To Be or Not To Be…Tourette Syndrome?

Photo by Alessio Lin on Unsplash

Those of you who know and love me (or those of you who just know me) know that I’m passionate about Tourette awareness and advocacy, and that the particular area I’m the most passionate about is clinician and family education on what Tourette Syndrome actually looks like.

I’ve been asked more than once by family, friends and even clinicians; Does it matter? Is there a downside to misdiagnoses?

Does it matter that adults and children with Tourette are often misdiagnosed as BiPolar or Autistic — especially when an ASD diagnosis allows for access to support they’d never be given with only a diagnosis of Tourette?

My answer is that yes, it matters. A thousand times yes.

It matters that adults and children as young as four are being diagnosed as BiPolar and put on extremely serious medications because clinicians don’t know or understand that Tourette is a complex disorder that involves more than screaming out swear words.

It matters that parents knowingly take, and clinicians knowingly give, false Autism diagnoses because it’s the only way to get access to treatment — as the result of this practice is that it massively undercuts the true and very real impact of Tourette on individuals, families, schools and more. I say this knowing full well that were I in their position I’d likely do the same if it meant my child would get the therapies and support they needed.

No one should have to make that choice.

It matters because this massive undercutting of impact takes away the ability for organizations around the world to press governments, healthcare systems and insurance companies for better access to care because the true impact is insidiously hidden under the symptoms of diseases that share similar symptomology.

It matters because it screams, in giant neon flashing lights the world over, that clinicians still need more training on this complex neurodevelopmental spectrum disorder.

It matters because, as a result, in the US there are only thirteen states in which someone with Tourette can receive specialized care from those who research it and who truly and fully understand all of its’ nuances. Most other nations aren’t as fortunate.

So if I seem strident or constantly babbling on about this particular issue, please understand that when I think on this what I’m thinking on is the entire picture; I’m thinking on the adults and children who are left out in the cold with their correct diagnosis never fully explained to them or their families or who never get diagnosed at all…who’ve been put in care or into institutions for lack of knowledge, who’ve felt secretly ashamed or afraid of a part of themselves that they can’t control yet have no understanding of why.

I’m thinking on the fact that the way forward is through education and awareness. Hopefully you’ll all stand with me over the next month as we fully unveil Tourette Awareness Month and read what we share. Hopefully you’ll understand why this is so important.

Thanks for listening. I’m glad you’re all here.

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