regardless of OCD symptoms in childhood. Periodic monitoring for OCD symptoms after the initial evaluation by experts in tic disorders and OCD may be warranted, given the importance that OCD symptoms have in contributing to later psychosocial functioning.

Correspondence: James F. Leckman, MD, Child Study Center, Yale University School of Medicine, PO Box 207900, New Haven, CT 06520-7900 ( james.leckman@yale.edu).

Accepted for Publication: June 24, 2005.

Author Contributions: Dr Zhang was the statistical expert for this study. He can be reached at Department of Epidemiology and Public Health, Yale University School of Medicine, 60 College St, New Haven, CT 06520-8034 ( heping.zhang@yale.edu).

Funding/Support: This study was supported in part by grants MH49351 (Dr Leckman), MH01232 (Dr Peterson), MH59139 (Dr Peterson), MH30929, and RR06022 from the National Institute of Mental Health, Rockville, Md; a grant from the Tourette Syndrome Association, New York, NY; the Suzanne Crosby Murphy Endowment at Columbia University, New York; the Smart Family Foundation, Wilton, Conn; Jay and Jean Kaiser; Eric Brooks; and the Chasanoff Family at the Yale University Child Study Center as well as gifts from anonymous donors.

Acknowledgement: We thank our many collaborators at Yale including Robert King, MD, Diane Findley, PhD, Lily Katsovich, MS, and Heidi Grantz, MSW, for their encouragement and substantial contributions in following up these families and participating in the initial assessment of these individuals. We thank Robert Schultz, PhD, for providing IQ measurements in the children of this sample. We thank Hanna Stevens, MD, PhD, and Andres Martin, MD, MPH, for their contributions toward the final manuscript of this article.

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Adulthood Outcome of Tic and Obsessive-Compulsive Symptom Severity in Children With Tourette Syndrome

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Background Tourette syndrome (TS) is a childhood-onset neuropsychiatric disorder that is characterized by both motor and phonic tics. One half to two thirds of children with TS experience a reduction or complete resolution of tic symptoms during adolescence. At least one third of adults with...

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Information for Education Professionals | Tourette Syndrome | NCBDDD | CDC

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Information for Education Professionals | Tourette Syndrome | NCBDDD | CDC

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Centers for Disease Control and Prevention

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Tourette Syndrome (TS) can affect a child's experience at school. For example, some tics make it difficult to read or write. A child might also get distracted by tics or by trying not to have a tic. In addition, because many people do not understand TS, children are sometimes teased, bullied, or rejected by other kids. However, with some planning, children with TS can have a positive, successful school experience.

Generally, children with TS have the same intelligence range as other children. But problems with tics, often combined with attention deficits and other learning difficulties, can mean that children with TS will need special education assistance. Examples of this type of assistance might include different seating arrangements, additional time for testing or computer accommodations for children who have problems with writing.

Educators and other school personnel can support children with TS and their families by learning more about the condition. Information and education about specific strategies that can be used in school are available to help students with TS reach their full potential.

Education and Training

The Tourette Association of America provides information and education that is intended for educators and other school personnel. Following are links to some of this information:

The Tourette Association also provides live education programs for teachers and other education professionals.

The programs provide information on TS and related conditions, on accommodations and functional behavioral assessment for students with TS, and on writing a positive behavior support plan or an individualized education program (IEP) for a student with TS and related conditions.
Access other free materials
Prevent Bullying

Children with TS and related co-occurring conditions (such as attention-deficit/hyperactivity disorder (ADHD)) are often victims of bullying by their peers. These children might be more of a target because they often stand out from other children, and their tics, obsessions, compulsions, or hyperactivity might single them out from their peers.

Children with tics are more likely to be bullied than children without tics, and those with more severe tics are at even greater risk for being bullied. Among children with tics, bullying has been associated with loneliness and anxiety.

Bullying can threaten the safety of students and disrupt their ability to learn. School staff can help by addressing bullying, or preventing it before it starts.
More information about bullying for schools, educators, parents, kids, and teens "
References

1. Great Ormond Street Hospital for Children NHS Trust [Internet]. London; February 2007 [cited 2010 June 23]. Tourette Syndrome and bullying at school.

2. Storch, EA, Chase, RM, Keeley, M, Goodman, WK, Murray, M, Geffken, GR. Peer victimization in youth with Tourette's Syndrome and chronic tic disorder: Relations with tic severity and internalizing symptoms. Journal of Psychopathology and Behavioral Assessment. 2007; 29(4): 211-9.

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Information for Education Professionals | TS | NCBDDD | CDC

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Tourette Syndrome (TS) can affect a child's experience at school. For example, some tics make it difficult to read or write. A child might also get distracted by tics or by trying not to have a tic. In addition, because many people do not understand TS, children are sometimes teased, bullied, or rejected by other kids.

