Parenting Kids With OCD

A Guide to Understanding and Supporting Your Child With OCD

Bonnie Zucker

• Publisher: Routledge
• Year: 2021
• Edition: 1
• eBook ISBN:
  9781000495058
• Topic: Psychology
• Subtopic: Education General
• Index: Psychology

Parenting Kids With OCD provides parents with a comprehensive understanding of obsessive-compulsive disorder, its symptoms, types, and presentation in children and teens. The treatment of OCD is explained, and guidelines on how to both find appropriate help and best support one's child are provided. Family accommodation is the rule, not the exception, when it comes to childhood OCD; yet, higher accommodating is associated with a worsening of the child's symptoms and greater levels of familial stress. Parents who have awareness of how they can positively or negatively impact their child's OCD can benefit their child's outcome. Case examples are included to illustrate the child's experience with OCD and what effective treatment looks like. OCD worsens when there is increased stress for the child; therefore, stress management is an essential component for improvement. Parents will learn how to manage stress in themselves and encourage effective stress management for their children.

Chapter 1
Is It OCD?

DOI: 10.4324/9781003237044-2

Obsessive-compulsive disorder (OCD) has been identified and classified as a disorder since the very late 1800s. Beginning in the mid-1960s, behavioral approaches showed great promise for treatment, and by the 1980s, they evolved into cognitive-behavioral therapy (CBT), specifically exposure/response prevention (E/RP), which is currently used with great success in both the understanding and treatment of the disorder. By now, most cases of OCD are very treatable, and it is essential to have hope about your child’s prognosis and his or her ability to succeed on the path toward improvement. This book is based on the principles of CBT, and my goal is for you to gain a thorough understanding that can then inform you when guiding your child toward improvement. Knowing the specifics of CBT will also help ensure that the treatment your child receives is both comprehensive and consistent with the approach.

Formally included in the category of anxiety disorders in the previous version of the Diagnostic and Statistical Manual of Mental Disorders (DSM; the bible for mental health practitioners that includes the criteria for all mental health disorders), OCD has become its own category called Obsessive Compulsive & Related Disorders (OCRD) in the current version, the DSM-V. This is due to the fact that OCD, unlike the other anxiety disorders, is linked with a host of other disorders, including body dysmorphic disorder (BDD), hoarding disorder, trichotillomania (hair pulling disorder), and excoriation (skin-picking) disorder, and that not all individuals with OCD actually experience anxiety. Regardless of the new categorization, most kids with OCD are incredibly anxious about their OCD and, often, anxious in general.

OCD affects 1%–3% of children and adolescents; at least 1 in 200 children and teens in the U.S. have OCD (American Psychiatric Association [APA], 2013; Ruscio, Stein, Chiu, & Kessler, 2010). Although OCD can appear at any time during childhood or adulthood, it typically starts between the ages of 10–12 or during late adolescence/young adulthood (Greist & Baudhuin, n.d.). In order to meet the criteria for OCD, your child must have either obsessions or compulsions (although most children have both) that cause an interference or impairment in his or her life. Obsessions are persistent unwanted or intrusive thoughts, urges, or images that the person cannot ignore or suppress. For most people, the obsessions cause anxiety and, often, intense fear. Compulsions are repetitive behaviors, rituals, or mental actions that are usually performed in response to the obsessions:

The behaviors or mental acts are aimed at preventing or reducing anxiety or distress, or preventing some dreaded event or situation; however, these behaviors or mental acts are not connected in a realistic way with what they are designed to neutralize or prevent, or are clearly excessive. (APA, 2013, p. 237)

The obsessions and compulsions must be time-consuming (take an hour or more a day) or they need to cause a significant impairment in the child’s life (in academic, social, or other important areas of functioning). It is not necessary for an individual to have insight into the obsessions and compulsions (meaning that they don’t have to be considered to be excessive or unreasonable to the child); however, most children find the obsessions and/or compulsions distressing and unpleasant.

Common types of obsessions include:

• contamination,
• repetitive doubting,
• desire for certainty,
• symmetry,
• “just feels right,”
• scrupulosity,
• unwanted sexual thoughts,
• losing control or doing harm, and
• indecisiveness.

