When and How Should I Tell My Child He Has Tourette Syndrome?

Many parents are concerned about telling their child about their diagnosis.  Parents may worry that telling their child they have a diagnosis will put unnecessary emphasis on how they are different or on what is wrong with them. Parents are concerned that the child will identify with a label and that it will harm their self-esteem or make them self-conscious. Some parents consider the idea of telling their child they have “tics” but don’t want to use the words “Tourette Syndrome.”  If the child has not heard of TS, it has the sound of an exotic disease, and if they have heard of TS, it is mostly likely from negative portrayals in the media, and they don’t want to scare their child.  If your child also has co-morbid disorders such as ADHD, OCD, or a Learning Disorder, do you reveal those too? How much information is too much? How do you make the decision to tell your child that he or she has TS, and how old should they be before you share that information?

Children often know that something is wrong or different about them long before their parents do. Children as young as 6 can have the awareness that they have physical sensations or urges to move their bodies that must be responded to. They can have an awareness that they are not in control of their bodies and are compelled to make movements that they don’t want their friends to see. If a child has ADHD or a learning disability, they are often fully aware that things are harder for them than it seems like it should be. They can be very aware that their classmates are quickly breezing through work that is taking them a longer time and a lot more effort. If the child is also intellectually gifted, they may feel even more frustrated that they can’t produce what the teacher wants and convey what they know. Many children begin to think they are “stupid and dumb” and avoid work that yields frustration, often bringing their grades down.  They don’t understand why they can’t perform as expected.

For some families, communication doesn’t come easily and is often limited to “Did you do your homework? Are your ready for bed?”  Other families are emotionally open about many topics except the topic of TS, which stays off limits. Many parents worry that discussing a child’s differences with that child will make them self-conscious. Sometimes it is actually the parent who is self-conscious about having a child with a difference and their silence in order to “protect” the child actually serves to protect the parent   Many parents acknowledge their reluctance to talk about TS because they are not sure how to bring up the topic.

In all probability the child is aware that they are different and may be harboring a fantasy about what is wrong with them that is far worse than the reality. One child I know told his mother he thought he had a “broken brain.”  Keeping the diagnosis a mystery fuels their fantasy that what they have is too horrible and shameful to talk about.  Open communication can lift a great burden off the child and take away the power of the secret. Talking about TS in the same matter of fact way one might talk about peanut allergies or hay fever can help your child accept TS as another fact of life.

Telling your child their diagnosis can validate what they are experiencing and alleviate their anxiety. Children can handle the truth; it needs to be communicated in a way appropriate to their developmental level, in vocabulary they can understand, and in the context that you are there to help them and support them however you can. This reassures your child that you accept them as they are, and that is the first step to your child’s own personal journey of self-acceptance. If the topic is no longer taboo, they know they can come to you down the road to share their thoughts, feelings, and experiences of living with TS.

In addition to communicating with your child about TS and its associated disorders and challenges, don’t forget to encourage your child to develop their strengths and to compliment him or her on them. Your child is not a TS kid; your child is a child who happens to have TS. If your child can develop areas in which s/he feels good about him or her self, and can identify with those strengths in addition to their special needs, then having a diagnosis of TS becomes just one of their unique characteristics that is part and parcel of the child you unconditionally love.