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TOURETTE CDC PARTNERSHIP CURRENT YEAR PROGRAMS

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TOURETTE CDC PARTNERSHIP CURRENT YEAR PROGRAMS

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CDC and the Tourette Association of America

The Tourette Association of America is celebrating its 12th year of partnership with the US Centers for Disease Control and Prevention (CDC) to provide education and awareness on Tourette to various professional audiences, as well as families, individuals, and the general public. The program, recently renamed, "Tourette Health and Education Program" (THEP) works to expand the ways in which information and education on Tourette is shared.

Through THEP, the Tourette Association develops and presents informational materials for various medical and education professionals who are likely to encounter TS and Tic Disorders. Reaching physicians and other healthcare professionals and educating them about accurate diagnoses and effective treatments can lead to a more streamlined process to receiving care, and ultimately improve lives. THEP also educates teachers and other school personnel to facilitate earlier identification of TS and appropriate educational supports so that students can succeed in school. Finally, we work to educate families about the various issues of living with TS to help them to manage TS and arm them with the knowledge and tools they need when seeking care or support services.

This is an exciting time for the Tourette Association and for THEP as we continue to offer programming to support the TS Community with innovative education and resources. Our outreach platforms include face-to-face education workshops, content development, and monthly webinars and Twitter chats that reach people regardless of where they live.

To learn more about the Tourette Health and Education Program, please contact Program Director Chelsea Tollner or at 1-888-4-TOURET.

Interested in a No-Cost Presentation to Learn about Tourette?
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An Overview of our Partnership with the CDC - Tourette Association of America

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The Tourette Association of America is celebrating its 12th year of partnership with the US Centers for Disease Control and Prevention (CDC) to provide education and awareness on Tourette to various professional audiences, as well as families, individuals, and the general public.

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The Tourette Association's National Awareness Walk/5K was organized to raise awareness and funds for the Tourette Association of America. When you register for the National... READ MORE

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Classroom Strategies and Techniques for Students with Tourette Syndrome

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Classroom Strategies and Techniques for Students with Tourette Syndrome

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Provide a separate test location with time limits waived or extended.

Educate other students who come into contact with a classmate with TS. Contact your local chapter to see if a Youth Ambassador is available to provide a peer in-service. If not, a video of a Youth Ambassador presenting to a class is available on the Association website.

Provide a safe place- Some students benefit from a specific place (as well as a back-up in case this is not available), where a student may release symptoms.

Give breaks out of the classroom, as it can be helpful to have a change in settings; e.g., the bathroom, the drinking fountain, a real or made up errand.

Brainstorm possible solutions with the student- if tics are socially inappropriate (spitting, swearing, touching people inappropriately), and unless the child is very young, help the student think of different ways that they can express his or her tic (e.g., a student may suggest or agree to spit into a tissue as a solution).

In certain instances, students may be receiving specific clinical therapies outside of the school such as Comprehensive Behavioral Intervention for Tics (CBIT) or other types of therapies. Such treatments may require very different classroom approaches. In these cases, the child, family, or practitioner would engage the teacher and school directly.

For more information, visit:
Tics in the Classroom: An Educator's Guide

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Managing TS in a classroom - Tourette Association of America

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Provide a separate test location with time limits waived or extended. Educate other students who come into contact with a classmate with TS. Contact your local chapter to see if a Youth Ambassador is available to provide a peer in-service. If not, a video of a Youth Ambassador presenting to a class is available on the Association website.

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I Have Tourette's but Tourette's Doesn't Have Me

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I Have Tourette's but Tourette's Doesn't Have Me

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https://www.youtube.com/watch?v=aDipNAuZuZI

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This book not only gives an in-depth description of TS, but also explains how multiple successful individuals were able to overcome common difficulties associated with Tourette's.

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This book describes a teenager's experience with social anxiety disorder and gives tips on managing daily life with SAD.
I want to read this book to give me an idea of how teenagers who are considered different by society cope with daily life. Are there any similarities between the difficulties that teens with TS and with SAD face? How do other teens react to their peers with disorders? What strategies to increase awareness have been most effective?

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How Teens Become Engaged in Youth Development Programs: The Process of Motivational Change in a Civic Activism Organization - Applied Developmental Science - Volume 10, Issue 3

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How Teens Become Engaged in Youth Development Programs: The Process of Motivational Change in a Civic Activism Organization - Applied Developmental Science - Volume 10, Issue 3

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Living with Tourette's: finding the flip side | Michael Chichioco | TEDxYouth@SHC - YouTube

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Living with Tourette's: finding the flip side | Michael Chichioco | TEDxYouth@SHC - YouTube

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Living with Tourette's: finding the flip side | Michael Chichioco | TEDxYouth@SHC

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A junior in high school, Michael Chichioco tells an inspiring and deeply emotional story about living with Tourette's syndrome . Michael Chichioco is a junior at Saint Ignatius College Preparatory in San Francisco, California.

