He Said What?!: The Isolating Effects of Coprolalia
Coprolalia — the involuntary use of socially inappropriate words or phrases — is the most sensationalized symptom of Tourette. It is also one of the more isolating, stigmatizing and most misunderstood aspects of this neurodevelopment spectrum disorder.
Understanding Coprolalia within Tourette Syndrome
Coprolalia is not necessary for a diagnosis of Tourette, does not have to be swear words (in young children it can be something as simple as the word “poo”) and occurs in only a portion of those with Tourette Syndrome. Coprolalia can be random, yet it can also seem purposeful and in context, especially when it’s triggered by or a response to a specific person, place or situation.
According to a variety of current research projects, Coprolalia is reported to occur in between 4–60% of all patients with Tourette Syndrome, though the majority seem to agree that the prevalence is likely around slightly less than 30%. These varying numbers might exist due to a number of factors, including cultural differences, variation in the ages of those they surveyed, and a failure to screen for prior incidents of Coprolalia, rather than simply establishing if they currently have it.
Whatever the percentages truly are, for those who are afflicted with Coprolalia as part of their Tourette it can be an isolating and stigmatizing symptom that needs more awareness, acceptance and understanding.
“It’s extremely embarrassing trying to date or find a job when you suffer from Corprolalia. Because of it, people only see you as a nasty, disrespectful, threatening person. Nobody wants to give you a chance. If they did, they would discover that I am a regular person who loves others and wants to be accepted as a respectful, contributing, member of society.”— Joel L.
Shame, Outrage, and Misunderstandings
Out of all of those in my family with Tourette, only one seems to have dealt with Coprolalia as part of his Tourette Syndrome. For several months it was the repetitive utterances of inappropriate words out loud. He was very lucky. His school was fantastic about it and we did our best to learn to ignore — which was surprisingly easy once we clearly understood it wasn’t something he had control over.
This level of understanding isn’t always available to those who suffer from Coprolalia. An example of this can be found by examining a post by a mother to the popular website Circle of Moms, in which the anonymous parent shared this statement about her child:
“My 9 year old has been diagnosed with Tourette Syndrome for about a year. Pretty intense TS. Just started a few months ago getting vulgar and socially inappropriate (he very loudly proclaimed at the vitamin store that a lady had cut in the line and “that is OUR rightful spot in line!!” He also calls his younger siblings ‘butt-crack’ ‘retard’ ‘freak’ etc. and ‘crap’. Any advice? It is very humiliating to be in social situations when there is a lack of information about Tourette. He is a very, very sweet and gentle guy and he gets very ashamed afterward.”
Another telling description can be found in this comment made to a Reddit member during a question-and-answer session related to his Coprolalia; the author was obviously judging those with Tourette, assigning guilt through perceived purpose in the inappropriate words they shouted:
“Ive seen so many articles an documentaries on tourettes, and one common line i hear over and over again about vocal tourettes is that you dont mean what you say. However ive noticed that alot of the times the tics come out when it seems like you think it. […] Its true that they dont mean to say it, but dont you think it when you say it? And because of the tourette you cant control what you want to say?”
Kathy Giordano and Margo Edelman of the Tourette Association of America addressed this very topic when they wrote about the perceptions surrounding Coprolalia:
“A common misunderstanding is that in order for ‘inappropriate words or sounds’ to be a symptom of TS, they must be said “out of the blue” and must be repetitive in nature. This leads to the mistaken belief that if a student swears once and/or at an “appropriate” time, then it is not due to TS and therefore deserves punishment. Coprolalia can be one word, a string of words, or a phrase, said many times or said once but repeated over time. However, TS symptoms, including coprolalia are different for every individual, inconsistent, change periodically, wax and wane and are increased by stress.”
Imagine for a moment living a life where your very existence embarrasses your family and convinces people that you are lying to them on a regular basis. Add into this mix the concept of being forever the butt of the joke — both to your peers and to society at large. Now pair all of those mental burdens with a disorder exacerbated by stress. How well do you think you’d fare in that life?
Coping with Coprolalia
Eventually my son taught himself methods of coping (like speaking the words without sound, under his breath or into a pillow or jacket) and it became almost unnoticeable. These days the Coprolalia only manifests during times of extreme stress; though given that presentation I’m sure you can understand how it can certainly sound purposeful in the moment to anyone who isn’t aware of the complexities of Tourette Syndrome and the tics that accompany the disorder.
