A significant part of my work as a cognitive-behavioral therapist specializing in anxiety and related disorders is providing families with recommendations for good resources. "Good resources," in these cases, are usually books and websites that offer general, up-to-date information on the disorder for which I am treating the child, as well as sound suggestions for at-home interventions (i.e., parent manuals). Of course I provide such psychoeducation in session, but I like parents to be able to hear the information more than once, from more than one source, and for it to be accessible to them outside of the therapy hour.
What I do not want is for families to garner information or recommendations for treatments from "unsafe" sources – that is, sources that provide information that is not scientifically supported or has been directly contradicted by science. In fact, I explicitly warn families about this, because there is so much misinformation on the web. During initial sessions, when giving my families handouts printed with what I think are the best and safest sources of information on their child's disorder and treatment for that disorder, I typically say: "Please DO NOT put the name of your child's diagnosis into Google search and hit 'return.' You will receive millions of hits, many of them from untrustworthy sources having something to sell, and you will feel even more overwhelmed than you already do. Instead, start with these I am recommending – you can always read more later."
I've given my recommendations for resources on obsessive-compulsive disorder, and for children who have difficulty with pill swallowing. What follows are my current recommendations for good resources on tics.
Per the new Diagnostic and Statistical Manual-5 (DSM-5), a tic is a "sudden, rapid, recurrent, nonrhythmic motor movement or vocalization." Common motor tics include repetitive blinking, shrugging, or facial grimacing; common vocal tics include sniffing, throat clearing, or grunting. Tics are common: 1 in 20 children will experience a transient tic (lasting just a few months) at some point in their lives. When tics continue over the course of development, they typically become more complex, such as needing to touch or knock (or sniff or lick) objects, make a series of seemingly purposeful movements, or repeat certain words or phrases.
Tic disorders, including Tourette's Syndrome (which merely requires the presence of vocal and motor tics) are diagnosed when tics have been present for a least one year with onset prior to age 18. Tics tend to follow a waxing and waning course, with tic frequency quite severe at some times and perplexingly nonexistent at others.
Persons with tics typically describe experiencing what is known as a "premonitory urge" just prior to the tic's occurrence, which for those of us without tics feels somewhat akin to the buildup of physical tension prior to, say, a sneeze or a yawn. Once the tic occurs, that physical tension is released – at least temporarily. Ask any kid why they just ticced, and the response is usually one of two things: "No, I didn't" (sufferers are often unaware of how often they tic) OR "I just had to do it" (Again, think of how you feel prior to a sneeze or a yawn).
Full blown tic disorders tend to follow a reasonably predictable developmental course, with an average age of onset around 5 to 7-years-old, followed usually by increasing frequency and intensity of tics over the course of the tweens, with most severe tics tending to occur around age 10-11. After that, tics tend to decline significantly, such that, for two-thirds of individuals, tics have fully (or nearly) resolved by mid-adolescence.
Because of these favorable odds, many clinicians, myself included, do not recommend formal intervention for tics unless they are causing significant functional impairment for the child. By "significant" I mean: "My tics are causing ME lots of embarrassment" or "The motor tics are so severe that I am getting cramps and aches," or "My tics are really disruptive to other kids in the classroom or my own attempts to study and do homework." Mostly what I hear parents say is some version of "Make them stop! We're so afraid he'll be teased!" only to have their child tell me "My tics don't really bother me, and only a few kids have asked me about them." In those cases, I don't recommend treatment, other than some psychoeducation for the family about not paying too much attention to the tics unless they grow worse.
If, however, tics are severe enough and the child is motivated for treatment, the recommended evidence based therapy is Habit Reversal Training (HRT), a behavioral therapy that consists of two main components: 1) Daily monitoring of a tic until the child can identify the premonitory urge that precedes it, and 2) Repeated practice at performing a Competing Response (CR), another action – such as deep breathing for a vocal tic – that is less noticeable than the tic itself. Via repeated use of the CR, the premonitory urge – and hence the tic – fades. Some medications are also used to treat tics and associated symptoms if they are severe/debilitating.
To families, I ALWAYS recommend the website maintained by the national Tourette Syndrome Association, a non-profit membership organization that offers great information, resources and referrals to help sufferers and their families cope with the problems that can accompany tic disorders. The organization also funds scientific research on the causes and treatments of tic disorders, as well as develops outreach and education efforts. TSA puts on an excellent biennial conference for researchers, treatment providers, and sufferers; the next one will occur March 20-23 in 2014 in Arlington, VA.
Here's a great, straightforward, and short video that explains the process of Habit Reversal Therapy by Dr. Barbara Coffey, one of the top researchers in this field.
Kids with TS (and their parents) often benefit from meeting others with similar issues.TSA runs local chapters and support groups across the country – here are links to those in Pennsylvania and New Jersey. NJCTS holds family weekend retreats. PA Tourette Syndrome Alliance runs a camp for families near Gettysburg each summer.
Rich, famous, and beloved American Humor writer David Sedaris suffered from a severe case of Tourette's Syndrome as a child and teen, all hilariously, harrowingly documented in his short piece "A Plague of Tics"" published in the collection Naked. But here's audio of him reading the piece. Will tell you more than you need to know, if you can hear through your laughter and tears.
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