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.
Coprolalia can be a particularly distressing symptom and a lifelong struggle for an individual with Tourette Syndrome. Stigmatization, shame and isolation must be reduced by the efforts of the individual, their families, their community and society. Strategies to manage coprolalia will target improving the acceptance and understanding of this difficult symptom which will in turn reduce the frequency and intensity of it’s expression.
Understanding the nature of coprolalia is essential to understanding strategies for the management of coprolalia. Be aware that coprolalia, a symptom of a neurological disorder, will not go away. If the symptom is not being expressed, the individual is either effectively managing or suppressing it’s expression.
Suppression is NOT a desired response. Suppression requires the individual to constantly focus on the symptom reinforcing coprolalia and exhausting the person’s mental capacity to do anything other than suppress. Obsession with suppression may lead to a constant internal struggle.
Effective management will serve to increase everyone’s understanding about coprolalia, reduce stress and prevent hyper-focussing on the symptoms. In a sense, just by changing how we think about and react to coprolalia we can reduce it’s incidence and negative impact.
In order for the individual with coprolalia to be accepted, education about coprolalia must happen. Education is essential to the individual and their families as well as all others who will, or should, become the support network essential for healthy living. This will include the individual’s school, their peers, their medical professionals, clubs they are involved with, their community and society in general.
There are numerous internet sources aimed at the promotion of awareness and understanding of Tourette Syndrome all of which can be useful sources for information and support. Coprolalia is a rare symptom of Tourette Syndrome and there are few comprehensive sources for information specific to this symptom.
Many sources about Tourette Syndrome define coprolalia generally but few offer more than a definition. Coprolalia, however complex, is a vocal tic. If one understands how tics work they can understand how coprolalia works. Use your knowledge of tics and coprolalia to share information with the key people in your own or your child’s lives.
If your child has Tourette Syndrome educate them also and use them as source for information. They are experts about how their brain works but will need adult coaching to gain insight into their symptoms. Teach them the language needed to explain their symptoms to others. Include them when you are speaking to others about their disorder. Advocate for your child, with your child present whenever possible, and teach them how to advocate for themselves.
The gift of self-advocacy will provide them with security and strength and serve them throughout their lives. Practice at home having your child educate others about Tourette Syndrome and coprolalia to improve confidence and self-acceptance.
Always consider that not everyone you or your child meets will understand or care to understand about your own or your child’s symptoms. Be aware and let your child know about this possibility. I often tell my child that others may never understand him or care that he can not control his symptoms.
They may “just never get it”. I let him know that we have done our part by sharing information with them and that it is their choice to make an effort to understand or not. I let him know that we can feel good and satisfied by our efforts knowing we have done what we can do and move forward in a positive way.
Reduce Stress From Coprolalia
Tension can often get out of control in a home where coprolalia occurs. There are not many people whose anxiety doesn’t rise exponentially when faced with loud, sometimes aggressive shouting of obscenities or unkind words. Education, as above, will allow members of the family and those around the individual to understand coprolalia as a symptom of a neurological disorder and not a threat.
With this understanding there becomes a different perspective on the behavior and acceptance and understanding of the individual will follow. Reducing stress in the home will reduce stress to all members of the family. Family members will no longer react with anger or fear. The individual will no longer hyper focus on suppressing their symptoms, thus breaking a powerful positive reinforcement cycle.
Ignore symptoms of coprolalia
The individual with coprolalia already knows that their behavior is unacceptable and not the social norm. In fact, the more unacceptable the behavior the more driven the individual is to perform it. Everyone in the family should know that the individual cannot help doing the behavior and that it is a symptom of a neurological disorder.
Planned ignoring helps to relieve stress on the individual and and within the family. The individual deserves a break and a comfortable place to relax and let their guard down. It is very likely that the individual is exhausted from expending mental energy to suppress some or all of their symptoms while in public. In school or in the workplace they are driven to be accepted and to fit in as best they can. Give them a break at home for working so hard outside the home.
Planned ignoring provides an environment where the behavior is acceptable, reducing the urge to perform it which is driven by the auto inhibitory mechanism that tells them “Do it!” By allowing coprolalia, the tic is not reinforced and the person does not hyper-focus on the behavior. For the family, stress is also reduced. Parents are no longer torn between accepting and punishing the behavior. Siblings are no longer fearful that their sibling is in trouble, and that mom and dad are going to be angry again.
This is not to say you must ignore all swearing or aggression in your home. Every action, wanted or unwanted, uncontrollable or within control will have a consequence. Your child should be held accountable for all behaviors. It remains unacceptable for another child without Tourette Syndrome to swear or copy the behavior.
Tourette Syndrome is not contagious and neither is coprolalia. If a child without Tourette parrots and then tries to justify with “But Johnny says it”, your response should be a negative consequence if it is within that child’s abilities to follow appropriate behavior. It also isn’t to say your child with Tourette Syndrome can just carry on swearing at will if the swearing voluntary it is not a symptom of their disorder.
If an individual has coprolalia it is their reality and will be a lifelong struggle. How well they manage the symptom and how well they succeed will be determined on how empowered they feel about themselves. Unconditional love and acceptance is paramount in nurturing a healthy human being. In the home, ignore benign displays of coprolalia and nurture self-esteem while dealing with this problematic behavior.
Less stress and less focus on the coprolalia will serve to give them more energy to apply other strategies to manage coprolalia. Planned ignoring is not easy but keep in mind the benefits and energy you can use toward other useful strategies.
NOTE: TSParentsOnline has decided to stretch this wonderful series into a third part. Next up: Taking action on coprolalia!