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Let's Not Forget Adults With Tourette Syndrome

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by Jason Grant

My name is Jason Grant. Some of you may know me from my blog, My Tourette World. I started it to do my part to promote awareness about Tourette syndrome. I was diagnosed with Tourette syndrome at the age of 7. I am a stay-at-home dad and write about the many issues that arise living with Tourette syndrome.

One of my favorite features is called The Children of Tourette, a monthly profile of an outstanding young Touretter and their struggles, their achievements and their dreams of succeeding in life despite their Tourette diagnosis. It gives me great pride to tell these amazing children’s stories and to help raise awareness of this misunderstood condition. I have no doubt the awareness movement started by the National Tourette Syndrome Association, now the Tourette Association of America has greatly improved the lives of thousands of children in the United States.

For children with Tourette syndrome, awareness is power. The power to be confident, safe, and accepted so they can lead happier, fulfilling lives. Awareness also gives them the ability to stand up to insensitivity and debunk the misleading stereotypes promoted by the media. It gives them a much needed feeling of pride.

May 2018 is National Tourette Syndrome Awareness Month. For the second time in my life, I am taking my wife and my son to walk with me at the National Awareness 5K Run/Walk in Corona Park, New York. Events and programs such as this, have made great progress in improving young Touretters’ lives.

Unfortunately though, a segment of the Tourette population is sometimes forgotten or overlooked. You see, older and aging adults have Tourette syndrome too. Thousands of men and women grew up in the 1970s and 1980s like I did. This was a time when the awareness movement was just picking up, but was not as developed and powerful as it is today. Some Touretters even grew into their 50s and 60s undiagnosed, only to discover now that the noises and grunts and twitches and contortions they could not control have a name.

As adults, many like me are disabled or unemployable because their tics and co-morbid conditions such as anxiety, depression, ADHD, and fits of rage are too disruptive for the typical workplace. It must be noted that there are indeed many adults with cases of Tourette syndrome that do not interfere in the workplace. But a lot of us have not been as fortunate.

Some cannot get out of the house because their tics, anxiety, or coprolalia are so severe they are afraid to be in public. Some cannot work because of the physical damage their severe tics and contortions have done to their bodies. Others, like me, can’t work because of the disabling side effects of neuroleptic drugs they were prescribed over the years.

Even worse, some disabled Touretters are going month to month not knowing where they will get the money to pay the rent. And because the government likes to “drag their feet,” those who apply for SSI/Disability payments wait years to have a hearing scheduled.

I am proud of the work I have done telling the stories of children overcoming Tourette syndrome, discovering hidden talents and being successful. And I plan to continue do so. But at the same time, I want to promote awareness of the often forgotten adults who are just scraping by.

So on this National Tourette Syndrome Awareness Month, let’s please not forget the thousands of aging Touretters who need our help, attention and solutions for the challenges they face every day as well.

Originally published: June 4, 2018
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