By Mary Beth Ellis

S E R I E S C O N S U L T A N T Anne S. Walters, Ph.D. Emma Pendleton Bradley Hospital Warren Alpert Medical School of Brown University

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Foreword: Dr. Anne S. Walters, Ph.D.. ......................................... 6 Chapter 1: What Is Obsessive-Compulsive Disorder?. ................. 11 Chapter 2: The History of Obsessive-Compulsive Disorder.......... 25 Chapter 3: Causes of Obsessive-Compulsive Disorder. ............... 37 Chapter 4: Treatments for Obsessive-Compulsive Disorder......... 47 Chapter 5: Realities of OCD in Adulthood. ................................. 59 Chapter 6: How Families Cope with Obsessive-Compulsive Disorder............................... 73 Chapter Notes. ....................................................................... 87 Series Glossary of Key Terms. .................................................. 88 Further Reading. .................................................................... 90 Internet Resources.................................................................. 91 Organizations to Contact......................................................... 92 Index..................................................................................... 93 Author’s Biography / Credits................................................... 96 KEY ICONS TO LOOK FOR: Words to Understand: These words with their easy-to-understand definitions will increase the reader’s understanding of the text while building vocabulary skills. Sidebars: This boxed material within the main text allows readers to build knowledge, gain insights, explore possibilities, and broaden their perspectives by weaving together additional information to provide realistic and holistic perspectives. Educational Videos: Readers can view videos by scanning our QR codes, providing them with additional educational content to supplement the text. Examples include news coverage, moments in history, speeches, iconic sports moments, and much more! Text-Dependent Questions: These questions send the reader back to the text for more careful attention to the evidence presented there. Research Projects: Readers are pointed toward areas of further inquiry connected to each chapter. Suggestions are provided for projects that encourage deeper research and analysis. Series Glossary of Key Terms: This back-of-the-book glossary contains terminology used throughout this series. Words found here increase the reader’s ability to read and comprehend higher-level books and articles in this field.


Dr. Anne S. Walters, Ph.D.

Almost one in seven children and adolescents in the United States has a diagnosable mental illness, according to the National Institute of Mental Health (NIMH), the leading federal agency for research on mental disorders. That’s more than the number of children and adolescents suffering from cancer, AIDS, and diabetes combined. NIMH

research has found that almost 50 percent of these young people will experience an episode of mental illness before the age of eighteen. The rate of mental illness is even higher among young adults between the ages of eighteen and twenty-five. This is not a uniquely American problem, however. The World Health Organization (WHO) reports that mental disorders are the leading cause of disability among young people in all regions of the world.


The most common behavioral health diagnoses in children include attention deficit hyperactivity disorder (ADHD), behavior problems, anxiety, and depression. Some of these conditions commonly occur together. For example, about three in four children (73.8 percent) between the ages of three and seventeen who have been diagnosed with depression also suffer from anxiety, and almost one in two (47.2 percent) exhibit behavioral problems, according to the Centers for Disease Control and Prevention. What do these numbers mean? To start, it means that mental illness is very common. Most of you reading this will have at least one friend or family member who either is currently struggling or has struggled in the past with a psychiatric illness. That number may even include you and may mean that you have symptoms of both anxiety and depression. In addition, mental illness is becoming more common. Suicide rates have increased in children and adolescents over the past ten years, and this is a major concern at present for professionals in the behavioral health field. No one is sure what has caused these increases, though some speculate it is related to “cultural trends.” A combination of factors such as social media and technology advances or the opioid crisis may all play contributing roles. Other professionals have wondered about how violence in our schools might impact youth


