Tourette Syndrome Reading List
A Cursing Brain? The Histories of Tourette Syndrome, Howard, I. Kushner, Harvard University Press, 1999.Over a century and a half ago, a French physician reported the bizarre behavior of a young aristocratic woman who would suddenly, without warning, erupt in a startling fit of obscene shouts and curses. The image of the afflicted Marquise de Dampierre echoes through the decades as the emblematic example of an illness that today represents one of the fastest-growing diagnoses in North America. Tourette syndrome is a set of behaviors, including recurrent ticing and involuntary shouting (sometimes cursing) as well as obsessive-compulsive actions. The fascinating history of this syndrome reveals how cultural and medical assumptions have determined and radically altered its characterization and treatment from the early nineteenth century to the present. A Cursing Brain? traces the problematic classification of Tourette syndrome through three distinct but overlapping stories: that of the claims of medical knowledge, that of patients’ experiences, and that of cultural expectations and assumptions. Earlier researchers asserted that the bizarre ticing and impromptu vocalizations were psychological–resulting from sustained bad habits or lack of self-control. Today, patients exhibiting these behaviors are seen as suffering from a neurological disease and generally are treated with drug therapy. Although current clinical research indicates that Tourette’s is an organic disorder, this pioneering history of the syndrome reminds us to be skeptical of medical orthodoxies so that we may stay open to fresh understandings and more effective interventions.
A Mind of Its Own: Tourette Syndrome: A Story & A Guide, Ruth Dowling Bruun & Bertel Bruun, Oxford University Press, 1994. Presenting information never before available in one source, this book explains Tourette’s syndrome in an informative, comprehensive, and accessible manner. The story of Michael Lockman, who typifies the average child with TS, is woven into the factual text which contains information on symptomology, diagnosis, natural history, biochemistry, genetics, associated disorders, treatment and related topics. The authors have purposely chosen to portray a relatively mild case of TS since the majority of cases are mild, yet the more severe symptoms of TS are also introduced in the course of the story. Much of the value of the story lies in the way it presents Tourette’s syndrome and its associated disorders in the context of everyday experience.
Adam and the Magic Marble: A Magical Adventure, Adam & Carol Buehrens, Hope Press, 1991. A marvelous story of three heroes – Adam, Chris (both have Tourette syndrome), and Matt (afflicted with cerebral palsy). Constantly taunted by bullies, the boys find a marble full of magic powers that are nearly impossible to control. They accidentally aim a magical spell at the bullies, and … the adventure begins. Humorous and delightful, this fantasy will take you from laughter to tears and happily back to laughter again every time you read it. Exciting reading for all ages, and a must for those who have been diagnosed with Tourette syndrome or other disabilities.
An Anthropologist on Mars, Oliver Sacks, Vintage, 1996. The title story in Anthropologist is that of autistic Temple Grandin, whose own book Thinking in Pictures gives her version of how she feels–as unlike other humans as a cow or a Martian. The other minds Sacks describes are equally remarkable: a surgeon with Tourette’s syndrome, a painter who loses color vision, a blind man given the ambiguous gift of sight, artists with memories that overwhelm “real life,” the autistic artist Stephen Wiltshire, and a man with memory damage for whom it is always 1968. Children With Tourette Syndrome: A Parents Guide, Tracy Haerly, Woodbine House, 1992. A friendly and informative handbook for parents of children and teenagers with Tourette syndrome, an often misunderstood neurological disorder. Written by a team of professionals and parents, the book covers medical, educational, legal, family life, daily care, and emotional issues, as well as explanations of related conditions. Don’t Think About the Monkeys – Extraordinary Stories by People with Tourette Syndrome, Adam W Seligman & John S. Hilkevich, Hope Press, 1992. Don’t Think About Monkeys is a remarkable collection of stories written by fourteen people who live with Tourette syndrome. Ranging from three teenagers learning to come to grips with teasing to adults encountering discrimination, the collection represents the incredible diversity of a disorder as diverse as life itself. The drama of living with a disability and the comedy of a Tourette syndrome conference show the range of a book the Oliver Sacks called “A fascinatingly varied book.” Echolalia – An Adult’s Story of Tourette Syndrome, Adam Ward Seligman, Hope Press, 1991. Echolalia is the story of best selling writer Jackson Evans, who is diagnosed as having Tourette syndrome, a complex genetic disorder characterized by tics, vocal noises Including obscenities), and obsessive-compulsive behavior. At first he is