Staying Social: A Guide To Living With Tourette's

Most people living with Tourette's Syndrome have the mild form of this neurological disorder which is characterized by tics. Tics are sudden, fast, repetitive, involuntary body movements, vocal outbursts, or simply verbal noise. Most children are diagnosed between the ages of five and eighteen. Vocal outbursts, such as racial slurs and swearing, are rare.

Tourette's Syndrome is a disorder that has no known cause, although researchers believe it to have a genetic component concerning a brain chemical called dopamine. The disorder affects around one in 2,000 and tends to peak around ages nine to thirteen with boys affected three to four times more than girls. It often affects more than one family member in an immediate family and often is found in aunts, uncles, and cousins. It is also referred to as a "syndrome" meaning that other conditions such as attention-deficit, hyperactivity disorder, obsessive-compulsive and anxiety disorders may be present. Unless these conditions are creating a quality of life issue, medication is rarely necessary.

Common physical or motor symptoms include grimacing, shoulder shrugging, popping up in your seat, eye blinking or rolling, head jerks and rolls, and sniffing fingers or feeling a need to wipe the nose repeatedly. Verbal or vocal symptoms include making clicking, guttural or throat noises such as constant clearing of the throat and echolalia or repeating words. No two children have exactly the same occurrence of tics and children tend to become proficient in "holding in" their tics while in school or on the job and "releasing" them when in the comfort of their own home. When tics are especially cumbersome, schools are required under the Americans With Disabilities Act (ADA) to make any necessary arrangements regarding taking tests and other timed activities.

Kids with tics tend to be social in groups, yet often seem shy one-to-one. Coping with the tics varies from child to child and with age. Some kids who have arm and hand movements may sit on their hands to prevent movement, for instance. Tourette's is rarely debilitating and children many times find that symptoms lessen or go into remission with age. Even so, as TS children mature to teens and young adults, coping with stressful events such as college and dating tend to worsen symptoms making a traditionally stress-filled time even more challenging.

Maintaining a fulfilling social life for someone with Tourette's is much like anyone else trying to create and sustain relationships. It's work, and a good support system helps alleviate the worries and concerns that accompany Tourette's. Support groups offer an outlet for those who wish to talk about or simply listen to others speak on how Tourette's has affected their lives.

Tourette's Syndrome is not a one size fits all disorder and the ways of coping and living with it are as varied as each individual is unique. Keeping a positive outlook and a sense of humor helps as does living life to its fullest. It's also good to know that just because someone has Tourette's doesn't mean their life is defined by it.

There's an abundance of resources online, here's a few to get you started:

Tourette's Education Comprehensive site for people with Tourette's and those who are newly diagnosed, with medical, research, educational resources and public policy information.

Tourette's and Tic Support Online support group with links for experts, treatments and goals.

Tourette's Syndrome Plus Site for parents and educators on TS and co-disorders, created by a doctor. Behavior, conditions, education and lots of free literature.

Mental Health Needs Professional paper investigating the mental health needs that go along with TS.

Education and Social Primer Written for school leaders about how Tourette's affects students and learning as well as their social lives.

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