Explaining Tourettes Video
Content contains coprolalia, an involuntary vocal tic experienced by a percentage of people who have Tourette Syndrome.
Video courtesy of Emelia Remati – Billy Blue College of Design student.
Copyright 2018 TSAA
Thank you to the participants for sharing their first hand experience with TS.
Adolescence is a period where many young people experience discontent with themselves and concern at the many changes taking place in their bodies. Rapid growth, switching on of genes previously silent, and flood of hormones in adolescence all can magnify problems. Increased symptoms at adolescence is normal in TS. Teenagers, particularly, do not want to be 'different'. Factor in tics and unusual behaviours and this can result in much distress.
Sometimes this angst can lead to closing off of previously cordial parent/child relationships. Often we have reported to us that a teenager with TS goes through a period of complete denial, refusing to discuss the disorder or even admit they have it. This is not seen as rational by parents who can observe clearly that TS is very present.
Parents walk around on eggshells, because to broach the subject creates anger or even rage responses. Behaviour can escalate into real problems at home and also at school, leading to suspension and occasionally expulsion. This is devastating to a family, but this period is very important in terms of helping a young person learn to accept themselves. Early diagnosis aids in this, as by the time adolescence rolls around, the child has grown with the knowledge and is more likely to have come to a truce with this ‘thing’, as many refer to their TS.
Sometimes the behaviours can escalate into other conditions such as Oppositional Defiance Disorder or even the more serious, Conduct Disorder. We are often asked how you tell whether behaviour is caused by tics or is just bad behaviour. Our answer is that it doesn’t matter — bad behaviour, even caused by TS, is still unacceptable. Parents need to face this aspect and get help to manage behaviour that goes out of control or negatively impacts on the family. Individual self-control is one thing that is very hard for people with TS. Reducing emotional confrontation is a very important ingredient, along with teaching anger management skills and perhaps, cognitive behaviour therapy.
Behaviour is communication so it is helpful to understand the purpose of the behavior. A parent’s best antedote to misbehavior is a willingness to be helpful. It is important to encourage the child to assume responsibility for failure as mistakes are valuable learning experiences. Making appropriate adjustments to assist the child to learn certain behaviors may be needed — often teens with TS are less emotionally mature than their peers or need more frequent reminders and direction to attain what they are aiming to achieve.
Teenagers' Development and TS
As TS is considered to be a developmental disorder, I suggest that you revise your expectations of your teenager downward a little in terms of age-specific behaviour. Generally most young people with TS tend to be somewhat delayed in developmental progress emotionally and in regard to self-discipline in the early years but catch up in late adolescence or early adulthood. We don't know whether this is part of the disorder or the effect of living with it which can slow down accumulation of learning. In any event, it is well recognised and will make your life a little easier if you try not to be disappointed if your child cannot make the normal age-related milestones as readily as their peers.
Helping Young Adults
Sometimes adolescents need re-educating on their disorder. If they have had an early diagnosis, then what they took on board in knowledge of TS will need to be updated as they mature and have greater understanding. As any parent of an adolescent can tell you, this is no easy task, particularly if the teenager is in denial. You will get your opportunities, however, and you will need to be ready with the answers if you are to help your child. "Just the short answer, not the lecture!" is how most prefer their questions to be answered. Be open and speak about TS to each other and to your teenager, but be brief. Offer them help; the car is a great place to do this, as it seems better accepted, with your attention focused on driving. Be accepting if they choose not to take it, as they know it is there when they need help.
Be a mentor to your child — spend time with them, ask them questions when they are receptive. If they won’t reveal to you, encourage the development of other mentors — relatives, friends, a teacher, a coach, or school counsellor with whom they can talk freely. Avoiding TS as a subject may reinforce to a teenager that it is to be ashamed of — which is wrong. Don’t beat it up, though.
Encourage your child’s talents — it is a wonderful resource in times of trouble to have something you really like doing and are good at. Everyone has something they can do — help your child find theirs. Times sharing their activity are priceless and can make bonds closer.
Make your home a place of safety. That is, allow free expression of tics and symptoms without comment. Remember to love your child often — people with TS frequently develop the notion they are not loveable, in spite of what others say. This can be eased with close, loving care from the family. Don’t forget to include siblings as they often feel isolated with the TS child requiring so much focus, and finally... keep a sense of humour — it is invaluable, especially as young adults can say the most outrageous things!!
Make a Mates Day
Make a Mates Day — A NSW State Government site for young people to access online tools to support mental health of their family and friends.
2014 TSAA National Conference Presentation
Bliss Cavanagh—A Personal Perspective of TS