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Treatments | Tourette Syndrome | NCBDDD | CDC

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Treatments | Tourette Syndrome | NCBDDD | CDC

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Centers for Disease Control and Prevention

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Although there is no cure for Tourette Syndrome (TS), there are treatments to help manage the tics caused by TS. Many people with TS have tics that do not get in the way of their living their daily life and, therefore, do not need any treatment. However, medication and behavioral treatments are available if tics cause pain or injury; interfere with school, work, or social life; or cause stress. A promising new behavioral treatment is the Comprehensive Behavioral Intervention for Tics (CBIT)

Educating the community (for example, peers, educators, and coworkers) about TS can increase understanding of the symptoms, reduce teasing, and decrease stress for people living with TS. People with TS cannot help having tics, and are not being disruptive on purpose. When others understand these facts, people with TS might receive more support, which might, in turn, help lessen some tic symptoms.

It is common for people with TS to have co-occurring conditions, particularly attention-deficit/hyperactivity disorder (ADHD) and obsessive-compulsive disorder (OCD). People with additional conditions will require different treatments based on the symptoms. Sometimes treating these other conditions can help reduce tics. To develop the best treatment plan, people with tics, parents, and health care providers should work closely with one another, and with everyone involved in treatment and support-which may include teachers, childcare providers, coaches, therapists, and other family members. Taking advantage of all the resources available will help guide success.

Medications

Medications can be used to reduce severe or disruptive tics that might have led to problems in the past with family and friends, other students, or coworkers. Medications also can be used to reduce symptoms of related conditions, such as ADHD or OCD.

Medications do not eliminate tics completely. However, they can help some people with TS in their everyday life. There is no one medication that is best for all people. Most medications prescribed for TS have not been approved by the U.S. Food and Drug Administration (FDA) for treating tics.

Medications affect each person differently. One person might do well with one medication, but not another. When deciding the best treatment, a doctor might try different medications and doses, and it may take time to find the treatment plan that works best. The doctor will want to find the medication and dose that have the best results and the fewest side effects. Doctors often start with small doses and slowly increase as needed.

As with all medications, those used to treat tics can have side effects. Side effects can include weight gain, stiff muscles, tiredness, restlessness, and social withdrawal. The side effects need to be considered carefully when deciding whether or not to use any medication to treat tics. In some cases, the side effects can be worse than the tics.

Even though medications often are used to treat the symptoms of TS, they might not be helpful for everyone. Two common reasons for not using medications to treat TS are unpleasant side effects and failure of the medications to work as well as expected.
Learn more about medications "
Behavioral Therapy

Behavioral therapy is a treatment that teaches people with TS ways to manage their tics. Behavioral therapy is not a cure for tics. However, it can help reduce the number of tics, the severity of tics, the impact of tics, or a combination of all of these. It is important to understand that even though behavioral therapies might help reduce the severity of tics, this does not mean that tics are just psychological or that anyone with tics should be able to control them.

Habit Reversal

Habit reversal is one of the most studied behavioral interventions for people with tics. It has two main parts: awareness training and competing response training. In the awareness training part, people identify each tic out loud. In the competing response part, people learn to do a new behavior that cannot happen at the same time as the tic. For example, if the person with TS has a tic that involves head rubbing, a new behavior might be for that person to place his or her hands on his or her knees, or to cross his or her arms so that the head rubbing cannot take place.

Comprehensive Behavioral Intervention for Tics (CBIT)

CBIT is an evidence-based type of behavioral therapy for TS and chronic tic disorders. CBIT includes habit reversal in addition to other strategies, including education about tics and relaxation techniques. CBIT has been shown to be effective at reducing tic symptoms and tic-related impairment among children and adults.

In CBIT, a therapist will work with a child (and his or her parents) or an adult with TS to better understand the types of tics the person is having and to understand the situations in which the tics are at their worst. Changes to the surroundings may be made, if possible, and the person with TS will also learn to do a new behavior instead of the tic (habit reversal). For example, if a child with TS often has a certain tic during math class, the math teacher can be educated about TS, and perhaps the child's seat can be changed so that the tics are not as visible. In addition, the child also can work with a psychologist to learn habit reversal techniques. This helps to decrease how often the tic occurs by doing a new behavior (like putting his or her hands on his or her knees when an urge to perform the tic happens). CBIT skills can be learned with practice, with the help of an experienced therapist, and with the support and encouragement of those close to the person with TS.

In recent years, more health professionals have recognized that behavioral therapy can be very effective in managing the symptoms of TS. Unfortunately, very few clinicians have been trained in these types of treatments specifically for TS and tic disorders. The CDC and The Tourette Association of America have been working to educate more health professionals in this approach to managing TS symptoms. Learn more about CBIT.

Parent Training

Children with TS and related conditions and their families also can benefit from parent training, which has been shown to be successful among children with both TS and other disruptive behaviors. Parent training also has been shown to be helpful for children with ADHD. Parent training helps parents better understand their child's behavioral issues and learn parenting skills specific to these problems. The training might include learning about the effective use of positive reinforcement and discipline that is effective with their particular child.

