Ken Shyminsky, a former vice president of the Greater Toronto Chapter of the Tourette Syndrome Foundation of Canada, draws upon his personal experiences as an teacher and student with Tourette Syndrome to help children with TS and related disorders. He also has Tourette himself and is the founder of the website Neurologically Gifted.
In case you missed them, part 1 of this series discussed the nature of coprolalia. Part 2 talked about coping with coprolalia. In part 3, we’ll mention some action steps you can take when dealing with coprolalia.
Use positive language
Planned ignoring of coprolalia is not just ignoring the symptom altogether especially if the behavior is having a negative or harmful impact on the individual or other members of the family. Be sure to define what negative or harmful impact means for your family.
An individual can contribute to the family’s well being whilst consistently ticcing “F**k, f**k”. It is not harmful just because you or someone else does not particularly want to hear it. In fact, a tic as harmless as this example may actually be helpful in directing the individual’s attention away from more harmful forms of coprolalia.
When helping to redirect behaviours that are harmful or have negative impact, use positive language at all times. If coprolalia is loud enough or involves another person you can use positive language to help modify the behavior or make it less hurtful.
For example, “You may say “F**k” but you need to increase the distance from your brother’s ear when you say it”. If coprolalia hurts another person’s feelings you can use positive language to teach responsibility. For example, “You looked at your brother and called him a name. You didn’t mean to, but you hurt your brother’s feelings. You should apologize and make sure he is OK.” Note: This is not apologizing for having Tourette Syndrome and for having tics, it is an apology for having potentially hurt someone’s feelings (a natural consequence).
Use substitution words
Substitution words are words or phrases that can be strategically placed to modify coprolalia. The important aspect of this technique is that the child must be involved and the word or phrase must satisfy the tic. The individual using this technique must also be highly motivated to attempt to modify the behavior. If they are not invested, this strategy will not work.
Always investigate motivation and the ability to invest mental energy into this task. A child who suppresses tics all day and is mentally exhausted will not benefit from mom or dad saying, “Now Johnny, say Fruit Cake, not F***.” Willingness and readiness is essential and it is okay to put this task aside indefinitely if necessary.
If there is enough motivation and investment from the individual, involve them with coming up with words that are similar enough to satisfy the tic but may be less offensive. For example, “Shitake” or “Fruit cake”. If the tic is not satisfied the individual is essentially suppressing the tic, causing more focus on the actual tic and increasing stress. Increasing stress on the individual is counter-productive to managing coprolalia.
Be Accountable and Responsible
At first glance, being accountable and responsible for your own or your child’s symptoms of coprolalia may seem harsh. Coprolalia is an uncontrollable symptom of a neurological disorder. This is true. They can’t help it and it is not their fault. However, consider that being accountable and responsible does not involve finding fault or laying blame.
For example – you step on someone’s toe while waiting in line. It was an accident, the other person will assume it was an accident and it wasn’t done on purpose. You would apologize and ask if the other person was OK. You take responsibility and you are accountable for the action however unintended and unwanted. If you sneeze, you may apologize or excuse yourself, if you trip and bump someone you would apologize, if you were startled and screamed and scared someone else you would apologize and or explain.
The same should apply to tics and coprolalia which have an impact on others. It does not imply that the individual is willfully or maliciously doing the act. For example, my son has a screaming tic and when his screaming tic and his coprolalia occur together he is screaming profanities. Everyone in our home knows that it is unintentional and an uncontrollable symptom of his Tourette Syndrome.
However, sometimes it hurts! It can hurt our ears, it can startle us, it can shock our neighbours and it can hurt our feelings. As a mom with a young son who has a “f***ing b**** a**hole” tic, being barraged daily with these words, I can say that it hurts, it wears me down, and it makes me sad. No harm is intended and no blame is laid but if he apologizes, it does a few positive things for us all.
Being responsible and accountable for his neurological symptoms gives him power!
- He can teach others about his symptoms and his disorder and promote understanding. ”Sorry, I didn’t mean to scare you. I have Tourette Syndrome and that was something I can’t control. I can tell you more about it if you would like.”
- He can control the affects of his symptoms on others. He can change how others feel and think about him. ”Sorry, that was an accident. I have Tourette Syndrome. I sometimes do things I don’t mean to do. I didn’t mean to do that.”
- He will become a powerful social thinker! He learns to care about what others see of his actions and how they feel about him. Being accountable and responsible means “I know I did something that may have affected you negatively, I care, I am sorry and I did not mean to do that to you”. He will grow to be a caring and kind adult.
Being responsible and accountable for his neurological symptoms makes others feel better!
- Just like stepping on my toe, my son saying sorry to me for saying “F**k you” makes me feel better. I know he can’t help it but by apologizing I also know he didn’t mean it and that he cares about my feelings.
- Apologizing or acknowledging the coprolalia also enlightens others, makes them smarter and more tolerant of others. They probably didn’t know it was unintended until there was the apology and explanation. How could they?
- Promote understanding by educating others. Promote tolerance through understanding. Please share.
I do understand your point but we have to be careful to make sure kids with TS do not feel ashamed for this symptom or for having this neurological disorder.