A Child-friendly Approach to OCD
By Aureen Pinto Wagner
Maria was 9 years old when she heard a TV news item about an outbreak of hepatitis that originated at a local bakery. Long after the alarm had subsided, she couldn’t stop worrying about it. At first, she feared that she might have contracted hepatitis and began washing her hands with increasing frequency. Then she began to worry that she herself could spread hepatitis and be responsible for the deaths of others. She refused to touch or hug anyone, including her parents. This was followed by a constant fear that she’d contaminate the seats on which she sat at home, at school, and on the bus. Maria began wiping herself clean to the point that she was chafed and bleeding. By the time she came in for treatment a year later, she was spending 45 minutes in the shower, 30 minutes at the sink each time she washed her hands, and 45 minutes cleaning up after each time she used the toilet. She barely made it to school most days. Maria’s mother felt compelled to assist her daughter with her cleansing rituals and to provide endless reassurance that she wouldn’t get hepatitis. If she didn’t do so, Maria could be in the bathroom for four to six hours, and definitely wouldn’t make it to school that day.
Maria has obsessive-compulsive disorder (OCD), an often debilitating condition that affects from one to three percent of children in the U.S. A growing body of evidence suggests that neuropsychiatric, genetic, immunologic, behavioral and cognitive factors may all play a role in the development and maintenance of OCD. Over the past 15 years, the literature has repeatedly shown that OCD in children can be successfully treated with cognitive-behavioral therapy (CBT)—specifically, exposure and ritual prevention (ERP). CBT has a 65- to 80-percent success rate with youngsters, similar to the success rate with adults. ERP involves gradually facing one’s fears to test their reality while refraining from rituals. It helps people with OCD realize that their obsessive fears don’t come true and that the anxiety they experience subsides as a result of autonomic habituation.
But while CBT is widely considered the treatment of choice for children with OCD, effectiveness is contingent on overcoming a formidable obstacle: children’s reluctance to engage in ERP because they think that facing their fears without performing rituals will be too scary and impossible. The therapist and the children’s families must find a way to help the children get past the discomfort of giving up rituals that seem to protect them against overwhelming fears. To do that, I’ve devised a CBT treatment approach tailored to the special needs and cognitive capabilities of children. It’s aimed at thoughtfully cultivating treatment readiness before embarking on ERP.
Building Treatment Readiness
Children who aren’t properly prepared for how ERP works and what it entails are more likely to become ambivalent or afraid, withdraw from exposures, and refuse to do practice exercises. When they understand how exposure and habituation work, they’re more willing to tolerate the initial anxiety experienced during ERP, because they know it’ll increase and then subside.
The four steps in building readiness to undergo the added anxiety engendered by CBT—Stabilization, Communication, Persuasion, and Collaboration—are illustrated in Maria’s journey to recovery.
Stabilization comes first. When I met Maria, she was shy and embarrassed as her parents described her symptoms and their futile struggle to get her to see reason. “I know I’m washing too much,” she said quietly, “but I just can’t stop.” Her parents, like most parents seeking help for their child’s OCD, expressed a sense of urgency. They asked if they should be actively fighting the OCD by “getting tough” with their daughter and refusing to give in to her rituals. I said that our first focus was on stabilization and that it wasn’t the right time to withdraw support for Maria, who was already overwhelmed and struggling to function each day. Instead, I encouraged them to function in “survival mode”—to be flexible in their expectations, accommodate their daughter temporarily at home and school, and cut back on discretionary commitments to reduce her stress and conserve time and energy for future treatment.
In this first session, I focused on setting the foundation for treatment and getting everyone on the same page. I began with a clear description of OCD. “Everyone has worries, Maria. But when you have OCD, your brain sends you a lot of worry messages that get stuck in your mind, even when there’s no reason to be worried. It’s like it would be if you rang the doorbell and the button got stuck: the doorbell would keep ringing. OCD is like a ‘worry bell’ in your brain that gets stuck. The worry thoughts that OCD puts in your brain are called ‘obsessions.’ The things you do over and over again to make the obsessions go away are called ‘compulsions’ or ‘rituals.'”
I let Maria and her parents know that there are about one million children in America who have OCD. Maria was surprised and pleased to hear that she wasn’t the only one with OCD. She was curious to hear about other children like her. “Everyone’s OCD can be a little different—people can have obsessions about getting hurt or having bad luck,” I explained. “Sometimes, they may even have thoughts that they’ve said or done something really bad when they actually haven’t. Rituals can also be of many types, like checking things, counting, cleaning, or saying ‘I’m sorry’ all the time.”
