Talking Back to OCD

The Program That Helps Kids and Teens Say "No Way"—and Parents Say "Way to Go"

The Guilford Press

Contents

What Is OCD?

When families come to me distraught over the fact that they haven't been able to get rid of a child's or teenager's OCD on their own, I start by telling them that OCD does not respond to sensible solutions because it is not an ordinary problem of daily life. Kids with OCD are normal kids up against a not-so-normal challenge. OCD is an illness, and, like any serious illness, it makes life harder for everyone in the family. The child or teenager feels miserable about not being able to get control over the "silly ideas" and "crazy behavior" of OCD. Parents worry about the future and feel guilty that they don't know how to help. Often everyone is frustrated with each other.

The trouble is that it can be difficult to view OCD as an illness in the brain. Kids with OCD are well aware that their obsessions and compulsions make no sense. That recognition makes them think it should be a simple matter to talk themselves out of listening to the obsessions or acting on the compulsions. Their parents, too, know their kids aren't "crazy," and so they try commonsense means to get rid of OCD. They may try reasoning with the child, cajoling, or even disciplining the child. Upset by the pain their child is feeling, they give her reassurance, comfort, and lots of affection. When none of this eliminates OCD, everyone in the family feels helpless and increasingly hopeless, and OCD thrives when the blame game gets going.

A shift in perspective works wonders. OCD is not about good or bad behavior. When you understand that OCD is a true brain illness, you realize that having it is not a matter of choice and resolving it is not a matter of willpower, though it does require good intentions. OCD is no more a matter of choice than is diabetes or asthma. And, as with diabetes and asthma, there are strategies for making OCD better, for living a normal life that is not constantly restricted by the illness. This view of OCD does, however, have its limits. Although diabetes or asthma often requires family members to adjust the way they think, feel, and act, these illnesses do not cause the child to think, feel, and act differently than before the disease struck. OCD does, and the typical family of a child with OCD can't help being frightened by these changes and feeling at a loss to deal with them.

This is where another perspective comes to the rescue, one that professionals helping kids with OCD have adopted almost universally. Think of having OCD as like having a bad case of mental hiccups—the term aptly assigned to OCD by Judith Rapoport in her groundbreaking book The Boy Who Couldn't Stop Washing. No matter how hard your child and you try to stop them, the embarrassing and senseless obsessions of OCD keep popping up, and your child keeps feeling as if he must perform certain repetitive actions in response. Like the hiccups, OCD may not seem so bad at first. But as time goes on, the hiccups get harder and harder to live with. If you had hiccups that not only refused to go away but got worse, it probably wouldn't be long before you felt as if you were trying to fit in breathing, speaking, eating, and every other function between hiccups. As you undoubtedly know, that's the way kids and families challenged by OCD often feel. You may feel like you're squeezing your ordinary lives in around the demands of OCD, wherever OCD will let you.

WHAT TO SAY TOO YOUR CHILD ABOUT OCD

"OCD hiccups bugging you again?" Remembering that OCD is an illness—not some personal flaw, naughtiness, or craziness—and responding skillfully whenever you see that your child is being plagued by obsessions or compulsions will go a long way toward changing everyone's perspective about OCD.

Billy is a 9-year-old third grader who came to us with severe OCD. Billy's father had had OCD as a child and, as an adult, recognized it right away, so he brought Billy in for treatment. Nonetheless, Billy felt to blame for not being able to control OCD, saying angrily, "I can't make my mind do what I tell it." Once OCD was renamed as a hiccup in his brain, not something he was responsible for, Billy brightened up considerably, asking spontaneously, "OK, how do I make these stinking hiccups stop?"

The first step is to understand what OCD is and how it operates. With that knowledge as your foundation, your child and you will learn how to respond skillfully to obsessions and compulsions so that they get weaker and weaker and you all get your lives back.

OCD Is Everywhere

One of the most important things for all of you to know is that you're not alone. As is the case with other medical illnesses, such as diabetes and asthma, kids with OCD are all over the place. The latest statistics tell us that as many as 1 in every 200 children or teenagers has OCD today—about the same number of kids who have diabetes. That means that four or five kids with OCD are likely to be enrolled in any average-size elementary school. In a medium to large high school, there could be 20 students struggling with the challenges imposed by OCD. In adults, OCD is third among the most common forms of mental illness, almost three times more common than schizophrenia. Most of these adults had OCD as children, and back then they didn't have access to programs like this one. (If they had, maybe they would not be so troubled by OCD as adults.) In children and teens, OCD is also among the more common forms of mental illness, about a sixth as common as ADHD or depression, for example.

Knowing that your family is not alone in having to deal with OCD should make it easier for all of you to keep working together to help the child with OCD get better. You can help your child understand this by saying something like what appears in the sidebar.

