Meet Ellie Jarvie

Former Disability Advocacy LEND fellow in 2017-2018

May 14, 2019

While Tourette Syndrome was once classified as a rare disorder, studies now show that 1 in 160 school aged children will have Tourette Syndrome or a tic disorder.  Six in  seven youth with Tourette will have another mental, behavioral or developmental disorder. 

In fact, according to CDC data,  among children diagnosed with TS, 86% also have been diagnosed with at least one additional mental, behavioral, or developmental disorder, such as:

  • Attention-deficit/hyperactivity disorder (ADHD), 63%;
  • Behavioral or conduct problems, 26%;
  • Anxiety problems, 49%;
  • Depression, 25%;
  • Autism spectrum disorder, 35%;
  • Learning disability, 47%;
  • Speech or language problem, 29%
  • Intellectual disability, 12%, and
  • Developmental delay affecting his or her ability to learn, 28%.
  • More than one-third of people with TS also have obsessive-compulsive disorder.3,4
  • 42.6% have at least one co-occurring chronic health condition.

Similar to autism, as we learn more, we realize that this disorder is much more common than experts once thought.  As professionals and family members who support with people with developmental disabilities, you need to have up to date information about Tourette Syndrome and its treatment.

I am an adult with Tourette Syndrome, and one of the minority with this disorder that have significant symptoms well into adulthood. From my teen years until my early 30's, I had frequent disruptive motor and vocal tics, including coprolalia, the involuntary cursing that only occurs for about 10% of us with Tourette.  Despite being asked to leave high school classes due to Tourette Symptoms, I did not have a 504 plan until my second semester of my senior year in high school, when I understood my rights and started to refuse to leave the classroom.  For many semesters in college I took a reduced course load and had a medical withdrawal at one point due to the severity of my symptoms.  

Through a strong support network, I have been able to earn my master's in social work and work full time. A big part of coping during these years for me and my family was building a strong base of peer and family support.  These strong bonds formed through connections with others who live day to day with Tourette, were life-saving through very difficult times.  I met other young adults through our national association and at summer camps for youth where I worked as a counselor. My family had resources to get information and discuss parenting concerns. This social support helped me learn how to advocate for myself in public.  Even today, I still have times where my tics are noticeable especially during periods of extreme emotion or lack of sleep, and educating others becomes an important accommodation. 

Though my master's work took place at the University of Wisconsin, and I had a field placement unit at the Waisman Center, home of Wisconsin's LEND program, I did not participate during my graduate studies. I graduated with my MSW in 2000. Not only was I not aware of LEND, but graduate school with significant motor and vocal tics was enough of a challenge, I am not sure that at that time, LEND would have been a good option for me. 

I am not a traditional LEND candidate.  Most of my professional work as a social worker focused on work with adults who have significant mental health issues.   In 2017, When I ended up taking a position in the children's Medicaid waiver program, I wanted to renew my contacts with families and professionals working in the developmental disability communities.  

In fact, I found out about LEND quite by accident.  I was attending a community meeting where several students impressed me with their dedication. The roster was sent out in a follow up email, and many identified themselves as LEND scholars.  I researched the program, applied, and was offered a position as a disability advocacy fellow. 

My time as a LEND scholar exposed me to current thinking in treatment and support for those with neuro- developmental disabilities, understanding interdisciplinary practice, family and person-centered care and applying best practices and research in day to day work with families.  No where was this truer than in our weekly life course story groups.  The regular lessons I was learning during my time as a LEND scholar were put to use when I was one of two patient representatives who provided best practice recommendations for the Treatment of Tourette Syndrome and tics for the American Academy of Neurology. 

Throughout this process I advised on language and the patient perspective and was a full voting member on recommendations that were developed from recent research.  At times, this took some work to come to an agreement, as with the recommendations around marijuana.  This was the first time the American Academy of Neurology has issued such guidelines.    

Important take always from this work are:

  • watchful waiting and education can be valid strategy for patients with Tourette.  Think:  individualized treatment that balances benefits and harms.
  • Patients should be evaluated for ADHD, OCD and mood disorders which often occur along with tics
  • CBIT, or comprehensive behavioral therapy for tics should be considered as a first line treatment for those who choose treatment

Most exciting to me as a person with Tourette and someone who provides support to families learning about Tourette Syndrome, is that the committee comprised primarily of doctors recommended a non-pharmacological approach, CBIT, as a first line treatment for Tourette Syndrome and tics. I grew up with the experience of being significantly overmedicated as a way to manage my symptoms and have seen others go through this same struggle.  It is my hope that as more and more people are offered CBIT, youth and families can learn these strategies and avoid unnecessary side effects which can be more debilitating than living with tics.  While not a cure, and not effective for everyone with Tourette, it is an important management tool that provides strategies that put control back in the hands of people living with Tourette Syndrome.  I recently became certified to provide CBIT, and I can say that it makes clear how to break down and teach skills many of us with Tourette have developed over years of trial and error. 

We don't yet have enough providers of CBIT to meet the demand, so future physicians, psychologists, behavioral therapists, occupational therapists, social workers, and other allied health professionals should consider being trained in this approach. 

Ellie Jarvie was a disability advocacy LEND fellow in  2017-2018 with UW-Madison, and a 2018 AUCD Leadership Academy graduate.  She is currently the chair of the Tourette Association of America- Wisconsin Chapter and works for Disability Rights Wisconsin.