For More Information

Additional information on treatment for TS can be found at the following links:
Pediatric Psychopharmacology: Psychopharmacology of Tic Disorders National Institutes of Health Fact Sheet Tourette Association of America
References

1. Cook CR, Blacher J. Evidence-based psychosocial treatments for tic disorders. Clin Psychol: Science and Practice. 2007;14(3):252-67.

2. Piacentini J, Woods DW, Scahill L, Wilhelm S, Peterson AL, Chang S. Behavior therapy for children with Tourette disorder: a randomized controlled trial. JAMA. 2010;303(19):1929-37.

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Treatments | Tourette Syndrome | NCBDDD | CDC

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Although there is no cure for Tourette Syndrome (TS), there are treatments to help manage the tics caused by TS. Many people with TS have tics that do not get in the way of their living their daily life and, therefore, do not need any treatment.

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What is Tourette syndrome?

Tourette syndrome (TS) is a neurological disorder characterized by repetitive, stereotyped, involuntary movements and vocalizations called tics. The disorder is named for Dr. Georges Gilles de la Tourette, the pioneering French neurologist who in 1885 first described the condition in an 86-year-old French noblewoman.

The early symptoms of TS are typically noticed first in childhood, with the average onset between the ages of 3 and 9 years. TS occurs in people from all ethnic groups; males are affected about three to four times more often than females. It is estimated that 200,000 Americans have the most severe form of TS, and as many as one in 100 exhibit milder and less complex symptoms such as chronic motor or vocal tics. Although TS can be a chronic condition with symptoms lasting a lifetime, most people with the condition experience their worst tic symptoms in their early teens, with improvement occurring in the late teens and continuing into adulthood.

What are the symptoms?

Tics are classified as either simple or complex. Simple motor tics are sudden, brief, repetitive movements that involve a limited number of muscle groups. Some of the more common simple tics include eye blinking and other eye movements, facial grimacing, shoulder shrugging, and head or shoulder jerking. Simple vocalizations might include repetitive throat-clearing, sniffing, or grunting sounds. Complex tics are distinct, coordinated patterns of movements involving several muscle groups. Complex motor tics might include facial grimacing combined with a head twist and a shoulder shrug. Other complex motor tics may actually appear purposeful, including sniffing or touching objects, hopping, jumping, bending, or twisting. Simple vocal tics may include throat-clearing, sniffing/snorting, grunting, or barking. More complex vocal tics include words or phrases. Perhaps the most dramatic and disabling tics include motor movements that result in self-harm such as punching oneself in the face or vocal tics including coprolalia (uttering socially inappropriate words such as swearing) or echolalia (repeating the words or phrases of others). However, coprolalia is only present in a small number (10 to 15 percent) of individuals with TS. Some tics are preceded by an urge or sensation in the affected muscle group, commonly called a premonitory urge. Some with TS will describe a need to complete a tic in a certain way or a certain number of times in order to relieve the urge or decrease the sensation.

Tics are often worse with excitement or anxiety and better during calm, focused activities. Certain physical experiences can trigger or worsen tics, for example tight collars may trigger neck tics, or hearing another person sniff or throat-clear may trigger similar sounds. Tics do not go away during sleep but are often significantly diminished.

What is the course of TS?

Tics come and go over time, varying in type, frequency, location, and severity. The first symptoms usually occur in the head and neck area and may progress to include muscles of the trunk and extremities. Motor tics generally precede the development of vocal tics and simple tics often precede complex tics. Most patients experience peak tic severity before the mid-teen years with improvement for the majority of patients in the late teen years and early adulthood. Approximately 10-15 percent of those affected have a progressive or disabling course that lasts into adulthood.

Can people with TS control their tics?

Although the symptoms of TS are involuntary, some people can sometimes suppress, camouflage, or otherwise manage their tics in an effort to minimize their impact on functioning. However, people with TS often report a substantial buildup in tension when suppressing their tics to the point where they feel that the tic must be expressed (against their will). Tics in response to an environmental trigger can appear to be voluntary or purposeful but are not.

What causes TS?

Although the cause of TS is unknown, current research points to abnormalities in certain brain regions (including the basal ganglia, frontal lobes, and cortex), the circuits that interconnect these regions, and the neurotransmitters (dopamine, serotonin, and norepinephrine) responsible for communication among nerve cells. Given the often complex presentation of TS, the cause of the disorder is likely to be equally complex.

What disorders are associated with TS?