Common types of compulsions include:

• washing/cleaning,
• checking,
• needing to ask/tell/confess,
• counting,
• ordering/arranging,
• repeating actions,
• waiting until or doing it over until it “feels right,”
• praying, and
• asking for reassurance.

In addition to the common types of obsessions and compulsions, there are types of OCD beliefs that define the person’s experience with OCD. These include:

• Overimportance of thoughts: Thoughts can be experienced as powerful as action or truth. Often, the child will question himself, doubting who he is and believing the faulty and unwanted OCD thoughts reflect his true intentions. He will believe that having a thought about something bad happening means it will happen (these are called fusion thoughts, which are discussed further in Chapter 4).
• Desire for certainty: Wanting to know for absolute sure that something did or did not happen. Being totally certain is associated with safety, and anything short of that is typically considered risky. This thinking pattern is often at the root of checking and rechecking and repetitive questioning behavior. The persistent doubting results from not feeling certain that something was completed.
• Overestimation of danger: There is a magnification of the world as being dangerous and an exaggerated sense that something bad will happen or go wrong. There is an unrealistic belief that factually nondangerous behaviors could result in catastrophic outcomes; for example, the child may believe that she can contract a disease like cancer or HIV from actions such as touching a surface or being around someone who is bleeding. The child feels that there are things that need to be done in order to prevent harm, and the rituals can typically reflect extreme avoidance.
• Overresponsibility: The child believes that it is his responsibility to ensure that something bad doesn’t happen or that others don’t get hurt. Often, the rituals will involve excessive checking and taking preventative measures. For example, the child may take it upon himself to check the house for fire risks every time before leaving. Making mistakes can be perceived as a threat to one’s safety, as the person feels (on a sort of karmic-level) that he will be to blame for hurting someone or getting someone sick, or if he did not take “ideal” measures to prevent illness or harm.
• Perfectionism: Not only does the child think it is possible to be perfect, but she also thinks something needs to be perfect in order to count. Often the child will do something and redo it many times in efforts to make it perfect. There can be an excessive concern about needing to know information, a fear of losing or forgetting something important, and an inability to delegate tasks or trust others.
• Rigid/Moral thinking: This inflexible style of thinking assumes that there exists a fundamental “right” and “wrong” in life. If something is done that could be considered wrong, the person feels he will be at risk for punishment.
• Religious scrupulosity: Feeling like they have sinned when no sinning has occurred. It is similar to overresponsibility, as the person feels a sense of responsibility if he or she puts someone “at risk” by not taking preventative measures, yet the responsibility is rooted in his or her worth and/or approval from God: “The French label the emotional condition which is part of scrupulosity ‘the doubting disease.’ This describes well the dilemma of the scrupulous. They feel uncertain about religious experiences and do not find reassurance through the normal means available to them” (Ciarrocchi, 1995, p. 5). A person can have scrupulosity without having OCD, but we will focus on it when it occurs as the main theme or type in OCD. In The Doubting Disease (Ciarrocchi, 1995), the author explained that there are several possible themes of scrupulosity: honesty, blasphemy (against God), cooperation in sin, sexual ideas (e.g., worrying about being lesbian or gay or being a cheater), and charity (e.g., where the person questions her goodness when it comes to serving others).
• Sexual Obsessions: This can be an extension of religious scrupulosity, or the sexual obsessions can occur outside of any scrupulosity. They can include preoccupation with sexual thoughts, sexual orientation, mislabeling normal sexual thoughts as perversion, thoughts about molesting other children or being a pedophile, or having sexual contact with someone inappropriate, such as a teacher or friend’s parent. Usually occurring in older children or teens, these thoughts create a great deal of distress, including guilt, shame, and embarrassment.

