According to the textbooks, Tourette Syndrome (TS) is a movement disorder characterized by involuntary, repetitive movements called “tics.” However, for many people who suffer with TS, the tics per se are not the worst part of the disorder. The worst part is the negative social reactions to the tics, which belittle, isolate, and alienate people with TS from their classmates, families, coworkers, and society.
Individuals with TS often encounter stereotyping, misunderstandings, and negative responses that are more harmful to the psyche of people with TS than anything produced by the tics themselves. Yet, despite the high prevalence of TS (about 1 in 162 children) and the well-appreciated concept that tics can create stigma and discrimination, there is limited understanding of how individuals with TS and their families experience the social reactions to tics. Because of this knowledge gap, there is limited information to guide the development of behavioral interventions to help people with TS. Dr. Jaclyn Martindale aims to fill these voids.
Dr. Martindale obtained her pediatric neurology training at the University of Rochester, where a prominent pediatric movement disorders program, under the direction of her mentor, Dr. John Mink, inspired her interest in persistent (chronic) tic disorders. Now an Associate Professor of Neurology and Pediatrics at Wake Forest University School of Medicine, Dr. Martindale studies the experiences of people with TS and the ways in which those experiences impact them.
Dr. Martindale was the recipient of the 2022 Young Investigator Award from the Tourette Association of America. As part of this award, Dr. Martindale received a $150,000 grant over two years to study how stigma and discrimination are perceived by youth and adults with TS, their caregivers and supporters, and healthcare providers.
With her co-workers, Dr. Martindale conducted in-depth qualitative interviews to understand the experiences of individuals living with, or caring for someone with, TS. The results were published in an article entitled “Beyond the Tics: Experiences of Stigma and Psychosocial Impact in Tourette Syndrome” in Child Psychiatry and Human Development.
The team conducted 35 interviews, from which four major themes emerged (Figure 1). The first theme was the strong perception that TS lacks resources and funding to help people and educate others. Not only is research funding inadequate, but the deficit in resources also negatively impacts day-to-day life. For example, under-resourced schools often cannot provide the flexible and individualized support plans that children with TS require.
and caregivers, four major themes arose regarding their experiences and perceptions.
A second theme that emerged from the interviews is that misconceptions and stereotypes about TS fuel negative experiences for people with the disorder. One broadly held misconception is that tics are purposeful behaviors, especially eye-rolling, which is often misinterpreted as a sign of disrespect or a bad attitude. Some respondents felt that coprolalia (the uttering of obscenities) was more believable to observers than other tics because coprolalia fits with societal stereotypes of TS.
A third theme revealed by the interviews is that negative experiences of people with TS influence how they perceive themselves and how they behave. The emotional and sometimes physical abuse, along with a constant barrage of microaggressions suffered by people with TS, erodes their self-worth and exacerbates their co-occurring mental health challenges. These experiences lead to a negative view of school and activities, contributing to school avoidance and restrictions on outside activities. Many individuals with TS have negative views of themselves and their future career, marriage, and family prospects.
The fourth theme arising from the interviews is much more upbeat and shows that positive experiences can foster resilience and promote success in the lives of people with TS. The presence of supportive and empathetic individuals in their lives helps people with TS feel better about themselves, enhances their willingness to participate in school and activities, and promotes their role as self-advocates.
A fascinating, but discouraging, truth revealed by the interviews is that health care providers are too often sources of negativity in the lives of people with TS. Physicians, nurses, therapists, and first responders frequently hold outdated and erroneous views of tics, especially regarding the extent to which they are voluntary and can be controlled. Health care providers are sometimes dismissive of the impact of tics or uninformed about the importance of treating ADHD and anxiety disorders that often accompany TS.
Dr. Martindale’s recent work sheds new light, through a social-ecological lens, on the experiences and stigma of TS. However, her work in TS extends beyond academic research and reaches into the personal and tangible. Dr. Martindale serves as Medical Director of Camp Twist and Shout, a week-long summer camp for children with persistent tic disorders. Operating almost every year for 17 years, it is the only overnight camp for TS in the country.
Dr. Martindale’s research has contributed greatly to the understanding of what people with TS experience in their daily lives. However, Dr. Martindale is not content to merely understand these problems; she is driven to improve them. In her future research, she hopes to use her knowledge of the TS experience to develop behavioral interventions that can enhance the resilience of people with TS patients.