Kids and OCD: The Parents' Role in Treatment
Teaching families how to help kids fight back
By Linda Spiro, MS
When you're the parent of an anxious child, you assume that your role is to provide reassurance, comfort, and a sense of safety. Of course you want to support and protect a child who is distressed and, as much as possible, avert her suffering. But in fact, when it comes to a child with an anxiety disorder like Obsessive Compulsive Disorder, trying to shield her from things that trigger her fears can be counterproductive for the child. By doing what comes naturally to a parent, you are inadvertently accommodating the disorder, and allowing it to take over your child's life.
That's why parents have a surprisingly important role in treating anxiety disorders in children. The gold standard in pediatric OCD treatment is a form of cognitive-behavioral therapy called exposure and response prevention. The therapy involves "exposing" the child to her anxieties in a gradual and systematic way, so she no longer fears and avoids those objects or situations; "response prevention" means she is not allowed to perform a ritual to manage fears. Because parents become so involved in their children's OCD, research has shown that including parents in treatment and assigning them as "co-therapists" improves effectiveness.
In therapy the child, parents, and therapist create a "fear hierarchy" in which they collaboratively identify all of the feared situations, rate them on a scale of 0-10, and tackle them one at a time. For example, a child with fears about germs and getting sick would repeatedly confront "contaminated" situations and objects until her fear subsides and she can tolerate the activity. The child would start with a low-level anxiety item, such as touching clean towels, and build to more difficult items such as holding half-eaten food from the trash. Response prevention involves preventing the child from performing the behavior that serves to decrease the anxiety. For example, a boy with a fear of germs would have to abstain from washing his hands after touching the doorknob, or the garbage. Through gradual exposure he learns that what he "fears" usually does not come true, so that new learning can take place. It also teaches him that he can tolerate uncomfortable feelings.
Much of the work in CBT involves practice outside of sessions, requiring parents to participate in the treatment. Children are assigned "homework" and asked to continue practicing facing their fears in a variety of settings. Since exposure and response prevention evokes anxiety and requires considerable follow-up, family involvement and support is essential. For a child with a fear of contamination, the parents may encourage him to do the dishes, or to become a "human vacuum cleaner," which is what clinicians call picking up small scraps of garbage from the carpet. A child with fears of vomiting might write a comic about "Vomit Man" in session with his therapist, and then practice reciting it aloud to his parents.
But parents have a bigger role than backup when it comes to practicing exposures at home. Since OCD can be a crippling disorder for children, relatives often become excessively involved in a child's symptoms in order to help the child function. For instance, many children with OCD, as well as other anxiety disorders, seek constant reassurance from family members. Reassurance-seeking is used by children to manage fears, and many parents provide it, even though it's excessive, in order to make their child feel better in the moment. Reassurance-seeking is one of the many forms of "family accommodation." This phenomenon refers to the manner in which family members participate in the rituals the child uses to manage his anxiety, as well as how they modify personal and family routines in order to accommodate him.
Many children suffering from OCD are unable to tolerate uncertainty, and they ask their parents to provide them with definitive answers. For example, it is not uncommon to hear an anxious child ask their parent "Am I going to get sick from eating this?" or "Is everything going to be okay?" although the answer may have already been provided several times. Parents can easily become frustrated because they feel like no matter how many times their child's questions are answered, they are never satisfied. Answering their child's questions becomes an endless cycle, and the child never learns that he can indeed tolerate the uncertainty.
There are many other forms of accommodation. Families may stop taking vacations, going out to restaurants, or even change the way they speak in order to avoid anxiety-provoking situations for their child. They may avoid particular names, numbers, colors, and sounds that trigger anxiety. "OCD can be very overwhelming to families and can really interfere with how families can normally function," said Dr. Jerry Bubrick, Director of the Anxiety and Mood Disorders Center. "The family decisions are made to accommodate the anxiety, rather than the best interests of the family."
To the family of a patient we'll call John, a 12-year old boy who was treated at the Child Mind Institute for OCD, this is all too familiar. John had fears about contamination and gaining weight and thus he avoided any food that was considered "unhealthy," took up to seven showers a day, and didn't play with his siblings or hug his parents in the belief that they were contaminated. "We didn't go out to a restaurant for months," said John's mother. "He didn't have any friends come over. We didn't have any of our friends come over. Our house was a safe place."
But accommodating John's anxiety didn't stop it from taking over more and more of his life. John's mother described the peak of his OCD as an extremely challenging time for her family. "It was really hard because it's like we had lost our son. He was so trapped in the OCD. We couldn't physically touch him. There was no spontaneity anymore. We couldn't even sit across the table and talk anymore."
While the parents who accommodate their child are well intentioned, family accommodation is known to reinforce their child's symptoms. Since anxiety is maintained through avoidance, family members who accommodate their child are causing the symptoms to become even more fixed. "Before I knew what accommodation was, I thought I was helping," said John's mother. "I was heartbroken when I found out the definition of accommodation. I was devastated to know I was feeding the OCD instead of helping John."
Naming the child's OCD is one way to reduce the stigma associated with it, and makes the child feel like the anxiety is not who she is. For example, a child may name her OCD "The Bully" or "The Witch." John's mother continues: "Divorcing the OCD from John has been huge. Now the family has a common enemy, everyone is in on the battle. Before it was an unnamed invader. Now we know who we're fighting."
Through treatment, parents learn new ways to respond when their children get "stuck" and how to encourage their child to rely on coping skills or to "boss back" their anxiety, instead of relying on their parents to help them through it. The children eventually become much more independent, and the parents may start to realize that anxiety is no longer in charge of their families.
Grandparents and siblings can also become involved in family accommodation, although they are not typically included in treatment as regularly as parents are. "Since grandparents and siblings are more a part of the child's outside world, they may be more likely to accommodate because thy want to maintain peace," said Dr. Bubrick. "They should be a involved in the treatment so they don't undermine it."
Through treatment, family members learn to help their children face their fears instead of avoiding them. Instead of comforting the child, it becomes the parent's job to remind him of the skills he has developed in treatment and to use them in the moment. "Now I'm helping John and I'm not feeding the OCD," said John's mom. A lot of that is letting John know that he has strength to fight the OCD. Reminding him of the strategies instead of making the world better for him."
Published February 26, 2013