To alleviate blame and shame and build an alliance with the family, I then discussed the current understanding of OCD as a neurobehavioral disorder. “Having OCD isn’t your fault. It’s not your parents’ fault either. It’s like having allergies or asthma—it happens to you because you’re more sensitive to it. Sometimes there are other people in your family who are also sensitive and have OCD. OCD isn’t something you do on purpose to get attention or because you’re lazy. Sometimes your parents or your teachers or friends may think that you’re just being stubborn or annoying. It’s hard for them to understand that you don’t want to do it, but you don’t know how to stop.” Maria glanced at her parents with a “See, I told you!” look, as her mother tearfully acknowledged having had such reactions.
Communication is key. Most children and families aren’t aware that the body is designed to habituate naturally to anxiety. I developed the Worry Hill metaphor to make CBT more child-friendly and prepare children for treatment, by helping them understand how exposure leads to habituation. It’s a drawing of a bell-shaped curve that graphically illustrates how anxiety rises with exposure until it reaches a peak, and then, if the child persists in resisting the urge to employ the usual anxiety-avoidance tactics, automatically begins to decline.
In our second session the next week, I explained to Maria and her parents, “Learning how to stop OCD is like riding your bicycle up and down a hill. At first, facing your fears and not doing your rituals feels like riding up a big Worry Hill, because it’s tough. You have to work hard to huff and puff up a hill, but if you keep going, you can get to the top. Once you get to the top, it’s easy and fun to coast down the hill.
“Of course, you can only coast down the hill if you first get to the top. Likewise, you can only get past your fears if you face them. You have to stick it out without doing your rituals until the bad feeling goes away. Then you’ll see that your fears don’t come true. But if you give in to the rituals, it’s like rolling backwards down the hill. You don’t give yourself a chance to find out that your fears won’t come true, even when you don’t do rituals.”
Maria listened and nodded. She liked riding her bicycle, she said, and it made sense to her.
The key to CBT for contamination fears is learning to accept the difference between unpleasant and dangerous. Maria needed to learn that although she didn’t like the “dirty” feeling involved, not washing her hands wasn’t calamitous or life-threatening. In any case, she’d never be able to completely avoid the possibility of contamination—germs are everywhere. In short, she needed to learn to live with the discomfort of possible contamination.
“Maria, you may not like the dirty feeling,” I explained, “but by touching things and not washing your hands, you’ll get used to the feeling. It’s just like the cold water in a swimming pool—you don’t like it at first, but you get used to it when you stay in it for a while. You’ll also learn that your fear of getting hepatitis won’t come true.” Maria listened thoughtfully, cringing at the mention of not washing her hands, but then nodded to indicate she understood.
Persuasion involves helping children see the necessity for change, the possibility for change, and their innate power to change. Understanding both the costs of OCD to themselves and the benefits of overcoming it convinces children that change is necessary. When I tell stories of other youngsters who’ve ridden up the Worry Hill, successfully overcoming OCD, children begin to believe that they have the power to do the same thing.
Children love these stories, but they also need to understand how difficult ERP may be. To help persuade Maria to try this approach, I explained, “Exposure may be hard, though probably not any harder than your life with OCD is right now. In fact, it’s often harder to think about exposure than it is to actually do it. Besides, the hard work of exposure at least gives you a chance to get rid of OCD; the work you put into OCD right now only makes it worse.” In this way, I help the child understand that she has the power to take charge and take control of OCD—a liberating experience—instead of letting it control her.
Collaboration makes the child a key partner in treatment. The child and family need to know that the therapist isn’t the one who’ll “fix” the child’s OCD: only the child has the power to do that. “I won’t force you to face your fears,” I assured Maria. “You and I will discuss together what you’ll do when you’re ready. But no one can ride a bicycle for you, so you’ll have to do it for yourself. We’ll take one step at a time, so that it’ll never be too scary.”
I told Maria’s parents, “For now, please keep helping Maria at home in the same way you’ve been doing. You, too, will have to learn how to let her face her fears without your help, but we’ll do that after Maria feels more confident about handling the OCD on her own.”
