Tourette Syndrome: What it is and What it isn't

TODAY is the start of Tourette Syndrome Awareness Month. It's a little odd, because it doesn't cover one specific month, like how the month of April is for Autism Awareness. Instead, TS Awareness begins May 15th and goes to June 15th.

I have spent several years, on and off this blog, sharing about Autism, promoting Autism Awareness, and trying to educate those who are interested in listening. I have done this because my husband and I have a  daughter with autism. But, today, I want to change focus and share a little bit about our son, JJ, who was diagnosed with Tourette Syndrome at the age of 5.

 
In July 2008, we had a 2-hour appointment with a Pediatric Neurologist. JJ had been having motor tics (involuntary movements) off and on for the previous year, starting with some eye blinking that he couldn't control. As time went by, he had developed head nodding tics, leg movement tics, and also started with some vocalizations in his throat. The severity of the tics would come and go and we noticed, when his tics were at their worst, JJ's behavior was much more difficult. He was moody, easily angered, and more fatigued. Based on all these symptoms, and the observations that were made, JJ had met the criteria for being diagnosed with Tourette Syndrome.

Tourette Syndrome is not as widely discussed as other disorders (like Autism) and, because of that, there are quite a few misconceptions about TS, and what it really is.

First of all, let me tell you what Tourette Syndrome is NOT:

• It is not a contagious disease - you can't catch it by being around someone who has it.
• It is not demon possession - at least not in most cases. (Yes, there are people who believe that it is, but that's a topic for another day.)
• It is not the same as having seizures/epilepsy. They are two separate disorders.  
• It is not the same for everyone who has it - it is a "spectrum" disorder.  
• It does not always come with coprolalia (uttering obscene words). In fact, that is very rare in TS cases (only about 1 out of every 10). Coprolalia is not required to get a diagnosis of TS, and it rarely persists when it does present itself. 
• It is not voluntary - believe me, a person would not CHOOSE to have this disorder.
• It is not something that can be controlled - at least not for long lengths of time.  
• It is not caused by a lack of intelligence.

And, now... What it IS:

• It is a neurological disorder - a disorder caused by abnormalities in the brain or central nervous system. 
• It presents with involuntary movements (tics) of the face, arms, limbs or trunk, as well as vocal tics (humming, grunting, clearing the throat, yelling, etc.) These tics are frequent, repetitive and rapid. The most common first symptom is a facial tic (eye blinking, nose twitching, or a grimace), and is later replaced, or added to, by other tics of the neck, trunk, and limbs. Tics will often change over time.
• Many young children will exhibit motor tics as they are developing, but this does not necessarily mean they have Tourettes.  For a child to be diagnosed with TS, he must have multiple motor tics AND vocal tics that have lasted for at least a year.
• It is often an inherited, genetic condition. 
• Tics will wax and wane over time, meaning they increase or decrease for no apparent reason. 
• Tics are often worse with excitement or anxiety; and better during calm or focused activities. Music can be beneficial as some will not exhibit any noticeable tics while they are playing a musical instrument.
• It often involves co-occurring conditions, such as ADHD and OCD, and can also coincide with learning difficulties, developmental delays and sensory processing disorders.
• It is involuntary. Some people with TS can sometimes suppress or camouflage their tics for a short time. However, suppressing them will not make them disappear. People with TS often report a buildup in tension when suppressing their tics to the point where they feel that the tic must be expressed. It is similar to the feeling of needing to blink your eyes after trying to keep them open for any length of time. Or, is similar to what you might feel as you are getting ready to sneeze. You feel the build-up, then it eventually just explodes out of your control. In many cases, if tics have been suppressed throughout the day, they are later expressed during sleep, sometimes causing sleeping difficulties. 
• Depending on the severity of the disorder, tics often decline as children and adolescents move into adulthood, but not always. 
• There are suggestions that environmental agents and/or infections might play a role in the development of TS. Others believe Serotonin levels in the brain can play a part. But there is currently no known cause or complete cure for the disorder.

THREE PEOPLE WITH TOURETTE SYNDROME:

BRAD COHEN. He is an author, speaker, and teacher with TS, and started the BRAD COHEN TOURETTE FOUNDATION, a non-profit organization that helps raise money and awareness to help those affected by TS. A Hallmark movie was made based on Brad's life called "Front of the Class." It is a great, inspirational movie that I recommend watching.

JIM EISENREICH is a baseball player for the Florida Marlins. He was 6 years old when his symptoms began to surface. He started the JIM EISENREICH FOUNDATION for Children With Tourette Syndrome to help diagnosed children, and their families, find answers to their initial questions and provide links to resources that can help them learn to cope with Tourettes.

JAMIE GRACE is a Christian singer, diagnosed with Tourettes at the age of 11. Here is Jamie with an inspiring talk about Tourette Syndrome. Please take a few moments to watch and listen to what she has to say. No matter what kind f challenge you are facing today, you will be encouraged by her testimony: RANSOM NOTE - by Jamie Grace

If you have any other questions about Tourette Syndrome, you can learn more on the National Tourette Syndrome Association website, or feel free to leave questions in the comments below (or contact me privately). I will do my best to answer them.