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 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.
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.
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.
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. 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.
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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.
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."
Maria chose to start with an exposure exercise that she'd rated a 2: reading an article describing hepatitis. She began 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.
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.
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.
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.
This blog is excerpted from "The Worry Hill" by Aureen Pinto Wagner. The full version is available in the May/June 2008 issue, The New Face of America: Psychology Takes on the Immigration Debate.
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Tags: 2008 | anxiety in children | Children | Children & Adolescents | children with ocd | kids | obsessive compulsive | obsessive compulsive disorder | ocd | ocd in children | ocd symptoms | people with ocd