grateful for the answers it brings him, but Jackson soon realizes that the real problems are just beginning. The story is told in a style that captures the rhythms that soothe the Tourette. It ends with the ultimate truth – the answer isn’t in being diagnosed, the answer is in living. The Explosive Child, A New Approach for Understanding and Parenting Easily Frustrated, “Chronically Inflexible” Children, Ross W. Green, PhD. Harper Collins, 1998. We’ve all seen them: children who explode when they’re told to do something or when things don’t go their way. The ones who completely lose control and become verbally and physically aggressive. Spoiled, stubborn, manipulative children. Right? Not so fast. These labels suggest that the behavior of such children is planned and intentional, and popular reward-and-punishment strategies are typically used to teach and motivate them to behave more appropriately. But for a significant number of these children, the standard approach doesn’t always work. Such children are easily frustrated and extremely inflexible. They get “stuck” over seemingly simple requests, benign issues, and sudden changes in plans. They may be very anxious, irritable, and volatile. They may have difficulty telling you what they’re frustrated about or thinking through potential solutions to problems. In clinical terms, they may be diagnosed with any of a variety of psychiatric disorders, including oppositional-defiant disorder, attention-deficit/hyperactivity disorder (ADHD), Tourette’s disorder, depression, and bipolar disorder. If this sounds like your child, you’re probably feeling frustrated, overwhelmed, guilt-ridden, exhausted, and hopeless.
The Gene Bomb: Does Higher Education and Advanced Technology Accelerate the Selection of Genes for Learning Disorders, ADHD, Addictive, and Disruptive Behavior?, David E. Comings, MD. Hope Press, 1996. Explores the hypothesis that autism, learning disorders, alcoholism, drug abuse, depression, attention deficit disorder, and other disruptive behavioral disorders are increasing in frequency because of an increasing selection, in the 20th century, for the genes associated with these conditions. Hi, I’m Adam: A Child’s Story of Tourette Syndrome, Adam Buehrens, Hope Press, 1990. “If your child has Tourette syndrome this book will help them to realize they are not alone. Adam has written about his frustrations, fears and embarrassments, as well as his successes. He has a simple message of others, “Learn about what you have, then teach others about Tourette syndrome.” Infancy and Early Childhood: The Practice of Clinical Assessment and Intervention With Emotional and Developmental Challenges, Stanley I., M.D. Greenspan, 1992. International Universities Press. Provides a systematic, clinically based frame of reference with 20 case studies, discussion of clinical principles, and guidelines and suggestions for dealing with babies and young children (and their parents) who present with emotional and/or behavioral difficulties. Kevin and Me: Tourette Syndrome and the Magic Power of Music Therapy, Patricia Heenan, Hope Press, 2000. The author relates her personal account of music therapy with Kevin, a person with Tourette syndrome, developmental and learning disabilities, ADHD and OCD. This book explores music therapy as a medium for reaching children and adults with Tourette Syndrome. Living With a Brother or Sister With Special Needs: A Book for Sibs, Patricia Vadasy (Contributor), Donald Joseph Meyer, Rebecca R. Fewell, 1985. Seattle, University of Washington Press. Since siblings are not often informed about their siblings’ disabilities by anyone, it could cause more concern; this book’s objective is very important. You can also get basic knowledge of laws, programs, and services for persons with disabilities and their families in the U.S. Living With Tourette Syndrome, Elaine Fantile Shimber, Simon & Shuster, 1995. Designed for sufferers of Tourette’s and their families and friends, a practical guide offers detailed information about diagnosing, treating, and dealing with Tourette syndrome at home, school, and work. Mapping the Mind, Rita Carter, University of California Press, 2000. Mapping the Mind charts the way human behavior and culture have been molded by the landscape of the brain. Carter shows how our personalities reflect the biological mechanisms underlying thought and emotion and how behavioral eccentricities may be traced to abnormalities in an individual brain. Obsessions and compulsions seem to be caused by a stuck neural switch in a region that monitors the environment for danger. Addictions stem from dysfunction in the brain’s reward system. Even the sense of religious experience has been linked to activity in a certain brain region. The differences between men and women’s brains, the question of a “gay brain,” and conditions such as dyslexia, autism, and mania are also explored. The Out-of-Sync Child, Carol Stock Kranowitz, MA, 1998. Recognizing and coping with sensory integration dysfunction. “Difficult.” “Picky.” “Oversensitive.” “Clumsy.” “Unpredictable.” “Inattentive.” Children who have been labeled with words like