Tourette Syndrome; How Do You Know This is Real?

Our son is quite a character.  He's always been the "ham" or the center of attention.  If there has ever been a chance to be in the spotlight, he is right there, jumping and waving in front of the cameras and doing whatever to get the attention on him.  

So, there does come some times as a parent that you might wonder, "Is this really Tourette's?"  I mean, how do you know it's for real?  How do I know that these are really tics and not just something he's found he can do to get extra attention?  Or maybe these tics are real, but can he control them more than I think?  Can he decide if there are going to be a lot of tics or a little?  Does he do them on purpose sometimes?  How do you know if tics come from some uncontrollable thing, or what if they are just because he did them a few too many times and developed a bad habit?  

Maybe we are crazy parents, but these thoughts have crossed our minds on occasion.  Of course in our son's case, he seemed to not even know he was scrunching up his face all the time until we showed him in the mirror. Maybe that was a bad thing to do?  And as for the gulping and swallowing, I'm sure he could hear himself doing it so he was aware, but did he really have to do that all the time?  

Tourette Syndrome, as well as many other neurological conditions, doesn't really have a real medical test that can be done to diagnose it.  To be diagnosed with Tourette's, a medical professional, primarily a neurologist, must make the diagnosis by ruling out other possible neurological conditions and seeing that the child's symptoms meet certain criteria.  

So, how did the neurologist know Thumper had Tourette Syndrome?  According to Medscape, 

 Diagnostic criteria from DSM-IV-TR for Tourette syndrome (307.23) are as follows:

• Both multiple motor and one or more vocal tics must be present at some time during the illness, although not necessarily concurrently
• The tics occur many times a day (usually in bouts) nearly every day or intermittently over more than 1 year, during which time there must not have been a tic-free period of more than 3 consecutive months
• The age at onset is younger than 18 years
• The disturbance is not due to the direct physiological effects of a substance (eg, stimulants) or a general medical condition (eg, Huntington disease or postviral encephalitis)
  
  
  
  
  So, Thumper fit into all these criteria.  He was under 18, he had both motor and vocal tics.  The tics had been going on for over a year.  He had never had a tic free period of more than 3 months.  (I don't think he had a tic free period of more than a day!)  And, the neurologist had ruled out any other underlying medical conditions.
  
  
  So, that was it?  
  
  
  Maybe we were still hoping he didn't have Tourette's, or maybe we still felt like we were crazy because no one else (besides the medical professionals) seemed to believe he had it.  I think maybe I was imagining that one day it would turn out to all be a lie and people would be pointing their fingers at us and shouting that the whole thing was a scam.  But for what purpose?  
  
  
  Sure, our little boy was big on attention.  He was always getting into everything as a young child and he was always getting into trouble, but I don't think he would come up with these tics as a way to gain attention.  Really, he had been ticking for many months before we even brought it to his attention because from all we have read, we thought we were supposed to ignore the tics and NOT bring attention to them.  Plus, all the "bad days" where he is gulping uncontrollably, why would he do that?  Why would he cause himself so much pain?  Or when he's at school or playing or just reading quietly with no one around, what reason would he have to be scrunching up his face and gulping over and over again with no audience to see him?  
  
  
  It just didn't make sense that it could be an act.  Although we did have certain adults comment that he was just "doing it on purpose".  
  
  
  Tourette Syndrome has been so made fun of over the years on movies, in television shows, and just as part of everyday joking, that it's hard when it's something in real life.  I don't think people can accept it.  They are thinking it's supposed to be the shouting, swearing, or super violent uncontrollable flailing of arms or something.  While there are many cases of Tourette's that involve these things, it is not always the case.  
  
  
  Still we didn't know, and we always had these little twinges of doubt in the back of our minds, so we wanted to learn more.  Maybe in a way we wanted to be able to prove this was real not just to us, but to all those around us who continued to non-believe.