WHAT TO SAY TOO YOUR CHILD ABOUT OCD

"Did you know that there are other kids around you at school who are struggling with OCD just like you? In fact, the student sitting next to you in class is about as likely to have OCD as diabetes. Four or five kids with OCD are likely to be enrolled in any average-size elementary school. In a medium to large high school, there could be 20 students dealing with OCD. Normal kids have diabetes; normal kids have OCD. You're just sick—temporarily. You're not so 'different' after all!"

Knowing your family isn't alone in this struggle helps for several reasons. First of all, there's comfort in numbers. A problem that affects hundreds of thousands of children in the United States alone can hardly be viewed as the exotic problem it may seem to be close up, in isolation. Throughout this book you'll meet many people who are sharing your challenges, and if that's not enough to ease your mind, a doctor who has seen many children with OCD will be able to assure you that you're in good company. Viewing OCD from this broad perspective may be just what the whole family needs to step back, take a deep breath, and begin the work of fighting back—together.

Second, there's help in numbers. If OCD is so widespread, then there is a huge number of other people who can recommend strategies they have found successful, warn you of pitfalls they've stumbled into, and offer emotional support when you need it. Kids who are successfully fighting OCD characteristically demonstrate enormous courage and generosity in sharing their experiences to help others. A perfect example is the kids (and their parents) whose stories have enriched our understanding of how OCD works and how to beat it and whom you'll read about throughout this book. Your doctor or therapist should be able to refer you to local sources of ongoing support, and the Resources section in this book contains a list of organizations.

One of the cool things about going to the clinic was the chance to meet other teenagers with OCD and their parents. We'd sit in the waiting room and tell stories about what OCD was doing and how we'd found ways to beat it at its own game using the approaches we learned. Once Chad was really getting better, what was really neat was to listen to him telling other kids who were just getting started, and weren't quite sure they wanted to buy into it, how great it was to be able to put OCD aside and get on with stuff he liked doing instead. Seeing the other kids brighten up really made him feel good about himself and what we were doing.

—Maggie, mother of 14-year-old Chad

Third, where the numbers go, the research follows. Scientists today know more about OCD in kids than about just about any other mental problem except attention-deficit/hyperactivity disorder (ADHD). That's due in part to the ability and willingness of kids with OCD to describe their experiences and also participate in research projects. We've found in our research, in fact, that kids and parents are often smarter and more informed about OCD than mental health professionals are, and this has led to dramatic strides in advocating for better treatments. But recognition of the large number of kids and adults harmed by OCD has led to studies at Duke University, the University of Pennsylvania, and other research centers around the world. We now have a wealth of new information about what causes OCD (see Chapter 3), and—the best news of all—we have made huge strides in treating it (see Chapter 4). So much so, in fact, that we can realistically hope to reduce the rates of OCD significantly among children and adults in the not too distant future.

OCD Is Sneaky

Probably the greatest benefit of realizing you're not alone with OCD is that it gets OCD out in the open as an illness. OCD is not a part of who your child is, nor did you do anything to cause it. Once OCD is revealed as an illness, it becomes obvious that it's not the child's or parents' fault, any more than diabetes would be someone's fault. It is your responsibility to address OCD skillfully, however. Relieving themselves of guilt makes it much easier for most families to move from what hasn't worked to what does work. A survey of 5,000 high school students done in the late 1980s found 18 students who had OCD, but none of them had been identified as having OCD, including the 4 who were seeing a psychiatrist or psychologist. OCD is a bit more likely to be diagnosed these days, but nowhere near often enough, in part because many kids don't want to tell anyone they have a problem. This means that the 1-in-200 figure we quoted earlier may be just the tip of the iceberg, with OCD being even more common than we imagined. One scientist, in fact, called OCD a "hidden epidemic" because so few young people who have OCD are identified as having it and even fewer receive appropriate treatment.

It's not surprising that OCD often remains hidden, because the disturbing thoughts, pictures, or urges that we call obsessions and that pop up in the mind for no apparent reason might make an odd kind of sense to the child at first. Children have incredible powers of imagination, and fantasizing is a critical tool they use to understand and adapt to a large and sometimes scary world. In addition, lots of behaviors that are out of whack in OCD are pretty normal in other contexts: washing hands before dinner, insisting on a nightly bedtime story, arranging dolls, or, for teens, spending a fair amount of time getting dressed and grooming. It might be difficult at the start for a child to see the difference between obsessing about getting germs in the bathroom that she fears she will pass on to her mother and worrying about the fact that the bathroom at school really can be disgustingly dirty. Washing her hands a lot to get rid of germs when it really isn't necessary—the repetitive actions we call compulsions —might not seem much different from the ordinary routine of washing your hands before dinner. After all, many people do wash before dinner, so why should she believe, at least at first, that washing her hands isn't a sensible thing to do?