these may actually be suffering from Sensory Integration Disorder-a very common, but frequently misdiagnosed, condition that can manifest itself in excessively high or low activity levels, problems with motor coordination, oversensitivity or undersensitivity to sensations and movements, and other symptoms. This guide, written by an expert in the field, explains how SI Dysfunction can be confused with ADD, learning disabilities, and other problems, tells how parents can recognize the problem-and offers a drug-free treatment approach for children who need help. Ryan: A Mother’s Story of Her Hyperactive/Tourette Syndrome Child, Susan Hughes, Hope Press, 1990. A moving and informative story of how a mother struggled with the many behavioral problems presented by her son with Tourette syndrome, ADHD and oppositional defiant disorder. Search for the Tourette Syndrome and Human Behavior Genes, David E. Coming, MD, Hope Press, 1996. Dr. Comings tells the story of his 18 years of involvement with Tourette syndrome, from both the level of treating thousands of patients with this common and complex disorder, to his clinical, genetic and molecular genetic research. He quickly realized this was more than just a tic disorder. His patients and their relatives had problems with a wide range of behaviors including attention deficit hyperactivity disorder (ADHD), obsessive compulsive behaviors, conduct and oppositional defiant disorder, rages, mania, depression, anxiety, panic attacks, phobias, sexual, sleep, and other disorders. Because Tourette syndrome is genetic, this involvement with a spectrum of disorders had broad implications about the causes of behaviors that most mental health workers attributed to psychological problems, poor parenting, or learned behaviors. His genetic studies led him to eventually conclude that Tourette syndrome was a polygenic disorder caused by the coming together from both parents of a number of genes affecting dopamine, serotonin and other brain chemical. Dr. Comings relates how the concept that many human behavioral disorders were genetically interrelated was initially ridiculed. These attitudes began to change as other reported similar findings and as his concept gained support from molecular genetic studies of specific genes.
Teaching the Tiger: A Handbook for Individuals Involved in the Education of Students With Attention Deficit Disorders, Tourette Syndrome or Obsessive-Compulsive Disorder, Marilyn Dornbush, Ph.D. & Sheryl K. Pruitt, M.Ed., Hope Press, 1995. On every page it is quite evident that these two writers understand what each child and adult go through when they suffer from Attention Deficit Hyperactivity Disorder, Tourette Syndrome or Obsessive-Compulsive Disorder. The daily struggle with just being able to organize oneself in order to meet either the classroom environment or the work place takes on heroic proportions. With guidance from clinicians such as Dornbush and Pruitt, the sufferers of these conditions will have the tools and strategies with which to cope with their invisible handicaps. Tourette Syndrome and Human Behavior, David E. Comings, MD. Hope Press, 1990. The story of how Tourette syndrome, a common hereditary disorder, provides insights into the cause and treatment of a wide range of human behavioral problems. It covers diagnosis, associated behaviors including Attention Deficit Hyperactivity Disorder, learning disorders, dyslexia, conduct disorder, obsessive-compulsive behaviors, alcoholism, drug abuse, obesity, depression, panic attacks, phobias, night terrors, bed wetting, sleep disturbances, lying, stealing, inappropriate sexual behavior, and others, brain structure and chemistry, treatment and implications for society, over 2,500 references, 30 page Tourette syndrome-Human Behavior Questionnaire, and Extensive index. Tourette Syndrome Finding Answers & Getting Help, Mitzi Waltz, O’Reilly & Associates, Inc, 2001. Tourette Syndrome Finding Answers & Getting Help is a well organized, practical, and enlightening reference that should be read by every parent and professional living with or working with children with TS. Every family struggling with the problems of TS and its associated disorders will find ideas for coping, making it well worth the investment. Tourette Syndrome and Tic Disorders: Clinical Understanding and Treatment, DJ Cohen, BD Bruun & JF Leckman. Tourette’s Syndrome is now recognized as a common, lifelong condition and a “model” disorder reflecting the interaction of genetic vulnerability and environmental factors. Along with progress in research on Tourette’s and other tic disorders, new approaches to treating this neuropsychiatric disturbance are now attracting wide interest among mental health workers. This book provides the broadest, most up-to-date account of this group of disorders, their features, symptoms, etiology and diagnosis, and various psychosocial disorders with similar symptoms. It also presents a variety of environmental and pharmacological therapeutic approaches that underscore areas of disagreement in the field, as well as new genetic, neurochemical and pharmacologic knowledge. Contributors to