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I have also learned from experience that the greater part of our happiness or misery depends upon our dispositions, and not upon our circumstances. Martha Dandridge Custis Washington, 1731-1802
One family's story of the journey to acceptance of life with Tourette's Syndrome.
Summarizing, you must know how to read and carefully interpret the literature in order to find your own place on the Tourette's spectrum. Persons who have additional diagnoses along with Tourette Syndrome are more likely to come to specialty clinics where the most complex cases are seen; more likely to show up in research studies where those with more comorbid conditions may be over-represented; and more likely to come to support groups as they may have greater needs. This bias may introduce a difference from the broader population of all persons with TS, so that you only seem to hear about the severe end of the spectrum. The additional diagnoses are often the source of difficulties far greater than the tics. However, you will hear many people inaccurately lumping their issues together under the heading of Tourette's Syndrome.
It took us almost a year to move from the panic of "Now what?" to the calm of "So what?" I eventually understood that we aren’t unusual and the older literature doesn’t fit for a lot of persons diagnosed today with Tourette's, or for those who have quietly gone on to live their lives. Tourette Syndrome varies depending on tic severity, comorbid diagnoses, environmental factors, and personal adaptability and resilience. The literature focuses on all of the possible difficulties found in those with Tourette's and other diagnoses, even though many persons with Tourette syndrome will not encounter all of those issues. When I met in person most of my online friends with Tourette's, I finally stopped panicking and made peace with tics. I hope this website will give you the tools and background knowledge to move more quickly to "So What?" Acceptance of the natural waxing and waning nature of tics can help as you negotiate life with a baffling condition.
"Clinicians must emphasize that the most important predictors of long-term outcome and well-being have little or nothing to do with the presence of tics. Intelligence and the quality of socialization have been shown repeatedly to be the best long-term predictors of outcome, regardless of diagnosis. Bright, academically successful children who have close and enduring friendships are likely to continue to be successful interpersonally and professionally throughout their lives, regardless of their future tic symptom severity. ... Severely debilitating TS in adulthood is a rarity and represents the furthest extent of a very broad spectrum of symptom severity." Peterson and Cohen, The Treatment of Tourette's Syndrome: Multimodal, Developmental Intervention. Presented at a closed symposium held in New Orleans, Louisiana on April 12, 1996. psychiatrist.com/psychosis/worldwide/current/tourettes.htm
You may ask if I am generalizing in the positive direction. If you read the research literature carefully, in light of the concepts provided here, you will find that the positive prognosis is an accurate generalization. Some may say that my sons are doing well only because their Tourette Syndrome is "mild." It is not always clear just what the user of the word "mild" means in the context of TS. When used by others, does "mild" mean that tics are not severe or maybe that OC symptoms are not severe? Does it mean there are no other comorbid conditions complicating the picture? There are many different ways of measuring the severity of Tourette's and associated conditions, and personal perception of difficulty plays a huge part in how each person views Tourette Syndrome.
More importantly, is there an implication that someone who has been through some rough places with Tourette's or who has a number of comorbid diagnoses cannot do well in life? If one does not have "mild Tourette's", is one doomed? Is nothing I say on this website applicable to them? And have we become confused about just what Tourette Syndrome is, as we attempt to understand the fuzzy borders between the tics, obsessions and compulsions of Tourette's and the other factors from comorbid diagnoses?
I don’t know what others mean by "mild Tourette's", but I will explain my use of it. We fall into the semantics of calling my sons’ Tourette's "mild" for lack of a better way of explaining that they are currently getting along well in all areas of their lives. What I mean is that Tourette Syndrome is not having a huge impact on their lives today. But, when my son’s Tourette's first came to our attention when he was seven, it was certainly severe.
My sons do not seem to have other comorbid diagnoses, except for the depression years ago that resulted from the deaths. (My older son does have an auditory discrimination issue which he compensated for very well by hitting the books combined with tutoring and hard work.) They currently have almost unnoticeable tics and very little evidence of OC symptoms. But, when my younger son’s Tourette's first surfaced during that stressful time years ago, he had a period of severe tics that were dangerous, painful and constant; such as the head banging, jaw thrusting, eye-rolling and shoulder thrusting. During that period, he also had severe intrusive thoughts and engaged at times in compulsive rituals lasting up to six hours at a time. He was so distracted by his grief, obsessions, compulsive rituals, and tics that he appeared to have significant attentional problems. He had little interest in living. In short, he did NOT have "mild" symptoms and he "looked" like he had not only Tourette Syndrome, but TS/OCD/ADHD. Yet, we were still able to get through that phase with therapy, support and understanding of the underlying issues. Today, we can call his Tourette's "mild," but that was not always the case. This is an important thing for new readers to be aware of as you attempt to look at the road ahead with optimism and as you attempt to learn about the non-medication options for helping your child. The impact of the environment surrounding your child can make a big difference in the expression of Tourette Syndrome. (See a recent study, on the TS Links page, relating family functioning to social and emotional adjustment in children with Tourette Syndrome.)