Although the causes of OCD are not known, it does tend to run in families, implying a genetic component, although genes are not fully responsible for causing it (Greist & Baudhuin, n.d.). Sometimes, it can be associated with strep infections. PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections) is caused by the body’s response to strep infection, not the actual infection; therefore, it seems to be a faulty reaction of the immune system. A child can be diagnosed with PANDAS when OCD symptoms suddenly appear (acute onset) in a dramatic way, almost like the child developed OCD overnight. Often this diagnosis follows multiple strep infections. However, PANDAS has been expanded to Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) as studies showed that PANDAS symptoms did not always begin after strep infection. Typically, OCD has a more gradual presentation; for example, a child may begin to express some extra concern about germs, ask a lot of contamination-themed questions, then start to wash a little extra, then show some avoidance of doorknobs and public restrooms or of eating food without washing her hands first, and then over months or years, it becomes more severe and time-consuming.

Children who receive the PANDAS diagnosis still need to undergo traditional CBT treatment for the OCD; however, the reason it is relevant to consider a PANDAS/PANS diagnosis is that additional treatment and pharmacological interventions (such as longer term antibiotic treatment, or in more severe cases, plasmapheresis, steroids, or intravenous immunoglobulin, IVIG) may be helpful. PANDAS is still being investigated, and there is some disagreement among clinicians in terms of its validity. From my standpoint, I am primarily concerned with the resolution of symptoms; therefore, when a child comes to see me for OCD treatment, regardless of if a PANDAS diagnosis has been made, I follow the same course of CBT treatment and get the same positive outcomes as those who come without it. Usually children are referred to me after receiving a PANDAS/PANS diagnosis, but sometimes I suspect a case of OCD may be rooted in PANDAS/PANS, and when this occurs, I will follow along with my typical treatment, but if after 3–4 months there is not enough improvement, I will refer out to specific pediatric neurologists who are careful not to overdiagnose the condition.

Sometimes obsessions and/or compulsions, or what may appear to be either, are symptoms of another disorder, so it is necessary to make a “differential diagnosis,” which means that a diagnosis must involve consideration of what else it could be. Therefore, other diagnoses need to be ruled out. Body dysmorphic disorder (BDD) occurs when there is a preoccupation with one or more aspects of one’s appearance that he or she perceives to be flawed; while the person is consumed with thoughts about it for at least an hour a day, the obsessions and compulsions are limited to a focus on physical appearance. With hoarding disorder, the symptoms are centered on difficulty with getting rid of possessions; there can be a compulsion to accumulate and save items, yet the focus is concerning the items (and refusing to part with them). It is also possible that the obsessive ruminations (recurring worries) are bet-ter explained by generalized anxiety disorder (GAD), which is when there is hard-to-control anxiety and worry lasting for at least 6 months that, again, causes an impairment in the person’s life. For GAD, the person must have symptoms such as feeling restlessness, being easily fatigued, irritability, difficulty concentrating, muscle tension, and so on. One can also have GAD with obsessive features without meeting the full criteria for OCD. Other anxiety disorders, such as social phobia and separation anxiety disorder, may also need to be considered, as the repetitive fears about being judged negatively or about something bad happening to a loved one can resemble obsessions. Similarly, someone with major depression may ruminate in a way that appears obsessive (e.g., guilty ruminations); however, the thoughts are more reflective of the person’s mood (mood-congruent) and not necessarily experienced as distressing. Also with depression, there tend to not be any compulsions.

Perfectionism may or may not be OCD. In some cases, perfectionism is its own problem, having little to do with OCD. Other times, it is part of the OCD, specifically the “just feels right” type. There can be an obsessive preoccupation with symmetry or order, which manifests like perfectionism, but the behavior associated with this preoccupation is really a compulsion (ritual). Finally, eating disorders can often present as OCD (e.g., ritualized eating behavior, avoidance of certain foods) but are limited to concerns about food and weight. When the disturbance of the obsessions and/or compulsions is better explained by one of these other disorders, then a different diagnosis is made. (This book focuses only on OCD; refer to http://www.iocdf.org for resources on these other topics.)

