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Welcome to the Tourette Syndrome - Now What? website,
dedicated to families with a new diagnosis of Tourette's syndrome.
Click the frog for the Tourette Syndrome Message Board
Tourette's syndrome (TS) is a neurological condition which results in involuntary movements and vocalizations called tics. Symptoms of Tourette's are tics like sniffing, coughing, humming, whistling, throat clearing, shoulder shrugging, eye blinking, and neck stretching. Many laypersons inaccurately believe that all persons with Tourette's syndrome have coprolalia — the involuntary utterances of inappropriate phrases — but the majority of persons with Tourette syndrome do not have this symptom.
Gilles de la Tourette's syndrome — also called Tourette's disorder — was once believed to be very rare. Current research shows that Tourette syndrome is not rare, and that the majority of cases probably go undiagnosed and undetected.
The purpose of this website is to help families with a new diagnosis better understand and interpret literature about Tourette Syndrome and realize that the prognosis for children diagnosed with tics is optimistic.
If you’ve just received a diagnosis, you may be in a panic, reading everything you can, encountering a lot of myth and misinformation, and thinking "Now What?" In the event that you’re beginning to panic, I hope the many stories of people with Tourette syndrome here will encourage you to see the brighter side. We've known about Tourette's syndrome for about ten years, and our sons are still two of the nicest, most sociable, well-liked, well-behaved, high-achieving, friendly guys around. This website is to help you look beyond the doom and gloom you may find online, in support groups, and in older literature, to the optimistic prognosis that applies to most persons with Tourette's syndrome. If you've already encountered some of the scary literature from David Comings on Hope Press, you may be encouraged to find that his findings do not enjoy broad peer support.
This website is to support those who are beginning to interpret the literature about Tourette Syndrome — to help them know that Tourette's syndrome is a spectrum (from mild to severe), that most cases are not severe, and to understand why they rarely hear about those who are doing well.
A goal expressed once at a national Tourette Syndrome Association conference was to make Tourette syndrome "irrelevant"; that is, change public perception of and reactions to Tourette's from something that is unusual, bizarre or sensational to something that is less stigmatizing. For our family, Tourette syndrome really hasn’t been a very big deal. "Now what?" is to help others discover that Tourette's syndrome is not always what it’s perceived to be in the media, in the support groups, in the medical literature, or even among medical personnel. In our case, the earlier, panic-stricken days have gone from
Tourette Syndrome — Now
Tourette Syndrome — So What?
I remember well the panic and terror during my "reeling from a diagnosis" phase — the name a friend used to describe that period of adjustment to a diagnosis of Tourette's syndrome. Tourette's is an intriguing condition, made more confusing by scary and often negative myth, misinformation and stereotype. If you’ve been searching for a name for what is "different" about you or your child for a long time, the diagnosis may have come as a relief. But if your child is like ours — the ones who wouldn’t even have been diagnosed until better knowledge about Tourette's syndrome came about recently — or if this is the first recognized case of Tourette's disorder in your family, the diagnosis may have been quite a shock. Relax and read about the side of Tourette syndrome that you don’t often find online or in the literature: the majority of folks with Tourette's syndrome who are quietly getting along just fine!!
Here are some encouraging words from some excellent Tourette syndrome researchers:
"Often, the children with Tourette’s syndrome become expert observers of their own experiences. Indeed, we have often felt that they become too good at this and spend too much time engaged in focusing attention on the self and inner experiences. They think about their minds in the same way that a child with a chronic physical condition, such as diabetes, may become too good a biologist and too preoccupied with how his body works. Children should take their bodies and minds more for granted ... too much reflection on the self is a heavy burden and can lead to a narcissistic over-investment in the self ... When other schoolage children use their energy and channel their aggression into learning, sports, and figuring out the outer world, these children are caught up prematurely in focusing on how their minds work ...
This preoccupation with their own feelings and responses may lead them to premature thoughtfulness and a remarkable ability and openness to portray the flow of their thoughts, feelings, and fantasies ...
One of the pleasures of a long involvement with children with Tourette’s syndrome has been to see that this optimistic attitude is quite often empirically valid. Indeed, most children with Tourette’s syndrome, even those with the most severe difficulties in the schoolage years, develop into functioning and competent adults. Often, they are free of tics, or virtually free of them, unless under stress. Their tics become less noticeable as they are no longer under the microscopic scrutiny of parents and other adults who often see a child’s imperfections under a high degree of magnification. Even those with persistent obsessions, compulsions, and tics, generally are able to cope and move ahead in their lives -- to finish school, go on to college or a job, to marry, and then to have their own families ... most families can be told that available knowledge suggests that only a small percentage of the children of individuals with Tourette's syndrome are likely to have any clinically significant symptoms or any symptoms at all.
... Yet all too often, we have seen development become derailed not only because of the severity of symptoms and repercussions in family and community of tics and obsessive-compulsive disorder, but because of the pursuit of ‘cure’ through many treatments, including zealous use of medication ... we see children who have had many medications started, raised, and lowered in rapid succession ... they become confused about their bodily states, what and why they feel the way they do, and what is under their control. Their sense of autonomy becomes eroded. Helping a child remain a person through the process of being a patient is an important part of clinical care.
There are some redeeming features -- energy, talents, humor, zest for life, as well as conscientiousness and orderliness -- that seem to accompany and grow out of the vulnerability to Tourette’s syndrome and in the ways that individuals with Tourette’s syndrome learn to successfully cope with their adversity. It is the task of clinicians to help preserve these gifts in children and adults with Tourette’s syndrome who come for their care."
From Chapter 1 of Tourette's Syndrome : Tics, Obsessions, Compulsions : Developmental Psychopathology and Clinical Care, by James F. Leckman, Donald J. Cohen, John Wiley & Sons; November 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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