mental health, and still others have pointed to the potential effects of decreased sleep on these illnesses. Despite there being more widespread information about the prevalence of mental health issues for children and adolescents, only slightly more than half of these children receive treatment. What gets in the way? One of the barriers to seeking treatment is the fear that others will find out. Children, adolescents, and even parents fear the stigma of being identified as having a mental illness. Despite progress in the diagnosis and treatment of these illnesses, the stigma that surrounds mental illness is still very profound, even today. Parents fear that their children will experience shame. As long as this stigma exists, it affects the likelihood that children or their families will seek help. Other barriers include doctor and hospital wait lists, concern about medical expense, a shortage of available mental health providers, and lack of knowledge about treatment options. Some of the movements toward reducing stigma have been helpful in this regard. Notable examples are actress Glenn Close and her foundation aimed at reducing the stigma for those with bipolar disorder, or Olympic athlete Michael Phelps speaking out about his own depression. The good news in all of this is that in recent years, evidence-based treatment has become available. The term “evidence based” refers to treatment that has been tested via research and


proven to be effective for various types of mental illness. For example, we know that a form of treatment called “Coping Cat” utilizes a cognitive behavioral form of treatment that is effective for childhood anxiety, and that effectiveness is improved with the use of certain medications as well. Cognitive behavioral therapy (CBT) targets the way that we negatively interpret or perceive situations, and teaches us to “restructure” those thoughts, leading to different feelings and experiences. We know CBT is helpful because researchers have performed studies comparing patients who get this form of treatment with patients that receive other forms of treatment. Our readers will learn more about all these topics in the volumes ahead. We hope that having more information will help you to combat the stigma that surrounds mental illness, and therefore reduce the length of time it takes a child and family to seek treatment. Our hope is that this series will spark conversation and provide important information for children, parents, and school personnel about the various diagnoses that are most common in childhood and adolescence. With this series, we hope you will understand much more about mental illnesses, what is involved, and what to do to help those who might be suffering like family, friends, or even you.



ADA: the Americans With Disabilities Act is a U.S. federal law that provides increased access and protections for those with certain physical challenges. Obsessive-compulsive disorder sufferers who have difficulty finding work due to their affliction can apply for assistance under the ADA chronic: referring to a long-lasting, lifetime, or otherwise persistent medical condition; symptoms might be effectively treated, but the disorder itself might remain compulsion: as it relates to obsessive-compulsive disorder, an overwhelming urge to perform a certain act or ritual to prevent a frightening outcome, such as counting, praying, checking, or thinking of certain “neutral” objects DSM-5 , or the Diagnostic and Statistical Manual of Mental Disorders : the standard handbook of the mental health field; obsessive compulsive disorder appears in its own category here manifestation: in medical terms, how the symptoms of a condition, disorder, or disease appear in a patient


1 chapter

What Is Obsessive-Compulsive Disorder?

My mother walked into my room with some laundry to find me breaking open an old computer disk, slicing apart its filmy guts. “Why are you doing that?” she said. I glanced down at the torn-away disk label marked with my name. I was going to tear that up next and scatter it in many garbage cans, so that no one could piece them together and trace me to it. I looked back up at her, scissors poised. “I don’t know,” I lied, unable to break her heart and let on that I was terrified of the Internet and the people lurking behind its frantic electrons; that I couldn’t occupy a chair a man had just been sitting in for fear of becoming pregnant; that I was afraid of contracting AIDS from library books; that I was terrified of the numbers three and six and had no idea what to do about it. 1 The author of this passage suffers from obsessive-compulsive disorder (OCD). She intellectually understood that her fears were groundless and unusual, but she was overwhelmed by them. Nearly every minute of every day was marked by fear, frantic handwashing,


and the completion of rituals or behaviors meant to ward off catastrophe for her or her loved ones. She was embarrassed by symptoms she didn’t understand that were ruling her life. She told no one about them, not even therapists. She felt powerless, paranoid, deeply depressed, and occasionally suicidal. The most important aspect of her story, however, is that with medication and conscious behavior modifications, she eventually overcame her OCD symptoms to live a fulfilling life. She’s not an unusual case. With constantly improving medical technology, the increasing public awareness of obsessive-compulsive disorder, and the ease of finding information about OCD, it’s becoming ever more possible to combat the symptoms of what many call “the doubting disease.” What is Obsessive-Compulsive Disorder? OCD is a behavioral disorder in which a person’s brain, unprompted, produces disturbing images, thoughts, and fears. The sufferer then feels compelled to perform compulsive acts to eliminate the possibility of a negative consequence associated with those fears. For example, a mother with OCD might become terrified that she will somehow stab her child, so she would lock the kitchen knives in another room and repeat the word “safe” to herself eight times whenever this anxiety surfaces. The fears drive the compulsions , and the compulsions temporarily relieve the fear. These rituals usually only “work” for a short time, and the sufferer typically does not usually have to wait long before worries surface again, prompting another round of compulsive behavior. A person who is terrified about accidentally setting the house on fire, for instance, might ensure that a hair appliance is unplugged—hundreds of times—even though she just reassured herself a few moments ago.


