Further Understanding of Tourette Syndrome through Discussion: Thoughts from a Parent and Advocate to Providers and Caregivers
I’d like to get the Tourette Community’s thoughts about the spectrum aspect of Tourette Syndrome and what medical experts have begun to call “the Tourette Triad” — OCD, ADHD and Tics, three behaviors that appear common to the vast majority of those with Tourette Syndrome.
While I’m a wife, mother, friend and advocate for awareness in the Tourette community, I’m not a doctor so I was surprised to find that the research I came across so closely matched my own family’s experience with Tourette — and was so far from what are commonly held understandings of a still very misunderstood disorder. These statistics show that the Tourette Triad is present in more than 50 percent of those with Tourette. Personally, the Triad seems present among everyone I know with Tourette, including my own many TS family members.
Evidence is growing to support the spectrum and Triad theories, although it seems that the data has not yet qualified to be included in the diagnostic recommendations for physicians.
At the Tourette Texas/TAA Conference in February, several lecturers mentioned that the latest studies show only 2 to 5 percent of those with Tourette included in the studies have “Pure TS” (tics without comorbids). And according to a recent lecture published by a TAA Center of Excellence, up to 90 percent of Tourette Syndrome patients have comorbid ADHD (ADD now falls under the ADHD umbrella).
In a 2010 Psychiatric Times article, Dr. Andrea Cavanna wrote that OCD is thought to affect as much as up to 80 percent of those with Tourette Syndrome and that “The obsessive-compulsive behaviors found in Tourette Syndrome appear to be both clinically and statistically distinct from those found in OCD in its isolated form,”.
Those are astounding proportions. Yet, I keep thinking about my own family members with Tourette and how they also have what is, anecdotally at least, the common SPD, the typical Anxiety, the frequent anger and meltdowns. Many suffer from intrusive thoughts and images. There’s also Dermotillomania (aka, Excoriation Disorder) or Trichotillomania.
Every one of my family members with Tourette Syndrome has a high IQ…and every one of them has at least one specific learning disability, most commonly Dysgraphia. Several have Dyscalculia or Dyslexia. There’s also Nystagmus, Migraines, Epilepsy, Sleep Disorders and CAPD spread throughout.
Mine also have or had difficulty with social interactions including an inability to understand acceptable social behaviors, no filter when it comes to speaking, social and emotional immaturity, low frustration points, and rigid thinking. Once again behaviors that are apparently quite common with those who have Tourette.
Our family also deals with Autoimmune diseases; several types of arthritis, seborrhea, thyroid issues, vitiligo, rosacea and inflammatory bowel diseases. There are allergies too, along with frequent illnesses for some, including my 15 year old. Most importantly, our family’s story doesn’t appear to be unique. All too often, managing comorbids seems to be a common thread in uniting our community.
Our eldest son’s first visit to his Tourette Specialist featured a full day evaluation for every one of these possible comorbids. Despite the mounting evidence, information about the spectrum of Tourette and the Tourette Triad has not yet become common knowledge, especially among clinicians.
This brings me to the very reason why I encourage the Tourette community to have more open and honest discussions about the spectrum and Triad aspects. We must also reach out to the ADHD & OCD other communities found among the spectrum of disorders that is Tourette and find the common ground to enable us all to provide a more robust support system for all.
“Everything is extraordinary in this disease: the name is ridiculous, its symptoms peculiar, its character equivocal, its causes unknown, its treatment problematical…”
- Georges Gilles De La Tourette, 1885