It can be hard to keep sight of just what Tourette Syndrome may encompass, as most of the literature focuses on TS plus comorbid diagnoses. Indeed a comorbid diagnosis of bipolar disorder or an autistic spectrum disorder or severe hyperactivity may alter the course and severity of Tourette Syndrome. But it is equally important to note the people with multiple diagnoses who have gone on to do well in life and to make those people role models for our children. Some people may believe that only those with "simple" or "pure" or "mild" or TS "only" will do well in life. Yet many people with TS+ have done well regardless of their diagnoses and/or the severity of those conditions. One friend of mine estimates that she tics up to 30,000 times a day, yet some would describe her Tourette's as "mild" because her tics aren’t noticeable to the untrained eye and because she does well in life. I have other friends with Tourette's, OCD, ADHD and/or bipolar who are wonderful human beings, successful in the workplace and at home, and the best friends one could hope to have. Parents may need to be reminded that childhood resilience is a wonderful thing and to never underestimate the power of positive parenting :-)
Each person with TS will be different, but there is strength in numbers. As long as those with "milder" Tourette's, or those who have overcome obstacles associated with TS+, are chased away by scare mongering and inaccurate statements at conferences, support groups or in literature, we all pay the price of that lost strength. Awareness of the FULL spectrum, including the silent majority, will benefit us all. No person with or parent of a child with Tourette Syndrome should have to leave a Tourette Syndrome conference or support group feeling that they just attended an "everything-but-TS" conference. Warning newcomers that Tourette's will get worse doesn’t take into account that, today, Tourette Syndrome may be at its worst at the time it comes to diagnostic attention and understanding may be all that is needed. Claims that Tourette's worsens during puberty or over time are not backed by research and may only reflect the fact that those persons who have more difficulties are more likely to speak up and attend support groups, while the rest quietly disappear. Studies indicate that tic severity is not correlated with the onset of puberty, and that most tics remit or decrease in the majority of children as they go through adolescence. Further, studies show that AD/HD accounts for most of the impairment in those individuals who have both conditions (see several studies cited on the TS Links page). The simple fact is that most children outgrow tics as they pass through adolescence, and that tics alone are not a highly impairing condition. Recent findings show that there is every reason to expect an optimistic prognosis and hope for persons with Tourette's syndrome.
By early adulthood, tic severity may have declined sufficiently that a TS diagnosis may no longer be warranted. Course of Tic Severity in Tourette Syndrome: The First Two Decades. James F. Leckman, MD; Heping Zhang, PhD; Amy Vitale, BA; Fatima Lahnin, BA;
Kimberly Lynch, MSN; Colin Bondi, MA; Young-Shin Kim, MD; and Bradley S. Peterson, MD Pediatrics. 1998 Jul;102(1 Pt 1):14-9.
Tourette syndrome is a developmental neuropsychiatric disorder with a long-term course that is favorable for most patients. Long-term follow-up of an epidemiologically defined cohort of patients with Tourette syndrome. J Child Neurol 2001 Jun;16(6):431-7. Burd L, Kerbeshian PJ, Barth A, Klug MG, Avery PK, Benz B. Department of Neuroscience, University of North Dakota School of Medicine and Health Sciences, Grand Forks, USA.
For TS, it seems that a minority of persons have all tics disappear for a prolonged period, but for many more they diminish to the point where they're not important and not noticed. Roger D. Freeman, M.D., Clinical Head of Neuropsychiatry Clinic at the BC Children's Hospital, Vancouver www.tourette-confusion.blogspot.com/
In our experience for a majority of patients, the period of worst tic severity usually falls between the ages of 7 and 15 years, following which there is a steady decline in tic severity consistent with available epidemiological data that indicate a lower prevalence of Tourette’s syndrome among adults compared to children. It is also typical of the findings reported in follow-up studies of clinically referred Tourette’s syndrome patients. In many instances, the phonic symptoms become increasingly rare or may disappear altogether and the motor tics may be reduced in number and frequency.
In adulthood, a patient’s repertoire of tics usually diminishes in size and becomes predictable during periods of fatigue and heightened emotionality. Complete remission of both motor and phonic symptoms has also been reported, but estimates vary considerably, with some studies reporting rates of remission as high as 50%. In such cases, the legacy of Tourette’s syndrome in adult life is most closely associated with what it meant to have severe tics as a child. For example, individuals who were misunderstood and punished at home and at school for their tics or who were teased mercilessly by peers and stigmatized by their communities will fare worse than a child whose interpersonal environment was more understanding and supportive. Tourette's Syndrome : Tics, Obsessions, Compulsions : Developmental Psychopathology and Clinical Care, by James F. Leckman, Donald J. Cohen, John Wiley & Sons; November 1998, p. 37
In the past, persons with Tourette Syndrome may not have come to clinical attention unless functioning was impaired by significant environmental or psychosocial factors or other diagnoses. Today, less complicated cases are more likely to be detected. But, the gains afforded our generation of children by early diagnosis will be lost if parents accept bad and manipulative behavior in the name of Tourette's, throwing up their hands and excusing or accepting a wide range of issues and behaviors as if they were an intrinsic part of the condition. Many persons with TS or TS+ have overcome significant obstacles, without the benefit of diagnosis, and gone on to live productive and successful lives.