Many individuals with TS experience additional neurobehavioral problems that often cause more impairment than the tics themselves. These include inattention, hyperactivity and impulsivity (attention deficit hyperactivity disorder-ADHD); problems with reading, writing, and arithmetic; and obsessive-compulsive symptoms such as intrusive thoughts/worries and repetitive behaviors. For example, worries about dirt and germs may be associated with repetitive hand-washing, and concerns about bad things happening may be associated with ritualistic behaviors such as counting, repeating, or ordering and arranging. People with TS have also reported problems with depression or anxiety disorders, as well as other difficulties with living, that may or may not be directly related to TS. In addition, although most individuals with TS experience a significant decline in motor and vocal tics in late adolescence and early adulthood, the associated neurobehavioral conditions may persist. Given the range of potential complications, people with TS are best served by receiving medical care that provides a comprehensive treatment plan.

How is TS diagnosed?

TS is a diagnosis that doctors make after verifying that the patient has had both motor and vocal tics for at least 1 year. The existence of other neurological or psychiatric conditions can also help doctors arrive at a diagnosis. Common tics are not often misdiagnosed by knowledgeable clinicians. However, atypical symptoms or atypical presentations (for example, onset of symptoms in adulthood) may require specific specialty expertise for diagnosis. There are no blood, laboratory, or imaging tests needed for diagnosis. In rare cases, neuroimaging studies, such as magnetic resonance imaging (MRI) or computerized tomography (CT), electroencephalogram (EEG) studies, or certain blood tests may be used to rule out other conditions that might be confused with TS when the history or clinical examination is atypical.

It is not uncommon for patients to obtain a formal diagnosis of TS only after symptoms have been present for some time. The reasons for this are many. For families and physicians unfamiliar with TS, mild and even moderate tic symptoms may be considered inconsequential, part of a developmental phase, or the result of another condition. For example, parents may think that eye blinking is related to vision problems or that sniffing is related to seasonal allergies. Many patients are self-diagnosed after they, their parents, other relatives, or friends read or hear about TS from others.

How is TS treated?

Because tic symptoms often do not cause impairment, the majority of people with TS require no medication for tic suppression. However, effective medications are available for those whose symptoms interfere with functioning. Neuroleptics (drugs that may be used to treat psychotic and non-psychotic disorders) are the most consistently useful medications for tic suppression; a number are available but some are more effective than others (for example, haloperidol and pimozide).

Unfortunately, there is no one medication that is helpful to all people with TS, nor does any medication completely eliminate symptoms. In addition, all medications have side effects. Many neuroleptic side effects can be managed by initiating treatment slowly and reducing the dose when side effects occur. The most common side effects of neuroleptics include sedation, weight gain, and cognitive dulling. Neurological side effects such as tremor, dystonic reactions (twisting movements or postures), parkinsonian-like symptoms, and other dyskinetic (involuntary) movements are less common and are readily managed with dose reduction.

Discontinuing neuroleptics after long-term use must be done slowly to avoid rebound increases in tics and withdrawal dyskinesias. One form of dyskinesia called tardive dyskinesia is a movement disorder distinct from TS that may result from the chronic use of neuroleptics. The risk of this side effect can be reduced by using lower doses of neuroleptics for shorter periods of time.

Other medications may also be useful for reducing tic severity, but most have not been as extensively studied or shown to be as consistently useful as neuroleptics. Additional medications with demonstrated efficacy include alpha-adrenergic agonists such as clonidine and guanfacine. These medications are used primarily for hypertension but are also used in the treatment of tics. The most common side effect from these medications that precludes their use is sedation. However, given the lower side effect risk associated with these medications, they are often used as first-line agents before proceeding to treatment with neuroleptics.

Effective medications are also available to treat some of the associated neurobehavioral disorders that can occur in patients with TS. Recent research shows that stimulant medications such as methylphenidate and dextroamphetamine can lessen ADHD symptoms in people with TS without causing tics to become more severe. However, the product labeling for stimulants currently contraindicates the use of these drugs in children with tics/TS and those with a family history of tics. Scientists hope that future studies will include a thorough discussion of the risks and benefits of stimulants in those with TS or a family history of TS and will clarify this issue. For obsessive-compulsive symptoms that significantly disrupt daily functioning, the serotonin reuptake inhibitors (clomipramine, fluoxetine, fluvoxamine, paroxetine, and sertraline) have been proven effective in some patients.

Behavioral treatments such as awareness training and competing response training can also be used to reduce tics. A recent NIH-funded, multi-center randomized control trial called Cognitive Behavioral Intervention for Tics, or CBIT, showed that training to voluntarily move in response to a premonitory urge can reduce tic symptoms. Other behavioral therapies, such as biofeedback or supportive therapy, have not been shown to reduce tic symptoms. However, supportive therapy can help a person with TS better cope with the disorder and deal with the secondary social and emotional problems that sometimes occur.

Is TS inherited?

Evidence from twin and family studies suggests that TS is an inherited disorder. Although early family studies suggested an autosomal dominant mode of inheritance (an autosomal dominant disorder is one in which only one copy of the defective gene, inherited from one parent, is necessary to produce the disorder), more recent studies suggest that the pattern of inheritance is much more complex. Although there may be a few genes with substantial effects, it is also possible that many genes with smaller effects and environmental factors may play a role in the development of TS.