this work are all leading researchers or clinicians. Tourette Syndrome: The Facts, Mary M. Robertson, Simon Baron-Cohen, Oxford University Press, 1998. Gilles de la Tourette Syndrome (or Tourette’s Syndrome), is an inherited neuropsychiatric disorder affecting about 5 people in every 10,000. It is characterized by motor and vocal tics, and upsetting anti-social behavior such as involuntary swearing and obscene gestures. This book, written by a psychologist and a psychiatrist who have been researching Tourette’s Syndrome for many years, explains the causes of the syndrome, how it is diagnosed, and the ways in which it can be treated. Essential reading for Tourette’s sufferers, their relatives and friends, Tourette’s Syndrome: The Facts will also be of use to clinicians, general practitioners, schoolteachers, and anyone seeking an accessible introduction to the disorder. Tourette Syndrome – Tics, Obsessions, Compulsions: Developmental Psychopathy and Clinical Care, James F. Leckman & Donald J. Cohen, John Wiley & Sons, reprint 2001. Once thought to be rare, Tourette’s Syndrome is now seen as a relatively common childhood disorder either in its complete or partial incarnations. Drawing on the work of contributors hailing from the prestigious Yale University Child Psychiatry Department, this edited volume explores the disorder from many perspectives, mapping out the diagnosis, genetics, phenomenology, natural history, and treatment of Tourette’s Syndrome. Twitch and Shout: A Touretter’s Tale, Lowell Handler, Plume Books, 1999. “Wonderful, compassionate, funny, instructive, inspiring and flat-out brilliant,” said The New York Daily News about the award-winning 1995 documentary film, “Twitch and Shout.” Narrator, associate producer, and photographer for that project, Lowell Handler has lived with Tourette’s Syndrome his entire life. Once thought to be a sign of possession, this neurological disorder causes sudden jerking movements and tics, as well as an uncontrollable propensity to curse. In this revealing memoir Handler tells of how Tourette’s has shaped his life and provides insight into the strange symptoms that are often debilitating and alienating. As the title suggests, Twitch and Shout is no plea for pity; it is a heartfelt and often humorous effort to reclaim and humanize a disorder that can keep others at a distance.
Understanding Tourette Syndrome: A Handbook for Educators, Tourette Syndrome Foundation of Canada, 2001. Educators have an important, if not critical, role in the lives of students with TS. As a crucial member of the education team the teacher’s approach can help the student with TS develop self-awareness and self-management. A meaningful and consistent teacher/student relationship enables the student, as he or she matures, to move from parent-advocacy to self-advocacy. Real and empathetic understanding of these students makes a tremendous difference that will carry over to affect the quality of life for them and their entire families.
Understanding Tourette Syndrome: A Handbook for Familys, Tourette Syndrome Foundation of Canada, 2001. The idea for this handbook began with a desire to share the wisdom and experiences of parents of children with TS/TS+ who have “been there and done that.” It also addresses a need to provide encouragement and support to parents who are isolated either geographically in remote areas of Canada, or by being the only family in a town or area raising a child with TS/TS+. The Unwelcome Companion: An Insider’s View of Tourette Syndrome, Rick Fowler, Silver Run Publications, 1996.The Unwelcome Companion is an insider’s view of Tourette syndrome (TS), an often misunderstood neurological disorder. With a lifetime array of characters, Rick Fowler weaves a first-hand account of his struggle with a merciless and disruptive disorder, and his determination to succeed despite the odds. Once mistaken for madness, even demonic possessions, Tourette syndrome is unique in its ability to force a person to uncontrollably jerk, shout, perform bizarre acts, or involuntarily utter profane statements. The Unwelcome Companion not only discusses the symptoms, causes, and treatments for TS, it takes the reader inside the Tourettic mind. Never before has such a detailed and fascinating account of the inner sensations associated with this complex syndrome been published. The Unwelcome Companion is essential reading for anyone afflicted with TS, their friends and families, teachers and caregivers.
What Makes Ryan Tick? A Family’s Triumph Over Tourette Syndrome and Attention Deficit Hyperactivity Disorder, Susan Hughes, Hope Press, 1996. Every parent should read this book. It is not a self-help manual or a guide to rearing children. Rather, its one mother’s account of her bewilderment at her son’s frightening and violent outbursts, to enlightenment, and ultimately to advocacy, as she confronts uninformed or uncaring “experts” from the medical and educational professions. Much of what happened is griping stuff, and it provides lessons for all of us, regardless of the emotional health of our children. One lesson is that every child deserves a mother like Susan Hughes.