Behavioral Disorders: Obsessive-Compulsive and Related Disorders

Sufferers of OCD might check hundreds of times to ensure they have completed a task, such as unplugging an appliance.


What Is Obsessive-Compulsive Disorder?

Those with OCD might experience many such fears, each with its own associated ritual. While a small percentage of OCD patients aren’t aware that their fears are not sensible, most are frustrated that they can’t escape obsessing over improbable outcomes. Obsessive-compulsive disorder is discussed at length in the The Diagnostic and Statistical Manual for Mental Disorders (DSM-5) , the handbook of the mental health field published by the American Psychiatric Association. Inclusion, exclusion, or change of classification of a disorder in the DSM is often considered the signal of a major political or scientific shift in how a certain aspect of mental health is viewed or what forms of a disorder an insurance company will cover.


One form of OCD is sometimes called “pure O,” meaning “purely obsessional.” This condition focuses on the intrusion of upsetting or even neutral thoughts and images. It was once thought that these patients did not undergo rituals since they did nothing physical to relieve their stress, such as tapping or checking. However, researchers have recently discovered that those with “pure O” do have rituals—but they are mental instead of bodily actions. For example, a person who suffers from thoughts of violence might try to turn away these images by consciously imagining a peaceful lake instead.


Behavioral Disorders: Obsessive-Compulsive and Related Disorders

For quite some time, those with OCD were thought to be inflicted with an incurable form of insanity. Now, obsessive-compulsive disorder is not only covered in the DSM , it also has an individual category with associated disorders. Originally, OCD was considered solely an anxiety disorder; now, with further research, it has been proposed that anxiety is a byproduct of its obsessions and compulsions, and OCD should be considered on its own as a separate disorder. As research into the development and causes of obsessive compulsive disorder continues, details about how to recognize and treat it shift accordingly. What Obsessive-Compulsive Disorder Isn’t The terms “obsessive-compulsive disorder” and “OCD” appear a great deal in popular culture, although the description is often a watered down version of its destructive reality. Real, diagnosable OCD is neither a cute personality quirk nor a joke. OCD is easily stereotyped, so fictional characters with obsessive-compulsive symptoms tend to stand out. Because the disorder is so easily typecast, OCD is often used as a cheap punchline or misrepresented in the media. It’s no surprise, then, that a makeup brand called Obsessive Compulsive Cosmetics briefly took the lip gloss market by storm. Someone might describe themselves as “obsessed with” a vacation destination seen on Instagram, because that sounds more dramatic than simply saying “I’d like to visit there.” Or a friend could say, “I’m so OCD! I just have to see my shoes lined up neatly in the closet!” OCD is not a controllable perfectionist drive, a simple desire to eat all the blue M & Ms first, being a “neat freak,” or even feeling anxiety when personal or professional standards aren’t met. Instead, OCD is a serious medical reality with discernable symptoms and treatment options. Those with obsessive-compulsive disorder might


What Is Obsessive-Compulsive Disorder?

Frequent handwashing is a common compulsion in people with OCD.

simultaneously experience depression because their symptoms overwhelm them, and they might not understand why they are experiencing these strange fears. Or they may be in a treatment program, and discouraged because their progress is slow. In any case, a person with OCD is not defined by his or her symptoms. It is not the whole of his or her identity. No one would choose to have OCD. The disorder is not a cry for attention, the result of watching too many medical dramas, or caused by an overactive imagination. People with OCD are battling an illness, and some of them have been doing so for decades, often with detrimental effects on the people they love the most.


Behavioral Disorders: Obsessive-Compulsive and Related Disorders

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