Genetic studies also suggest that some forms of ADHD and OCD are genetically related to TS, but there is less evidence for a genetic relationship between TS and other neurobehavioral problems that commonly co-occur with TS. It is important for families to understand that genetic predisposition may not necessarily result in full-blown TS; instead, it may express itself as a milder tic disorder or as obsessive-compulsive behaviors. It is also possible that the gene-carrying offspring will not develop any TS symptoms.

The gender of the person also plays an important role in TS gene expression. At-risk males are more likely to have tics and at-risk females are more likely to have obsessive-compulsive symptoms.

Genetic counseling of individuals with TS should include a full review of all potentially hereditary conditions in the family.

What is the prognosis?

Although there is no cure for TS, the condition in many individuals improves in the late teens and early 20s. As a result, some may actually become symptom-free or no longer need medication for tic suppression. Although the disorder is generally lifelong and chronic, it is not a degenerative condition. Individuals with TS have a normal life expectancy. TS does not impair intelligence. Although tic symptoms tend to decrease with age, it is possible that neurobehavioral disorders such as ADHD, OCD, depression, generalized anxiety, panic attacks, and mood swings can persist and cause impairment in adult life.

What is the best educational setting for children with TS?

Although students with TS 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 TS 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 TS.

What research is being done?

Within the Federal government, the National Institute of Neurological Disorders and Stroke (NINDS), a part of the National Institutes of Health (NIH), is responsible for supporting and conducting research on the brain and nervous system. The NINDS and other NIH components, such as the National Institute of Mental Health, the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the National Institute on Drug Abuse, and the National Institute on Deafness and Other Communication Disorders, support research of relevance to TS, either at NIH laboratories or through grants to major research institutions across the country. Another component of the Department of Health and Human Services, the Centers for Disease Control and Prevention, funds professional education programs as well as TS research.

Knowledge about TS comes from studies across a number of medical and scientific disciplines, including genetics, neuroimaging, neuropathology, clinical trials (medication and non-medication), epidemiology, neurophysiology, neuroimmunology, and descriptive/diagnostic clinical science.

Genetic studies. Currently, NIH-funded investigators are conducting a variety of large-scale genetic studies. Rapid advances in the technology of gene discovery will allow for genome-wide screening approaches in TS, and finding a gene or genes for TS would be a major step toward understanding genetic risk factors. In addition, understanding the genetics of TS genes may strengthen clinical diagnosis, improve genetic counseling, lead to the clarification of pathophysiology, and provide clues for more effective therapies.

Neuroimaging studies. Advances in imaging technology and an increase in trained investigators have led to an increasing use of novel and powerful techniques to identify brain regions, circuitry, and neurochemical factors important in TS and related conditions.

Neuropathology. There has been an increase in the number and quality of donated postmortem brains from TS patients available for research purposes. This increase, coupled with advances in neuropathological techniques, has led to initial findings with implications for neuroimaging studies and animal models of TS.

Clinical trials. A number of clinical trials in TS have recently been completed or are currently underway. These include studies of stimulant treatment of ADHD in TS and behavioral treatments for reducing tic severity in children and adults. Smaller trials of novel approaches to treatment such as dopamine agonists and glutamatergic medications also show promise.

Epidemiology and clinical science. Careful epidemiological studies now estimate the prevalence of TS to be substantially higher than previously thought with a wider range of clinical severity. Furthermore, clinical studies are providing new findings regarding TS and co-existing conditions. These include subtyping studies of TS and OCD, an examination of the link between ADHD and learning problems in children with TS, a new appreciation of sensory tics, and the role of co-existing disorders in rage attacks. One of the most important and controversial areas of TS science involves the relationship between TS and autoimmune brain injury associated with group A beta-hemolytic streptococcal infections or other infectious processes. There are a number of epidemiological and clinical investigations currently underway in this intriguing area.

Where can I get more information?

For more information on neurological disorders or research programs funded by the National Institute of Neurological Disorders and Stroke, contact the Institute's Brain Resources and Information Network (BRAIN) at:

BRAIN
P.O. Box 5801
Bethesda, MD 20824
800-352-9424
http://www.ninds.nih.gov

Information also is available from the following organizations:

Child Neurology Foundation (link is external)
201 Chicago Avenue, Suite 200
Minneapolis, MN 55415
info@childneurologyfoundation.org (link sends e-mail) (link sends e-mail)
Tel: 612-928-6325

Tourette Association of America
42-40 Bell Boulevard
Suite 205
Bayside, NY 11361-2820
ts@tsa-usa.org
https://www.tourette.org/
Tel: 718-224-2999; 888-4-TOURET (486-8738)
Fax: 718-279-9596

"Tourette Syndrome Fact Sheet", NINDS, Publication date January 2012.