Upon hearing that her parents would still be helping her and that she’d be in charge of the degree of exposure she’d try to handle, Maria sighed with relief and smiled. She seemed more relaxed and ready to participate.
I deliberately don’t begin ERP until the child voluntarily expresses readiness. I gave Maria my telephone number to call within the next week and let me know if she’d like to go ahead. I received a call from her the next day. “Okay, I’m going to try it. I’m ready to beat my OCD! ” I applauded her for her decision, and reiterated that we’d work as a team to conquer her OCD, with no pressure from her parents or me. Had Maria not been ready to participate, I wouldn’t have proceeded with ERP, but instead would have spent more sessions with her and her family to understand the source of her reluctance, and to address those issues in therapy first. Sometimes children just aren’t ready for ERP, and then this phase of treatment has to be deferred until they are. In some instances, medication may reduce the severity of anxiety symptoms, thereby making the possibility of ERP less daunting to the child.
Rather than slow treatment and recovery down, building treatment readiness makes the entire process go faster. After a few sessions of readiness-building, children with moderate to severe symptoms can often begin to master OCD within 4 to 8 sessions of ERP—for a total treatment duration of 12 to 20 sessions.
Once the child has learned about ERP, it’s time for her to experience the relationship between gradual exposure and habituation. This shows her that if she can wait it out without doing her rituals, what she fears happening won’t actually come to pass. Once she experiences this, her anxiety will dissipate naturally.
The 4-step RIDE acronym (Rename the thought; Insist that you are in charge; Defy OCD by doing the opposite; Enjoy your victory) comprise the steps for successfully tackling the Worry Hill. The Defy step is the most critical, as this is the core exposure strategy. In essence, the RIDE teaches youngsters to stop, think, take control, and respond assertively to OCD, rather than default to an automatic compliance with it. The combination of the acronym, logical steps, and visual features of the Worry Hill make the ERP process easy to grasp, remember, and recall, even in the midst of anxiety.
In our third session, Maria, her parents, and I sat down together and made a list of all the things Maria was afraid to do because of her fear of hepatitis, along with a list of all the rituals she employed to deal with her fears. Using a 10-point scale called a Fearmometer, she then rated how “scary” it would be to face each fear on the list. We then created an exposure hierarchy or “Fear Ladder,” with the least scary items at the bottom of the ladder and scariest items at the top.
Toward the bottom of Maria’s Fear Ladder were ERP tasks such as reading articles about hepatitis, describing the symptoms and causes of hepatitis to her parents, and repeating the word hepatitis several times in a conversation. In the middle of the ladder were items such as touching her parents on a clothed part of their body with unwashed hands, and touching herself on unclothed areas of her body with unwashed hands. At the top of the ladder were touching her parents with unwashed hands, using only 10 squares of toilet paper instead of an entire roll, sitting on chairs after using the toilet, and asking her parents to sit in the chairs that she’d just “contaminated.”
It was time to begin the RIDE up and down the Worry Hill. Maria chose to start with an exposure exercise that she’d rated a 2: reading an article describing hepatitis. She began the RIDE with tremendous courage, determination, and trust. “It’s not me, it’s my OCD,” she said, to prepare herself for this challenge. “I’m in charge. I’m going to do what I want to do, not what OCD wants me to do!” As she cautiously began reading, I used the Fearmometer to help her actively and tangibly experience the initial rise and peak in anxiety, followed by the onset of habituation.
“What’s your feeling temperature now?” “It’s a 5,” she replied. It’s making me sort of nervous.” “Good, it’s going up!” I said. “That means you’re riding up the Worry Hill, just as we expected.”
After she read a few more sentences, I asked, “How does it feel now? What can you say to yourself now?” Maria looked less apprehensive. “I’m going to defy OCD. I’m going to stick it out until the bad feeling goes away,” she replied.
A few sentences later, she exclaimed with surprise, “Oh, wow! My fear temperature went down. I went up to an 8 and now it’s a 2, and it only took a few minutes.”
We repeated this exercise three more times to promote practice and habituation. Afterward I asked Maria to compare her expectations with the real experience. She beamed with pride. She’d done it, and it was easier than she’d expected.
Maria agreed that she’d practice this exercise three times daily at home with her parents until she no longer felt any anxiety from reading about hepatitis. She’d end the exercise when her feeling temperature was down to 2 or 3. I reminded Maria and her parents to stay with the assigned task, and not get ahead of themselves—all else should remain the same until we’d collaboratively agreed to proceed.