Are there psychosocial and environmental components to the expression of the neurobiological condition of Tourette Syndrome?
Often based upon a multigenerational, genetic predisposition, the multifaceted symptoms of Tourette's syndrome unfold during the first years of life as an interaction between biological vulnerability and adverse environmental events. Tourette's Syndrome : Tics, Obsessions, Compulsions : Developmental Psychopathology and Clinical Care, by James F. Leckman, Donald J. Cohen, John Wiley & Sons; November 1998, p. vii.
A wise online friend uses this analogy: "The color of the jelly beans in a bag has nothing to do with whether the bag has a small hole and the jelly beans fall out, but everything to do with the color of the jelly beans that fall out." Parents have only a few years to influence the positive development of their children in a safe, nurturing, accepting environment. All too often, we hear of parents wanting to medicate away the smallest of tics, oblivious to the unaccepting message that sends their child.
My friend Marietta points out that the language we use to discuss Tourette Syndrome is important. She taught me to use the words "high" and "low" ticcing days instead of "bad" and "good" ticcing days to describe the intensity and frequency of tics, so that we would not unwittingly transmit the message to our children that tics are "bad." The implication that only those with "mild" Tourette Syndrome — whatever "mild" Tourette's is — can go on to do well in life is an equally, yet subtly, misleading use of language: a notion that overlooks a number of individuals who have overcome obstacles associated with their Tourette's or TS plus other diagnoses.
My only suggestion to help you move from "Now What?" to "So What?" is to keep a sense of humor and to continue to read and learn all you can about Tourette Syndrome, but question and interpret everything you read. Learn all you can about other conditions that may or may not be present so that you’ll know what to look for and how to help in the event these conditions present, but don’t assume them to be present to the extent that the literature, based on clinical samples, claims them to be. Another helpful analogy comes from the book, "The Bipolar Child," reminding us that, in an airline emergency, adults are encouraged to secure their own oxygen mask before attempting to help their children. If you can get your own feet on the ground and head on straight, you'll be in a much better place to help your child weather whatever comes his or her way, so don't forget to take care of yourself as you immerse yourself in learning about Tourette's. Keep your focus on the person and the positive prognosis, not on the diagnoses. I firmly believe that the optimistic outlook that comes from careful interpretation of the literature will help you move forward with confidence, no matter what diagnoses you/your child have/has.
Some closing words about prognosis from the "real" experts:
"The individuals with TS who do the best, we believe, are: those who have been able to feel relatively good about themselves and remain close to their families; those who have the capacity for humor and for friendship; those who are less burdened by troubles with attention and behavior, particularly aggression; and those who have not had development derailed by medication. Children with relatively milder tics may become chronic patients and some with quite severe tics may develop into outgoing, happily married and successful young adults." Neuropsychiatric disorders of childhood: Tourette’s syndrome as a model, DJ Cohen, JF Leckman, and D Pauls, Acta Paediatr Suppl 422; 106-11, Scandinavian University Press, 1997.
and, from a recently-published Yale study:
"On average, the most severe period of tic severity occurred at 10.0 years of age. In eight cases (22%), the frequency and forcefulness of the tics reached a severe level during the worst-ever period such that functioning in school was impossible or in serious jeopardy. In almost every case this period was followed by a steady decline in tic severity. By 18 years of age nearly half of the cohort was virtually tic-free. The onset of puberty was not associated with either the timing or severity of tics.
... By early adulthood, tic severity may have declined sufficiently that a TS diagnosis may no longer be warranted.
... In our experience, families find comfort in the realization that tic severity will likely decline through adolescence. Such knowledge is likely to help families and pediatricians live with the tics and to delay the decision to begin psychotropic medications. Ages 8 through 12 are likely to be critical. If medications can be avoided through this period, the patient may have a good chance of never needing them. Although anti-tic medications are available, none are ideal. Over the longer term, starting medications may do more harm than good, given their potential adverse effects and the difficulties associated with medication withdrawal. This is particularly true of the standard neuroleptic agents such as haloperidol and pimozide." Course of tic severity in Tourette syndrome: The first two decades, James F Leckman; Heping Zhang; Amy Vitale; Fatima Lahnin; Et al, 07/01/98, Pediatrics, Page 14, Copyright UMI Company 1998. Copyright American Academy of Pediatrics Jul 1998.
(Just a note: this website was
designed for newcomers to Tourette's syndrome, to be read through in page order.
Strengths and advantages associated with Tourette's syndrome
Growing up with Tourette's
Syndrome: Information for Kids
HBO Documentary on Tourette's Syndrome
Syndrome Research Article Summary
Tourette's Syndrome - Now What?
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