NIH Publication No. 12-2163

Back to Tourette Syndrome Information Page
See a list of all NINDS disorders Publicaciones en Español Síndrome de Tourette
Prepared by:
Office of Communications and Public Liaison
National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892

NINDS health-related material is provided for information purposes only and does not necessarily represent endorsement by or an official position of the National Institute of Neurological Disorders and Stroke or any other Federal agency. Advice on the treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient's medical history.

All NINDS-prepared information is in the public domain and may be freely copied. Credit to the NINDS or the NIH is appreciated.

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National Institute of Neurological Disorders and Stroke

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Tourette syndrome (TS) is a neurological disorder characterized by repetitive, stereotyped, involuntary movements and vocalizations called tics. The disorder is named for Dr. Georges Gilles de la Tourette, the pioneering French neurologist who in 1885 first described the condition in an 86-year-old French noblewoman.

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Anatomy:
The basal ganglia form a set of interconnected nuclei in the forebrain. Overall the basal ganglia receive a large amount of input from cerebral cortex, and after processing, send it back to cerebral cortex via thalamus. This major pathway led to the creation of the popular concept of cortico-basal ganglia-cortical loops. Inside the basal ganglia there are too many connections and pathways to cover in this paragraph. Just briefly: The cortex sends excitatory input to the striatum. The principle neuron of the striatum is the famous medium spiny neuron, which sends its inhibitory output on to the globus pallidus. The globus pallidus can also be excited by cortical activity, namely by a pathway that travels through the subthalamic nucleus first. The globus pallidus is really divided into two segments, only one of which sends output (yet again inhibitory!) to the thalamus and on to cortex, thus completing the loop. The larger segment of globus pallidus (GPe) just inhibits the subthalamic nucleus and itself. The functional significance of this connection is still quite mysterious! Similar to the cerebellum the basal ganglia are also implicated in learning, and the system that is thought to be important here is the dopaminergic input received from the Substantia nigra pars compacta. Probably the best known fact regarding the basal ganglia is that a lesion of this dopaminergic pathway causes Parkinson's disease.

Physiology:

Numerous research projects have recorded electrical activity in the basal ganglia. Unfortunately for the experimentalists seeking clear answers, the recorded activity in behaving animals can be related just about to any component of sensory input, motor preparation, and movement execution. One thing is sure however: The medium spiny neurons are active only at a very slow rate, and furthermore the connection to the GP takes more time than most pathways in the brain. In contrast to cerebellum this system seems unsuitable for the fast feedback control of ongoing movement. Neurons in GP in contrast are active at a very high rate. This could be very useful, if both decreases and increases in activity need to be communicated accurately to the thalamus. Since GP neurons are inhibitory in thalamus, a decrease in activity actually would disinhibit the thalamus, and thus activate cortex. Single cell properties of various cell types in the basal ganglia are also quite unique and interesting, and intracellular recordings in brain slices and anesthetized animals have showed how specific features of single neuron properties could be important in the ongoing function of the basal ganglia.

Function:

As is true for the cerebellum, the ultimate answers about the exact function of the basal ganglia in the control of behavior have yet to be established. One very good candidate is called "Action Selection Hypothesis". In this model the basal ganglia would be the arbiter of which of the potential actions that cortex might be planning actually gets executed. This fits together well with the idea that dopamine is a system mediating learning based on reward. This could train the basal ganglia to chose behaviors that have been rewarding in the past. The overall lack of action found in Parkinsons' disease is also easily reconciled with the idea of action selection. The other major symptom, namely movement tremor, however, is not. The presence of movement tremor and other specific motor problems, have led some people to believe that the basal ganglia may play a role in the planning and coordination of specific movement sequences. Thus, the temporal sequencing of movements is another intriguing function of the basal ganglia.

Basal Ganglia Overview Chapter and Review Article Selection:

Albin RL, Young AB, and Penney JB. 1989. The functional anatomy of basal ganglia disorders. Trends.Neurosci. 12:366-375.
Albin RL, Young AB, and Penney JB. 1995. The functional anatomy of disorders of the basal ganglia. [Review] [11 refs]. Trends in Neurosciences 18:63-4.
Alexander GE and Crutcher MD. 1990. Functional architecture of basal ganglia circuits: neural substrates of parallel processing. Trends.Neurosci. 13:266-271.
Beiser DG, Hua SE, and Houk JC. 1997. Network models of the basal ganglia. [Review] [38 refs]. Current Opinion in Neurobiology 7:185-90.
Chesselet MF and Delfs JM. 1996. Basal ganglia and movement disorders: an update. [Review] [50 refs]. Trends in Neurosciences 19:417-22.
Redgrave P, Prescott TJ, and Gurney K. 1999. The basal ganglia: A vertebrate solution to the selection problem? Neuroscience 89:1009-1023.
Schultz W and Dickinson A. 2000. Neuronal coding of prediction errors. Annu.Rev.Neurosci. 23:473-500.
Waelti P, Dickinson A, and Schultz W. 2001. Dopamine responses comply with basic assumptions of formal learning theory. Nature 412:43-48.
Wichmann T and DeLong MR. 1996. Functional and pathophysiological models of the basal ganglia. [Review] [90 refs]. Current Opinion in Neurobiology 6:751-8.