I then discussed with Maria’s parents how they could RALLY (Recognize OCD episodes; Ally with their child; Lead their child to the RIDE; Let go so their child could RIDE on her own; and reward and praise—say Yes, you did it!) for their child. I also set realistic expectations for recovery. Given the urgency for relief, there’s often palpable disappointment when parents hear that it may take three to six weeks before their child is appreciably better. Once they understand how treatment works, however, most families realize that recovery is a journey, not a single event. Parents need to know that each child is unique and progress can occur in fits and starts, ups and downs.
In the next session, Maria was ready for the next ERP exercise on the hierarchy. We reviewed her previous ERP experience to prime her for the upcoming one. She then went to the next item on her Fear Ladder: describing the symptoms and causes of hepatitis to her parents. They were surprised at how calmly she could talk about hepatitis, which previously had been a taboo word.
During the next four sessions, Maria slowly but surely tackled each ERP step on her Fear Ladder. The tasks got harder. Using only a limited amount of toilet paper in the bathroom, sitting on the chairs in my office after using the toilet, and hugging her parents after that were the hardest. Although she struggled at times, she was determined and always made it to the top of the Worry Hill and down again.
I helped Maria through the tougher exposures by reminding her of her previous successes, continually encouraging her efforts and urging her to “stick it out.” Frequent Fearmometer ratings helped her acutely experience her anxiety escalate during exposure—cognitively, behaviorally, and physiologically—and then dissipate during habituation, which gave her powerful, tangible feedback about how fears can be extinguished. With repeated practices, these difficult exposures became easier, until she was able to complete them successfully. She and her parents were overjoyed to be able to hug again!
At home, Maria practiced the same exercises she’d completed in session. These exercises were discussed with her parents, so that they could make the time and be encouraging as she tackled her daily practices. She wrote in her diary what she practiced each day and how it went.
Within six sessions, Maria was able to ride the Worry Hill confidently and successfully. Now, it was time for her parents to stop enabling her. With Maria’s consent, a “weaning plan” was developed to gradually extricate her mother from her entwinement in her daughter’s rituals. In the next two sessions, I coached Maria’s parents about how to carry out this plan. They gradually decreased the number of reminders, the physical assistance, and the extra checking they provided for their daughter. When she sought reassurance, they redirected her rather than providing answers reflexively. “Is that you asking, or is it OCD? Do you want us to help you or help the OCD? What do you think you need to do with that OCD thought?” They helped her remember that the uncomfortable feeling would pass if she just waited it out.
When she got distressed, they had to stick it out too, until their own anxiety passed. Maria’s parents had to climb their own Worry Hill. It was a good experience for them to be in her shoes briefly and see how hard it can be to withstand anxiety. Although challenging at the beginning, the weaning gradually became easier because it was planned and discussed ahead of time, and Maria had already experienced success with ERP. They celebrated their successes together. After eight weekly sessions of CBT, Maria and her parents reported an 80-percent improvement in her symptoms. OCD worries were now passing thoughts rather than paralyzing fears.
After the RIDE
Parents and children need to be prepared for the reality that OCD “slips” or relapses can happen, particularly at times of stress and transition. When prepared, they’re likely to have an organized and productive response, and less likely to become demoralized. Relapse-recovery training involves having realistic expectations about the future, recognizing the early signs of relapse, keeping things in perspective, and intervening immediately. I helped Maria and her parents think about relapse recovery in the context of the Worry Hill metaphor: “When you fall off your bicycle, you pick yourself up. If you made no attempt to get up, you wouldn’t get anywhere. If you want to move on, you get up, dust yourself off, survey the damage, attend to it, and get right back on that bicycle.”
Therapy sessions were tapered off to once every other week and then to once a month for the next four months. These booster sessions were described as “tune-ups” for the bicycle ride, to make sure everything was still working well. We focused on nipping OCD symptoms in the bud. Maria and her parents discussed any symptoms that were present, and we’d repeat the ERP process for each of them.
Maria maintained treatment gains well for about a year before she experienced a “slip” at the beginning of the school year, when she began to have obsessive thoughts about getting AIDS. But she was back on track within two weeks, because both she and her parents were prepared for it, knew that times of transition or stress might trigger a relapse, and were prepared to ride up the Worry Hill again without getting unduly demoralized. Maria went through ERP exercises similar to those she undertook about hepatitis a year earlier. Her parents were careful not to enable her this time, and instead of giving her mindless reassurances, challenged her to face her fears and ride the Worry Hill, which she did successfully again.