WHAT TO SAY TOO YOUR CHILD ABOUT OCD

"OCD tries to trick you into thinking that what it wants you to do makes sense. You know it doesn't, but it can feel pretty real, especially when you're in the middle of it. Pretty soon you're going to find out that nothing about OCD is real except that it bugs you and that if you don't do what OCD says, it'll leave you alone."

OCD made me wash my hands whenever I would touch something that felt dirty or germy. At the beginning, I just thought OCD was something I had to do to keep safe because my little brother had leukemia and we all had to wash our hands a lot, but I realized real fast that it was more than what other kids did. Even my little brother didn't worry or wash his hands as much as I did.

—Susie, age 11

At the beginning, many children might in fact view the rituals or compulsions as offering pretty helpful advice and warnings. When children perform rituals, the frightening or disturbing feelings that accompany their obsessions usually go away for a little while. OCD can be trusted, the child thinks. But wait. As time goes on, the young girl just described felt like she had to wash her hands not 5 or even 10 times a day but 20, then 30, then 50. Or she felt compelled to wash her hands not just after going to the bathroom but after touching any other person, eating food, or riding in a car. Before she and her family knew what had hit them, OCD was in control of the child's waking hours, and everyone felt worse and worse—even though by that time Susie had no doubt that OCD made no sense at all.

In short, OCD fools kids into thinking the whole scheme makes sense—after all, washing one's hands is the right thing to do to rid them of germs. It says so on TV. Even when kids know that OCD makes no sense, which is true of most kids most of the time, this realization only makes them keep silent for fear of being labeled "crazy." Or they have tried so valiantly yet unsuccessfully to bounce OCD out of their brains that they feel hopeless, stuck with OCD forever. Or the intrusive thoughts that torment them feel shameful and fill them with guilt; they don't dare admit to being as "bad" as their thoughts tell them they are. The result in all cases is that it might take parents months, even a year or two, to figure out that they have a child who needs help. (Adults with OCD have the same reactions. Those who first notice OCD in their 20s often don't ask for help for 8 or more years!)

WHAT TO SAY TOO YOUR CHILD ABOUT OCD

"Just because OCD makes you feel bad—and sometimes feel bad about yourself—doesn't mean you are bad. The thoughts that make you feel crummy are coming from OCD. They're not part of who you are—a good, smart, neat kid who just happens to have OCD."

When it started, I had this thought that if I looked at a guy's butt, it meant I wanted to have sex with him, so I tried hard not to look. It didn't take long before the other kids asked me why I was always looking at the floor or staring off somewhere else. Since I was too embarrassed to tell the truth, I told them I was shy or that the sun or lights bothered me. Eventually, no one asked anymore. They just ignored me. Before I found out that this was OCD, I lost all my friends. I felt so alone.

—Anna, age 13

The messages that are sent by the illness called OCD aren't true, just as many other thoughts that pop up in your mind every day aren't true. But unlike these other brain moments, OCD thoughts won't go away by themselves. That's why we call them brain "hiccups." They hang around and around and around, provoking unpleasant feelings and rituals as the child desperately tries to get back in control. For example, a typical OCD thought tells a child that her mother will get sick if she doesn't wash her hands 50 times each day, with the consequence that the child feels terrible—frightened, guilty, forlorn—even as she washes her hands over and over, knowing it makes no sense. Mom is just fine. But OCD is never satisfied. Like an ogre with a great big hungry mouth, it never gets enough to eat. The child who faithfully fulfills OCD's demands today is rewarded tomorrow with even tougher tasks to complete. In our experience with many hundreds of kids with OCD, it is painfully clear that nobody hates OCD more than the young men or women who have it. OCD is never on their side, and the fact that they are capable of realizing that gives children a huge boost toward being able to boot OCD out of mind once and for all.

OCD Doesn't Belong Here

Most children—and their parents—fully understand that what OCD is telling them is untrue and unfair. But how do they reconcile that fact with the fact that OCD can look for all the world like bad behavior? Many families plagued by OCD have great difficulty separating the disorder from the child victimized by it. This is why some parents discipline their children for not obeying their orders to "just stop it." It's why some children give up their lives to their compulsions in a short-term bargain to halt the obsessions that ultimately seem so goofy. But if we look at the origins of the words "obsession" and "compulsion," it's easy to see that OCD can and should be viewed as something outside the child's personality that has invaded the child's life territory. "Obsession" comes from the Latin word obsidere, which means "to besiege," and "compulsion" comes from the Latin compellere, which means "to compel." What force is performing these actions? What is waging a siege against the child with OCD? What is compelling the child to perform senseless rituals over and over, day after day? Certainly not the child. It's the brain blips we call OCD.