Illustration courtesy of Josh Christensen.
Slice of Culture asked on Reddit to see if anyone was willing to share their experiences with us.
We will be referring to the users who shared their stories by letters.
When ILC was diagnosed with Tourette’s Syndrome (TS), their eighth grade teacher accused them of faking it because they didn’t have a 504 plan.
“My response to her, ‘What’s a 504 plan?’” they told Slice of Culture. “I explained that no, I was literally diagnosed by a board certified doctor, and she was embarrassed.”
Late last month, The CT Mirror reported an August study by the Centers for Disease Control and Prevention (CDC) found that 1 in 50 school-age children have some type of tic disorder, including Tourette syndrome. Boys are three times more likely than girls to be diagnosed.
TS is considered to be underreported in children because tics can go unrecognized. The CDC estimates that only half of the children who meet the criteria for Tourette have a formal diagnosis, The CT Mirror added.
According to NJCTS, a 504 plan:
“To be eligible for Section 504, a student must have a physical or mental impairment that substantially limits them in a major life activity such as learning, breathing, attending, walking, seeing, hearing, speaking, behavior, working or caring for self.
“… A student may be eligible for Section 504 services in school even when the major life activity of learning is not impacted.
“The 504 Plan must provide aids and services that are designed ‘to meet the individual educational needs of students with disabilities as adequately as the needs of non-disabled students are met and are based on adherence to procedures governing educational setting, evaluation and placement, and procedural safeguards.’”
But the process is not that simple. ILC said that they wish their teachers understood.
“Teachers seem to think that anyone who needs any extra consideration or support automatically has a 504 or IEP, and in my experience they’re just not willing to give anyone else any grace or understanding,” they added. “I wish they understood how it really works in practice.”
In our previous article about TS, we briefly mentioned a TikToker who makes videos about Tourette’s and her personal experiences with it.
Even with many people speaking out against the stigma and misconceptions – including 20-year-old award-winning singer Billie Eilish – there are still many people who don’t know much about TS, likely due to the lack of education of it.
Coprolalia, which was discussed in our last article, while rare in people with TS, is also one of the most known type of tics, and many people assume all those suffering from TS have it. According to the CDC, only one in ten people with TS have Coprolalia.
We asked users on Reddit to share their experiences with us, given anonymity.
B: “I think the worst thing I’ve ever faced is people mimicking the tics. Not because it is upsetting to see people copy my disorder, I honestly couldn’t care less, but a lot of tics are affected by a thing called echolalia. Which is basically where you will copy what you see/hear, it’s the main reason why people with tics pick up tics from other people or set each other off.
I used to have a whistle tic, but it was heavily affected by echolalia. To the point where I would copy the exact whistle I heard, and people in school very quickly learned about it and learned to take advantage. I was lucky for it to only be a whistling tic, a lot of others have worse tics affected by echolalia, but it was still an awful thing to live with through school. Echolalia is one of the worst parts of Tourette’s imo. Purely because it makes it easy for others to worsen tics. It is also useful I guess as it can really show what kind of person someone is, but that’s just me trying to find something good out of a horrible thing and doesn’t make up for the hardships it causes.
Keep in mind though, not everyone is affected by echolalia the same, and some aren’t even affected at all, the same goes for specific tics, but it is very common as far as I’m aware.”
E: “In middle school, I did a project about TS and I was really proud of it. I got on the afternoon bus with it and my typical bus bullies got a hold of it. They started shouting curse words to “imitate TS” and said rude things about it. I said “I have Tourette syndrome” and they laughed. they proceeded to add that fact to the things they made fun of me about for the rest of the year. very cool!”
O: “Many years ago I was looking at an apartment for rent. I met the woman who lived there and was looking for a housemate. She said she would not rent to me because the way I looked with TS clashed with how she wanted her apartment to look. Like I was a piece of furniture or something. *eye roll* ”
V: “I hate how I’m treated when people see me tic or hear that I have Tourette’s. They just treat me differently. Sometimes they don’t believe me. Other times they forget almost immediately and I have to explain it again.
I was having a really bad tic day and went out to a restaurant with my family and my girlfriend. After a little bit, my tics started acting up again and the workers were looking at me weird and laughing.”
H: “It sounds totally ridiculous but I kid you not, this is real.
Recently a friend of my ex-roommate told me that the said roommate actually feared me. To begin with, he thought it was scummy that I hid my condition when I first toured the apartment (because obviously I didn’t want to risk ending up homeless).
But then, one night he grew impatient at my vocal tics and came knocking on my door angrily. The next day his family scolded him for his actions. Is it because they are understanding? Nope.
They warned him that people like me were most likely “hated and rejected all their life“ and thought I was prone to sociopathy. They told him to keep his distance and be cautious around me because for all they knew if I wanted to get back at anyone I could ‘put poison in his food.’ On the bright side, the roommate never bothered me again.”
R: “Military leadership telling me I was faking because I didn’t have noticeable enough tics in front of them.
Doctors saying “so you have a facial tic?” after I explain I’m diagnosed with Tourette’s.
Rude looks from people EVERYWHERE assuming I’m a meth addict because methamphetamine is a huge issue where I’m from.
Judgment when I have to replace things my tics broke.
Getting yelled at at work for dropping things: ‘What the f*** is wrong with you”/”what the f**** was that”/”are you tweaking right now”/”ew oh my god what was that noise for” type comments from coworkers, strangers, cashiers, neighbors, etc.
More than anything I find it incredibly disrespectful when people try to tell me how to ‘cure it.’ I live with this 24/7 and I don’t get to turn it off or hold it in or lower the volume, whether it offends, annoys, or distracts myself or anyone else.”
There is currently no cure for Tourette Syndrome. Many people control their tics with prescription medications and CBIT (Cognitive Behavioral Intervention for Tics, a form of cognitive therapy.
“If I have to recount a traumatic experience to help educate others to help them avoid causing or experiencing that trauma, then I’m all for it,” B said.
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