Childhood Onset Disorders We Don’t Always Hear About:       Part 2 of 2

      Last week, I discussed how there are at least a couple of childhood onset psychiatric disorders that are not often talked about and are frequently misunderstood.  The two in particular that I selected to include in this discussion were Selective Mutism (pun intended!) and Tourette’s Syndrome. Since I talked about Selective Mutism in my last post, today I will conclude this 2 part series by discussing Tourette’s Syndrome, which is sometimes referred to as “Tourette’s Disorder” or simply “Tourette’s”.

     Tourette’s is a disorder that starts in childhood, often early childhood, that is characterized by involuntary (or nearly involuntary) motor movement and vocalizations called tics. Tics, from what I have heard, read, and observed, can be compared to a sneeze or an itch in that they can typically be held in for a short period of time but there is an urge with much pressure to release them that builds and eventually the tic needs to be expressed, just like a sneeze needs to be let out and an itch needs to be scratched. These can consist of something as subtle as a sniffing sound or touching a chair repeatedly to something highly noticeable and/or complex such as grimacing while twisting neck and hitting chest or repeating a phrase someone else just said. Currently, the exact cause or causes of the disorder are not well known.

     In order to be diagnosed with Tourette’s Syndrome, a person must meet certain criteria including the following: The presence of at lease one motor tic and once vocal tic that occur intermittently or chronically for an extended period of time. 

     Tourette’s is typically accompanied by annoying or even distressing “friends” such as OCD, ADHD, Learning Disorders, and other psychiatric and behavioral issues. Some other things associated with Tourette’s that are less often discussed are episodes of rage, an uncanny ability to multi-task extremely well, and an increase in symptoms associated with anxiety and excitement.

     I have noticed that their are multiple myths and stereotypes that surround Tourette’s:

1. Myth/Stereotype-people with Tourette’s shout out profane words. Fact-most recent statistics show that only about 10% of those with Tourette’s actually have a cursing tic, which is called copolalia. 

2. Myth/Stereotypes-it is always very easy to tell if someone has Tourette’s. You will often see and hear many odd movements and sounds within a few minutes of interacting with someone with this disorder. Fact-This is not always true. Like almost all other disorders, their can be great differences in symptom severity amongst various individuals with the disorder. 

3. Myth/Stereotype-the most difficult thing for people with Tourette’s is their Tourette’s. Fact-This is not always the case. Some people have much more difficulty dealing with the co-occurring issues (which I referred to as “friends”) than with Tourette’s itself.

    My younger brother, on a couple of occasion, has given me permission to share briefly about his Tourette’s. I feel like an appropriate way to close out this post is by doing so.

     My younger brother has very mild Tourette’s. Although I am a mental health professional, I would have never picked up on it on my own. At first when my parents were told he had Tourette’s, I thought the diagnosis was wrong! I didn’t see a bunch of weird movements or hear him scream random words. I only finally agreed with the diagnosis after I heard him engage in a loud sniffing tic and I researched more about the disorder. 

     He has reported to me that the most difficult part of having Tourette’s is what he calls “tricky brain” which is the OCD and the health & neurological issues he had that contributed to the onset of these disorders he was likely already predisposed to. He tends to not view the Tourette’s itself as a big deal, just as tics that he feels he needs to do to release pressure.

     Personally, I have noticed that Tourette’s tends to affect him more emotionally than it does in regard to tics. Sure he has tics such as a sniffing noise and having to touch someone or the couch sometimes, but these don’t tend to interfere much currently with his functioning or well-being. He is a very sweet and funny kid but what I have noticed is that he gets angry and frustrated very easily as well as over-stimulated. Like many with the disorder, he is very good at paying attention to about 5 different things all at once.  However, if one of these things interferes with which ever one he wants to pay the most attention to or participate in, he becomes aggrevated. He has difficulty expressing this frustration appropriately and will go into a screaming, crying rage.  

     I will be honest, on the outside looking in, I myself have times where I forget his Tourette’s impacts his emotions and think of his behavior as him just being a pain in the butt! However, as his sister, friend, advocate, and supporter, I must remind myself that some days he just truly does not know how to handle all he feels and experiences.

    We need more people to know about this disorder. Tourette’s is so much more than just some random swearing and jerking disorder. Rather, it is a neuropsychiatric condition that needs to be understood where children and there families can learn how to cope with it and it’s challenging co-occurring issues associated with it, where they can live satisfying and well-functioning lives.

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