As the mom of two boys with Tourette Syndrome, it probably won’t surprise many of you to discover that I suffer from ADHD. Recently, in a rather large ADHD group that I’m a member of, I was tagged in a video of a child having what appeared to be the type of tics that are quite common in Tourette Syndrome; facial grimacing and an odd type of hand flexing that my family has come to call ‘Spider Man Hands’. While I’m not a doctor, these are tics I’ve seen in hundreds of those I know with Tourette.
According to a lecture given by Dr. Scharf of Massachusetts General Hospital in Boston, tics are “rapid, non-rythmic, stereotyped movements” that most commonly involve the head, neck and arms. Tics occur in bouts and tend to wax and wane. They’re also partially suppressible and typically preceded by what’s known as a ‘premonitory urge’ (an urge, itch or tension). Tourette diagnosis includes at least one vocal tic and two motor tics that begin before the age of 18 and persist for a year even if they’re not occurring at the same time or they wax and wane.
Let’s return to the video, though. While reading through the nearly seven hundred comments I was shocked at replies that ranged from dismissive to dangerous. “Harmless”, commented one individual, “looks like a normal child to me!” added another. Some felt it was just anxiety, some said they were certain the child was having hallucinations. A few even went so far as to share that they, too, do the same things, or used to, and find that ignoring it is key to overcoming the issues it presents.
Admitting that these comments stunned me would be an understatement. It took awhile for me to process what I’d just been witness to. It took even longer for me to find myself capable of forming a cogent reply.
Of foremost importance, you need to know that ADHD and Tourette have a unique, intrinsic relationship. ADHD is one part of the Tourette Triad (ADHD/OCD/Tics) which is found in the majority of those with Tourette Syndrome. The latest research shows that up to 90% of those with Tourette have ADHD and up to 50% of those with ADHD have Tourette or another Tic Disorder.
The genetics of Tourette are also known to involve ADHD. During a lecture given at Baylor College of Medicine in Houston by the Tourette Association of America Texas Chapter, Dr. Shprecher discussed when clinicians should anticipate a tic; “individuals with ADHD, OCD” he explained, and a “family history of tics, ADHD or OCD”.
Looking through those comments, there was one thing which struck me even more; the multitude of caregiver comments, adding up to the hundreds, which associated “stimming” as a behavior exclusive to Autism Spectrum Disorder. To everyone who has a loved one who exhibits “stimming” behavior, I can only hope you’ll read this with an open mind.
The “Sensory Processing Disorder Parent Support” website explains that “repetitive movement, or stereotypy, is often referred to as stimming under the hypothesis that it has a function related to sensory input.” They go on to explain that while stimming is commonly found in Autism it can also be found in other developmental disabilities, including Sensory Processing Disorder (SPD). For all of my family members with Tourette, SPD is a large part of their daily lives. This is true for many others I know and love who have Tourette Syndrome.
According to Dr. Wang at Childmind.org, “Everyone has a stim…”, and that’s an important point to understand.
To complicate matters even further, common ‘stims’ are also identical to common tics. These specific motions and sounds, including hand flapping, echolalia, delayed echolalia and humming just to name a few, are incredibly common tics seen in individuals with Tourette Syndrome.
When we look at the involuntary, repetitive movements, social and emotional delays, the difficulties with social interactions, and the obsessive qualities that are so common in Tourette, it’s easy to see how important it is for a caregiver to find a clinician who’s well versed in both Autism and Tourette to help parse out what it is actually occurring under the umbrella of each disorder.
This becomes especially relevant given that a recent study published in the Journal of the American Academy of Child and Adolescent Psychiatry which found that 65% of adult participants with Tourette Syndrome outgrew what were initially believed to be ASD-specific symptoms during childhood. Their conclusion was clear:
“Higher observed rates of ASD among children affected by TD may in part be due to difficulty in discriminating complex tics and OCD symptoms from ASD symptoms. Careful examination of ASD-specific symptom patterns (social communication vs. repetitive behaviors) is essential”.
Unfortunately, finding clinicians well versed in Tourette Syndrome is much more difficult than it should be. In the United States, what one can only consider a well resourced nation, there are only 16 Tourette Association of America Centers of Excellence which provide care, research, education and training, along with advocacy and awareness for Tourette and other Tic Disorders.
Which is why when it came to that video, I found myself devastated after reading those comments. That might seem an odd choice of words, but as I watched each new comment added to the list, I knew that what I was watching unfold in real time was an untold number of children or adults with Tourette who will continue to go undiagnosed or misdiagnosed.
I don’t profess to know everything and we all know that no one, not even someone with a medical degree, can tell what illness a person has by watching a video on a random Facebook page — regardless of whether what’s seen in that particular video turns out to be tics associated with Tourette Syndrome, stimming associated with any number of developmental disabilities or something else entirely, the outright dismissal combined with the lack of knowledge by a population which could be considered vulnerable to Tourette Syndrome was something I would never have expected.
The one thing I do know well, and through personal experience, is that given the unique nature of Tourette Syndrome and the difficulty in obtaining knowledgeable clinical care, caregiver education absolutely essential.
The old television ads have never been more true; this really is a case of “the more you know.”