Three Questions About Living Resiliently With Tourette Syndrome

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April 24, 2008 at 12:15 pm  •  Posted in Living With Illness by  •  0 Comments

By Lisa E. Cox, PhD, LCSW

Introduction

Dr. Lisa Cox is Associate Professor of Social Work and Gerontology at The Richard Stockton College of New Jersey. Dr. Cox has over 20 years of health social work practice experience and enjoys teaching courses in social work practice, health, and gerontology. Dr. Cox is a longstanding member of the National Association of Social Workers (NASW) and has held multiple leadership roles at the state and national levels (e.g. recent past chair of NASW-DC’s Health Specialty Practice Section; Delegate Assembly; Advisory Committee Member to the Spectrum HIV Train the Trainer Project). She has published empirical research on gerontology, HIV/AIDS, community advisory boards, adherence and serves as a reviewer for a number of selected professional journals and textbook publishers.

Dr. Lori Rockmore is the clinical supervisor of  The Psychological Clinic based in New Jersey specializing in helping individuals with Tourette Syndrome. The Clinic was created through a partnership between Rutgers’ University Graduate School of Applied and Professional psychology (GSAPP) and the Tourette Syndrome Association of New Jersey, Inc. (TSANJ). Dr. Rockmore is a psychologist with expertise in child development, impulse control disorders, parent training, and social and emotional learning. She works extensively with parents and children, and consults with school districts from pre-school through high school. Dr. Rockmore handles the daily operations of the program and directs a staff of therapists, all of whom are advanced doctoral students at GSAPP.

What Is Tourette Syndrome?

Tourette Syndrome (TS) is a neurobiological disorder characterized by motor and vocal tics that usually begin in childhood, that vary in intensity and complexity. TS has been found to occur among all social, racial and ethnic groups, has been reported in all parts of the world, and is three to four times more frequent among males than females. In the past, TS was thought to be rare, but recent studies have changed that perception. Some studies have reported that TS occurs in more than 1% of all children. Despite these large numbers, many children who have some form of TS may never receive a diagnosis or proper medical attention.

What Causes Tourette Syndrome?

TS has a strong heredity component and may often occur with obsessive-compulsive behaviors (OCBs). It is often difficult to assess what are complex tics and what are compulsions. Genetic as well as environmental, infectious, and/or psychosocial factors can influence symptom severity.

While TS follows a somewhat predictable course in terms of age of onset and severity of symptoms, its cause is difficult to characterize because there is no “typical” case of TS. No one dies from TS. However, some who live with severe forms may experience psychosocial challenges and co-occurring issues, including obsessive-compulsive disorder (OCD) and attention deficit disorder (ADD). In later life, when TS tics may change or lessen, the co-occurring issues of OCD and ADD may still dominate the behaviors.

How Do People Cope With Tourette Syndrome and How Is It Treated?

Children who are diagnosed with Tourette Syndrome may not fully understand, at first, why their body makes sudden or rapid movements for no apparent reason. Likewise they may feel unable to control outbursts and they may make spontaneous noises, vocalizations or movements that interfere with their life. Generally, only some TS children have special education needs. Children with TS tend to have the same IQ range as the general population, yet some may have problems dealing with their tics or concomitant conditions such as attention-deficit hyperactivity disorder (ADHD) or other learning difficulties.

Teens may feel ostracized from peers and misunderstood by teachers and helping professionals who are not adequately educated about the etiology and realities of TS. As well, family members may not realize that the follow non-pharmaceutical treatments exist and can be tried:

  1. Cognitive Behavioral Therapy to address teens’ comorbid conditions
  2. Comprehensive behavioral intervention for tics, or to address the individual’s tics, or
  3. Psychoeducational supportive therapy to help with psychosocial issues

Issues related to emotional distress, caregiving, self-esteem, dating, ticcing in public, airline travel, military service, benefits, college, self-advocacy, health insurance, housing, employment and disability are challenges for many adolescents and young adults with TS. In adulthood, many individuals must deal with the added challenges of medication side effects, health decline, and workplace and parenting stresses that may exacerbate tics or other comorbid conditions.

In old age, additional burdens concerning retirement, financial issues and long-term care are present. However, paradoxically, many people who live with TS are extremely creative, intelligent and productive.

Treatment techniques including both the biological and behavioral aspects are preferred and require additional research attention. Social workers and others treating persons with TS need to appreciate how genetic traits and early life experiences affect the physical and emotional well-being of people living with TS. Persons with TS will be encountered in such diverse settings such as schools, the workplace, community centers, assisted living and acute care facilities. Social workers across these settings must be prepared to engage in advocacy efforts to raise awareness about health care and legal issues, so their TS clients receive proper attention and resources.

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To find a social worker in your area who can help with individuals with Tourette Syndrome, please click here.

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