Recently, a brave, young individual with tics reached out to Camp Twitch & Shout asking if they could come to camp; even though they had not received their official Tourette diagnosis yet, as they only had a provisional tic disorder diagnosis. This surprised the TICS board of directors, as we felt we were serving the tic community; however, after looking more closely at the requirements for camp, as it currently stands children must have an official Tourette’s disorder diagnosis in order to attend camp.
The medical community uses the Diagnostic and Statistical Manual of Mental Disorders, or DSM for short, to communicate amongst medical professionals medical diagnoses and what individuals with these diagnoses might be experiencing. In its current iteration (DSM-5-TR), tic disorders are housed under the neurodevelopmental disorders section, and there are 3 main categories of tic disorders: provisional tic disorder, persistent motor or vocal tic disorder, and Tourette’s disorder (formerly Tourette’s Syndrome). After looking at these three different types of tic disorders, the major differences are:
Length of time tics have been present (less than a year or more than a year) and
The type of tics the individual is experiencing (motor and/or vocal)
Having a Tourette’s disorder diagnosis does not necessarily mean that that individual is having more severe or even more frequent tics than another individual with a different type of tic disorder. The differences between tic disorder diagnoses are largely arbitrary and, while there are some nuances, are mostly used to communicate to other medical professionals what the individual is experiencing. For example, if a doctor meets an individual with a provisional tic disorder diagnosis, they know this individual has been ticcing for less than a year and may have both motor and vocal tics or just motor or vocal tics. After one year, this individual will receive one of the other tic disorder diagnoses, depending on the type of tics (motor and/or vocal) they are experiencing.
As many individuals in our CTAS community have experienced, the road to diagnosis can be a long and hard one. Finding a qualified professional for help can be extremely difficult, and the Tourette Association of America has research that supports this. We do not want the long road to a Tourette’s disorder diagnosis to preclude other children with tics from the amazing experience of getting to meet someone else with tics and come to the greatest camp on earth! Because of this, we have decided to open Camp Twitch & Shout to any child aged 8 to 17 with a confirmed tic disorder diagnosis. By doing this, we hope to no longer exclude a child from the magic of camp just because they don’t have both motor AND vocal tics for at least one year. However you tic and however long you have ticced, you are welcome to twitch and shout with us!
If you have any questions about this change, please feel free to email our board member, Emily, at email@example.com. We are excited to welcome our campers this year, old and new! Get ready for a great summer!