It’s been four years, and Maria is now 15 years old. She’s successfully transitioned to high school. She reports occasional symptoms and “quirky” rituals, which she’s been able to nip in the bud. She’s doing well and looking forward to becoming a journalist when she grows up. She says she’d like to write some articles to tell others how she conquered OCD, to bring hope and optimism to the many children who are still struggling.
By Martha Straus
In this case study, Wagner describes a gold-standard treatment for a child with OCD, using a nuanced and comprehensive therapeutic approach. This exceptional protocol does much more than employ simple exposure techniques: it incorporates the best elements of family therapy, coaching, cognitive-behavioral strategies, and narrative work. Integrating research evidence, clinical expertise, and the specific needs of a young child and her parents, Wagner is able to effect enduring change. I suspect the clarity of explanation and speed of results will cause the uninitiated to believe this is a simple disorder to treat, but it isn’t. This therapist’s dexterity only makes it look easy.
I was particularly struck by the ways in which Wagner modified and infused cognitive-behavioral techniques with insights into child and family development. One of my frustrations with the application of CBT in child psychotherapy has been a tendency among practitioners to overrely on cognitive capacities that exceed a child’s developmental ability, while diminishing the therapy relationship to little more than a first-session frill. In “real life” (as opposed to treatment manuals), kids often struggle with the expectations and assignments in CBT work, and have lots of other unaddressed problems. They squirm and moan, “Can’t we play now?” Real-life therapists end up shooting hoops with a Nerf ball or cleverly shuffling a deck of cards to finagle five minutes of therapeutic conversation. And some kids don’t do homework for school, so why should we expect that they’ll do it for us?
I appreciated the amount of time Wagner takes to build a treatment alliance with this fearful child and overwhelmed parents. She allows the child to control the pace of treatment (perhaps paradoxically galvanizing her into action by suggesting that it’s a hard assignment and require a long time before she’s ready!). This respectful empowerment includes using child-sized imagery (e.g., riding a bike up and down a hill), careful psychoeducation, and reassurance for the parents.
Once Maria is motivated to change, the treatment moves swiftly: she practices at home and in the office to conquer, in ascending order, all the fears she’s acknowledged. Notably, her parents also learn the narrative technique of externalization: they find out how to respond to their daughter by distinguishing her voice from the needy and controlling agenda of OCD.
Wagner rightfully notes that some kids take longer to begin exposure work. (In my experience, the actual treatment frequently uses up additional sessions, too.) She comments that more reluctant children may benefit from medication. I’d suggest they might also be helped by other treatment approaches. For example, a straightforward (and more playful) narrative strategy with children—as well as their parents—can be effective in managing those OCD bullies.
For OCD, exposure and ritual prevention strategies employed skillfully—as in this case—are clearly beneficial. Still, many problems of childhood are messy, poorly understood, and inadequately formulated. The DSM-IV is woefully inadequate in describing complex kids. Sometimes, though, a symptom constellation like OCD presents itself with diagnostic precision, and then we can turn with confidence to this strong, evidence-based practice model. For motivated children and families contending predominately with the incapacitation of OCD, the treatment plan described by Aureen Pinto Wagner is a clear guide to effective, sensitive intervention.
Aureen Pinto Wagner, Ph.D., is clinical associate professor of neurology at the University of Rochester School of Medicine and Dentistry, and a member of the Scientific Advisory Board of the Obsessive Compulsive Foundation. She specializes in CBT for anxiety in children and adolescents. She’s the author of several books and professional resources, including the children’s book Up and Down the Worry Hill; Worried No More: Help and Hope for Anxious Children; and Treatment of OCD in Children and Adolescents: Professional’s Kit. She provides in-depth CBT training workshops for professionals. Website: www.Lighthouse-Press.com.
Martha Straus, Ph.D., is a professor in the Department of Clinical Psychology at Antioch University New England in Keene, New Hampshire, and adjunct instructor in psychiatry at Dartmouth Medical School. She’s the author of No-Talk Therapy for Children and Adolescents and of Adolescent Girls in Crisis: Intervention and Hope. Contact: firstname.lastname@example.org.