Alternatively, a child can meet the criteria for OCD and another disorder at the same time; this is called comorbidity, as both disorders are co-occurring in the child. For example, it is not uncommon for a child who has OCD to also have generalized anxiety disorder or social anxiety disorder. About 30% of children with OCD will also have an anxiety disorder, and often this is separation anxiety disorder (Boileau, 2011). Thirty-nine percent of children and 62% of adolescents will have symptoms of major depression at some point in the course of their OCD (Boileau, 2011). Tourette’s disorder occurs in 25% of children and 9% of adolescents with OCD (Boileau, 2011). The studies range when it comes to ADHD, showing between 0%–50% comorbidity rates (Boileau, 2011). Although it can be discouraging for your child to be diagnosed with OCD and another condition, the good news is that CBT is also the most effective approach for all anxiety disorders and depression, with very good rates of success. It is just important that the treatment be targeted at the OCD and the additional diagnosis.

There are times when a child presents with OCD symptoms associated with an actual fear, such as food allergies. For example, children with severe food allergies are taught to take precautions and avoid contamination; it is necessary and crucial for them to learn how to prevent exposure to their allergens. Sometimes, though, the child develops excessive and interfering behaviors that go beyond reasonable measures (as defined by an allergist) to prevent potential contamination. An adaptive reaction may become an overreaction involving extreme avoidance and ritualized behavior, and sometimes OCD can develop. Children may be afraid to touch doorknobs because of a fear of coming into contact with nuts, when in reality, there is significantly little chance that a random doorknob will have traces of nuts on it, or that those traces would even induce a reaction. Regardless of the cause of the OCD symptoms, it is treated in the same way (along with regular consultation from an allergist), and the child learns to face his fears while adhering to reasonable guidelines to ensure his safety. It’s about learning a balance (same with handwashing), as we will discuss.

Finally, OCD symptoms exist on a continuum, from mild and slightly interfering to severe and debilitating. There are also periods when it gets better and periods when it gets worse; it can ebb and flow. As we will discuss, when children are stressed, the symptoms may worsen and cause more of a problem. The priority is to have an approach for how to deal with the symptoms, so your child can learn how to not be affected or organized by the OCD. The goal is for one’s well-being to not be conditional; this is why treatment is so important.

Chapter 2
Understanding Your Child’s Experience

DOI: 10.4324/9781003237044-3

When a child has OCD, even in its mildest forms, it shapes her world. OCD creates an obstacle to being in the moment, free from anxiety and free from preoccupying thoughts or urges. Simple things become overly complicated. For example, walking out of the house can be enormously triggering, requiring a great deal of checking and rechecking that nothing will cause a fire, that things are in their proper place, and so on. Eating from a bake sale with friends can be a great challenge when your child is worrying that the baked goods are unclean and contaminated from potentially unsafe cooking practices. Doing homework can be nearly impossible for the child who feels he has to create visual lines between words (a less common symptom of OCD). Answering questions can be a challenge when doubts come up, and the child feels that she cannot know for sure if she did something or not. The dance between obsessive thoughts and urges and time-consuming rituals can seem to go on and on, requiring your child’s full attention and dedication.

Many children feel that their parents and siblings, especially ones without OCD or anxiety themselves, don’t “get it.” Parents are often roped into the symptoms, requiring negotiations, accommodations, and compromises. This can create quite a bit of tension in the home. This tension creates more stress for the child, and then the OCD gets worse. It can also be an isolating experience; he may be the only one who feels this way, the only one who perceives a threat. Sometimes the child may get frustrated with others for not sharing the same concerns or seeing the threats he sees.

When you are the parent of a child with OCD, it can of...

Table of contents

• Cover
• Half Title
• Title Page
• Dedication
• Copyright Page
• Table of Contents
• Acknowledgments
• Introduction
• Chapter 1 Is It OCD?
• Chapter 2 Understanding Your Child’s Experience
• Chapter 3 The Impact of OCD
• Chapter 4 The Treatment of OCD
• Chapter 5 Getting Help: Finding the Right Therapist
• Chapter 6 Supporting Your Child’s Treatment
• Chapter 7 Case Examples: Bringing It All Together
• Chapter 8 What to Expect on the Road Ahead
• Chapter 9 Stress Management
• Resources
• References
• About the Author