New DX after AS: Tourettes

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Hello,

My son is 7 and now has a (almost) formal Dx of Tourettes, after he got his Dx for AD last year. It isn't exactly a surprise, and I know a thing or two about Tourettes now, but I am still pretty much out in the woods (which in my case means that I haven't read every article that has been published, I'm a bit of a geek when it comes to that).

I am of course a bit worried how this will evolve, so far his vocal tics are not wildly inappropriate, his motor tics are not *that* visible, but I know this might chance. I am most worried about his OCD, though. He tells me he has 'bad thoughts', mostly about doing things that aren't allowed, some a bit more worrying, like 'I just had a thought that I would hurt you' - which he doesn't, and he shares the thought, which is great, but still, worrying to me.

I am really open about our 'different brains', neurodiversity is as normal as being left or right-handed in this house. I try to 'mold' his most inappropriate tics into more appropriate ones, he knows he can't help it, and when kids in his class make stupid jokes, he tells them 'I can't help it', which I think is very good, and we will have a little class meeting next year where we will explain a bit to the kids in his class.

Still, I'm worried. Are there any parents out there with kids who have TS? do you have any good advice, books, resources, what not to do's; etc?

Much appreciated, as anyways...

Hello sidney,

I am a teenager who is diagnosed with ADHD, OCD, Anxiety, Asperger's, and Tourette Syndrome. I am also a Tourette Syndrome Youth Ambassador for the Tourette Syndrome Association, which means that I go into school settings and educate the students and teachers about Tourettes. One of the main characteristics of Tourettes is that vocal and motor tics alike "wax" & "wane," meaning that your child's tics will get more severe and less severe at different times in his life. He can also lose tics, and develop new ones. In addition, stress, anxiety, or both simultaneously can increase tic severity. As for other kids in school, I would recommend that the other kids are educated not just about tics, but their impact on your son's life, how they "wax" & "wane," and that Tourette Syndrome is NOT contagious and individuals affected did not cause their symptoms. You should also emphasize that it is unethical and possibly illegal to bully a paraplegic child, as well as children who have mental disorders such as Tourette Syndrome. This helps the children understand that all medical conditions exist and have an impact on peoples' lives, regardless of whether they are visible or not. Finally, I would recommend CBIT treatment for anyone with Tourettes. I have went through CBIT and rarely have tics anymore, especially disruptive ones. I wish you the best of luck to you and your son.

Yes, I have kids with Tourette's. I have Tourette's, too. I can give you advice, but I just popped on for a minute so let me get back to you. I'll private message you

Thanks smenon3 and pollyfinite!
I'm going to look into the CBIT...

the thoughts that he might hurt you seems to be more of an obsessive thought (sometimes a symptom of OCD). The problem with obsessive thoughts is not that people have them, but that they try really hard to suppress them. Everyone has random, potentially disturbing thoughts once in a while. But we don't act on them, we treat them as anomalies and they go away. I personally think of it as a consequence of divergent thinking and creativity - I'm constantly trying to come up with interesting alternative ways to look at things. In my work this makes me a creative problem solver. In conversations, it gives me a sense of humor. On a subway platform, it might randomly lead me to imagine pushing someone off (because I know I don't want to do that). I label the odd thought as odd and I let it go.

When you actively try to suppress a thought (as a child might try not to think about hurting his mom), you make the thought stronger. The classic example is "how many times have you thought of a yellow truck in the last 5 minutes? Ok, now try not to think of a yellow truck..."
The trick with obsessive thoughts is to give people permission to have them, so that they stop fighting against them. Maybe just have him label it as a "silly thought" and project confidence to him that you're not worried about it. It's just a silly thought and it cant hurt anyone, so lets let it go. You can even casually have a conversation about it...explore the thought. The problem with obsessions is in trying to anxiously avoid thoughts, which leads to stronger thoughts and maintained anxiety. So bravely facing the thoughts diffuses that problem.

This can be hard for people on the spectrum, so if it gets worse you may want to contact a specialist - which I imagine you're already doing. Good luck!

Thanks Emile, I just explained it to him. He liked the analogy of the yellow truck.
And yes, we're seeing professionals. Many thanks for your help!

There is also a book, What to do When Your Brain Gets Stuck, that is very good for helping children with this kind of thought process problem.