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Anatomy: The basal ganglia form a set of interconnected nuclei in the forebrain. Overall the basal ganglia receive a large amount of input from cerebral cortex, and after processing, send it back to cerebral cortex via thalamus. This major pathway led to the creation of the popular concept of cortico-basal ganglia-cortical loops.

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https://www.youtube.com/watch?v=_jmTlQld2Z8

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Identifying Common Education Difficulties with TS

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Identifying Common Education Difficulties with TS

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Provide a separate test location with time limits waived or extended.

Educate other students who come into contact with a classmate with TS. Contact your local chapter to see if a Youth Ambassador is available to provide a peer in-service. If not, a video of a Youth Ambassador presenting to a class is available on the Association website.

Provide a safe place- Some students benefit from a specific place (as well as a back-up in case this is not available), where a student may release symptoms.

Give breaks out of the classroom, as it can be helpful to have a change in settings; e.g., the bathroom, the drinking fountain, a real or made up errand.

Brainstorm possible solutions with the student- if tics are socially inappropriate (spitting, swearing, touching people inappropriately), and unless the child is very young, help the student think of different ways that they can express his or her tic (e.g., a student may suggest or agree to spit into a tissue as a solution).

In certain instances, students may be receiving specific clinical therapies outside of the school such as Comprehensive Behavioral Intervention for Tics (CBIT) or other types of therapies. Such treatments may require very different classroom approaches. In these cases, the child, family, or practitioner would engage the teacher and school directly.

For more information, visit:
Tics in the Classroom: An Educator's Guide

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Managing TS in a classroom - Tourette Association of America

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Provide a separate test location with time limits waived or extended. Educate other students who come into contact with a classmate with TS. Contact your local chapter to see if a Youth Ambassador is available to provide a peer in-service. If not, a video of a Youth Ambassador presenting to a class is available on the Association website.

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The Yale Global Tic Severity Scale: Initial Testing of a Clinician-Rated Scale of Tic Severity

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The Yale Global Tic Severity Scale: Initial Testing of a Clinician-Rated Scale of Tic Severity

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*Do not have access to this source; need to find information elsewhere*

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The Yale Global Tic Severity Scale: Initial Testing of a Clinician-Rated Scale of Tic Severity

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Despite the overt nature of most motor and phonic tic phenomena, the development of valid and reliable scales to rate tic severity has been an elusive...

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Tourette Syndrome Getting Help at School

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Tourette Syndrome Getting Help at School

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Accommodations & Education Rights

A student with Tourette Syndrome has certain education rights and accommodations, these include a 504 Plan, an Independent Education Plan (IEP), as well as laws advocating for children with special needs such as the Individuals with Disabilities Education Act (IDEA), a special education law, and the Every Student Succeeds Act (ESSA), a general education law. For an IEP, the child must first be determined to be a "student with a disability' as defined in IDEA.

Before developing an effective support plan, there are a few important factors to keep in mind:

Be prepared: The Tourette Association suggests that the education team read the article titled Understanding Behavioral Symptoms in Tourette Syndrome: TS is More than Tics prior to developing a plan. This article provides a brief overview of many of the related difficulties that are common for students with TS. Also see information about Free Appropriate Public Education (FAPE).

Include the Student: The student is an important part of the team and should be included in as much of the planning as possible. If the supports do not make sense or are not considered helpful to the student, then he or she probably will not use them and the plan will not be effective. Additionally, students are more likely to respect a plan that they helped to develop.
Communication is key for the following reasons:

Communication with family members is important for developing a collaborative relationship that is essential to the success of students with TS.

Members of the team need to communicate about the effectiveness of the plan and modify it when necessary. Any factors that might impact the student should be shared among team members. For example, medication changes may result in new or different symptoms and the team should be made aware when these changes occur.

The team should monitor strategies to ensure they do not increase anxiety or other symptoms.

Creativity is essential in identifying strategies that might be most helpful to your student. Each student is unique and may benefit from a strategy you may never have tried, or thought to try, with this or other students. Therefore, it is important to have a discussion with the student regarding what he or she believes might be helpful. Pay close attention to his or her thoughts on why strategies may or may not help because the student's insights can be instrumental when tweaking or developing strategies.

Related:
Educator's Guide for Developing a Plan

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Accommodation and education rights overview and strategies

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A student with Tourette Syndrome has certain education rights and accommodations, these include a 504 Plan, an Independent Education Plan (IEP), as well as laws advocating for children with special needs such as the Individuals with Disabilities Education Act (IDEA), a special education law, and the Every Student Succeeds Act (ESSA), a general education law.