Are medical professionals giving false hope to children and parents with Tourette’s syndrome? - is t
If I had a pound for every parent that had reached out to me and said that their paediatric consultant, neurologist or GP had stated that the child will grow out of their Tourette’s by the time they reach adult hood I would be a rich lady.
Parents often hold on to this information, they question this, and want validation, as do the children.
I hear too often children making statements such as “I only have four more birthdays and then they should be gone”.
Often both parents and children are seeking strategies and support to ‘tide them over’ until their tics go away when they hit adulthood.
What are we actually doing to our community by telling them that their tics will more than likely be gone? is this causing more anxiety through their childhood? Is this false hope causing mental health issues such as depression as they hit adult hood, when their “light at the end of tunnel” doesn’t appear?.
The research says that one in every three will grow out of their tics completely by the time they hit adulthood, another one of that three will have a significant reduction in their tics by the time they hit adulthood and the last one of that three, will continue to have Tics into adulthood.
So this research suggests that two of every three children with a tic disorder will see improvement by the time they hit adult hood, so you may be curious as to why I’m questioning this.
The reality is that there isn’t a crystal ball and we do not know which one of the three your child falls into, therefore we do not know what their ‘adulthood’ looks like.
I often feel that there is a lot of emphasis and enthusiasm made by medical professionals that “oh they will grow out of it”, “oh it’s just a phase”, “by late teens, early 20’s you probably won’t have them any more” and this leads to false hope for both parents and children involved. Would it be better to be told future possibilities in a more neutral manner, to help families process the information in a realistic way to help prevent families from getting caught up on information that could actually cause more long-term damage like anxiety and depression if their tics do not reduce by adult hood?
I have/ had many adults reach out to me, where they are now in their early 20’s, they’ve been holding on to the hope their tics would pass like they were told when they were diagnosed but now have realised that this isn’t likely, so want/ need support on how to manage their tics for the rest of their lives.
I of course promote a positive mindset, and believe that having a ‘glass half full,
as opposed to empty’ approach to life is key, however would it be better to build a child’s self esteem and resilience when living with a tic disorder when they’re young, so they have skills to live with it forever, then if they do pass as they hit adulthood it’s a bonus?
MSc, CBiT Therapist