QUALITY OF LIFE AMONG YOUTH WITH TOURETTE SYNDROME
From the Youths’ Own Perspective
by By Tari Topolski, PhD
Research Scientist/Affiliate Assistant Professor at University of Washington
Greater Seattle Area
It is routinely assumed that children and youth with chronic illness, such as Tourette Syndrome are at risk for poor quality of life outcomes. Moreover, quality of life is an important and primary justification for the management of Tourette Syndrome. Despite this, very few studies have been conducted to assist in determining the factors that affect quality of life of youth with Tourette Syndrome. Most studies focus on tics which are the quintessential characteristics of Tourette Syndrome, but vary in features of severity, frequency and interference, and their imposition may range from inconsequential to severely disabling.
There is some evidence in the scientific literature to support the assumption that youth with chronic tics are at increased risk for poor quality of life outcomes. Several research studies have shown that motor tics especially can have damaging effects on social relationships (Storch, 2007; Bawden et al., 1998; Champion et al., 1988; Topolski et al., in prep). This is, in part, due to the fact that adolescence is a time when self-awareness is strongly affected by social interaction with peers.
During early adolescence group involvement reaches its highest point. Conformity peaks, especially among 11 to 13 year olds and is greatest among youth with low status among their peers. Groups vary in structure and nature, but serve as the adolescents’ primary bridge to the future. They provide a sense of belonging, which is especially important in the transition from being a child to being an adult. The group helps the youth master uncertainty by setting norms for behavior including what clothes to wear, what music to listen to and what language to use. Youth, who are perceived as “different” from their peers, often times are excluded from “the group.” Because conformity is tantamount with the group, higher status groups often use teasing, snubbing and gossip to enforce social exclusion of youth they perceive as lower status. New members of the group are socialized to enforce rejection of the lower status youth. As one youth we interviewed with Tourette Syndrome put it when asked what advice he would give a younger youth with Tourette who was being teased at school:
- “take a chance…, ‘cause if you just try to hide from them for the rest of your life, you’re not going to be happy. Try to be their friend. If that doesn’t work, make friends with people who are higher than they are, so they’ll be made fun of, which worked for me in the past.”
The group mentality also extends beyond the group, in that youth who are not targeted by the group as an outsider are reluctant to interact with rejected youth for fear that they will then be rejected.
Quality of life is comprised of more than just social relationships. In our previous work we conducted interviews with youth with and without chronic conditions to ascertain what things the youth themselves feel are important to having a good life. Some of the areas that youth feel are important include family, friends, belief in themselves, a sense of belonging, safety both at home and at school, feeling that other people respect them feeling that they have a future to which they can look forward and for many youth a sense that their spiritual beliefs give meaning to their life.
So, how do youth with Tourette Syndrome feel their lives are going? To answer this question, we used both quantitative and qualitative methods to assess the youths’ perspective of their quality of life. As part of the quantitative methods 96 youth with Tourette Syndrome completed a quality of life measure that was designed to be completed by youth with or without a chronic condition. The measure assessed youths’ sense of self, their social relationships, their environment (such as their feelings about their future, their engagement in activities and their resources), as well as a global assessment of their satisfaction with the way their life was going at that moment. We compared the answers of the youth with TS to youth who had Attention Deficit Hyperactivity Disorder (ADHD), youth who had mobility limitations and used wheelchairs or crutches, and youth who did not have any type of chronic condition. In all areas, youth with Tourette Syndrome reported the lowest quality of life scores.
A review of the relationship domain indicated that youth who had more severe tics or who, in addition to their TS, also had Obsessive Compulsive Disorder or ADHD reported feeling more unwelcome, spent less time with friends and had more family arguments than youth who had milder tics and no other conditions.
In our qualitative interviews with the youth, one of the most common themes we heard about were the difficulties youth faced in school. Whether it was because their tics interfered with their ability to complete exams or they were noticed by their peers, youth with Tourette Syndrome often faced ridicule.
- “It’s like, it’s harder just to be in school when like I blink my eyes, and they’re like ‘You have eye cancer.’ And they’re like throwing paper planes at my head, and they’re, and they’re writing eye cancer with an eye in the middle.”
There were a number of youth who felt a need to protect themselves, and their solution to it was to isolate themselves socially.
- “It makes it difficult to make friends, especially in the teenage years because people are just so judgmental on what you look like and what you do.”
- “it’s just my tics make me a little different from everybody else, and I tend not to socialize with everybody.”
The clear message from these qualitative interviews with the youth is that stigmatization is hurtful and impacts their quality of life. Parents, teachers and clinicians need to be aware of the impact that youth with TS can sustain from negative social experiences.
Some simple steps may help in responding to potential stigmatization among youth with Tourette Syndrome. First, we should be alert and recognize stigma in both the school and the community and be aware of the impacts of long-term stigma. It is helpful to talk with youth about stigma experiences and to ask about teasing or bullying. It is important to identify the threshold when teasing becomes a damaging burden and to intervene with counseling or peer support. Finally, we can help reframe social values if we are willing to have a conversation with employers, schools, and insurers about enacted stigma and discrimination.
On a broad societal level, it is imperative to consider how public media could be used to re-build norms and expectations. Could advertising, film and theatre be a medium for creating norms of understanding and honoring difference? Moving beyond stigma will promote positive, healthy and diverse contexts, within which acceptance and resilience are both enacted and felt by persons with Tourette Syndrome.
Bawden HN, Stokes A, Camfield CS, Camfield PR, Salisberry S. Peer relationship problems in children with Tourette disorder or Diabetes Mellitus. Journal of Clinical Psychology and Psychiatry, 1998:39;663-668.
Storch EA, Merlo LJ, Lack C, Milsom VA, Geffken GR, Goodman WK, Murphy TK. Qualify of life in youth with Tourette’s syndrome and Chronic Tic Disorder. Journal of Clinical Child and Adolescent Psychology. 2007; 36:217-227.
Topolski TD, Zinner SH, Freeman R. Quality of life among youth with Tourette syndrome: A comparison study of youth with and without the disorder or comorbid conditions. In preparation.