“Even among skilled clinicians, misconceptions about obsessive-compulsive disorder or OCD can delay diagnosis and treatment,” explains Carla E. Marin, Ph.D., a licensed psychologist and Assistant Professor at Yale School of Medicine.
With common sayings like “we’re all a little OCD” and representations of OCD that center on germs and handwashing, getting a clear picture of the disorder and its impact can be understandably difficult for patients and primary care providers.
To pull back the curtain on misconceptions and explore the realities of pediatric OCD, we asked Dr. Marin to walk us through what primary care providers should know about the disorder. While OCD is a complex condition that often requires referral to a CBT therapist for effective treatment, primary care providers can play a crucial role in recognizing its signs and initiating care.
What Pediatric OCD Really Looks Like
An OCD diagnosis is distinguished by the presence of frequent intrusive thoughts and/or compulsive behavior. While the DSM indicates that an OCD diagnosis can be made with one or both of these symptoms present, in Dr. Marin’s experience, “both are always present but may be missed because the compulsive behavior manifests as avoidance.”
As with all mental health disorders, OCD symptoms must also lead to impairments in daily life, such as problems in school or with peer relationships.
Intrusive thoughts: what’s normal and what isn’t
“Having occasional intrusive and unwanted thoughts is generally normal,” explains Dr. Marin. “But most of us don’t linger on these thoughts, and they don’t consistently change our behavior”
For those with OCD, however, intrusive thoughts are frequent and recurring, produce anxiety, and can lead to compulsive behavior. For example, when a patient with OCD sees a knife, they might think about hurting someone in their family, even though they do not want to hurt anyone. Or a patient might see an object, like a thumbtack, and be afraid they are going to eat it.
In OCD, intrusive thoughts may also feel gross or shameful—and patients may be hesitant to admit their thoughts and/or use repetitive, compulsive behaviors to escape or avoid them.
Different ways “compulsive behavior” may manifest
Common examples of compulsive behavior in OCD include excessive handwashing or showering, obsessively cleaning or organizing, or needing to always put things in a certain place or complete activities in a specific order.
While compulsive behavior does manifest this way for some OCD patients, it can also look quite different.
Avoidant behavior, which is very common among OCD patients, may be harder for clinicians to spot. For example, if a patient has intrusive thoughts about eating thumbtacks or other objects, they might intentionally avoid those objects, making sure they are always out of sight. Or if a patient has intrusive thoughts about stabbing someone with a pen or pencil, they might insist on only using a computer or tablet for their homework.
The need to confess can also be a compulsive behavior. For example, an adolescent might have an unwanted sexual thought about another student in their class and then immediately feel the need to unburden themselves and confess to someone, such as by texting a parent or caregiver. While this might sound “normal” in some cases, in OCD, the pattern is repetitive, with patients compulsively “telling on themselves” and unable to sit with their own thoughts.
OCD Diagnosis and Evidence-Based Treatment
To assess the severity of OCD symptoms, Dr. Marin recommends the Yale-Brown Obsessive Compulsive Scale (YBOCS). The pediatric version of the scale—particularly the 2011 revision that includes questions to identify avoidant behavior—is called the CY-BOCS-II and can be used by clinicians treating children ages 6 to 17. There is also a self-assessment version of the scale for use by patients and caregivers.
ADHD and Tourette syndrome (TS) are common comorbidities with OCD that Dr. Marin sees in her practice, and she also advises screening for both when assessing OCD.
Once diagnosed with OCD, the best evidence-based treatment is exposure and response prevention therapy or ERP. Administered by a trained therapist, ERP involves intentionally eliciting intrusive thoughts and guiding the patient to change their response. For example, during ERP, a child who has intrusive thoughts about accidentally swallowing thumbtacks might sit in front of a box of thumbtacks while a therapist coaches them through their reactions.
In cases where ERP alone is not successful, patients may need a medication consult and treatment with an SSRI approved for pediatric use, like sertraline.
How PCPs Can Support Families of Children with OCD
Primary care providers can play a crucial role in guiding families toward effective resources and treatment for OCD. Dr. Marin suggests sharing the following organizations with parents:
- The International OCD Foundation: Provides comprehensive resources about OCD and includes a directory of clinicians trained in ERP.
- The Association for Behavioral and Cognitive Therapies: Offers resources for parents and lists therapists specializing in cognitive-behavioral approaches, including ERP.
- The Anxiety and Depression Association of America: Features resources and clinician directories for families seeking help for anxiety-related disorders, including OCD.
When explaining OCD to children and their families, using simple and relatable language is key. Dr. Marin recommends framing OCD as “a loud and annoying song that keeps playing in your head over and over again.” For example, she explains:
“Some kids might keep thinking that they are ‘bad people’ because they had a [bad] thought. In order to make the thought go away, they feel compelled to ‘confess’ to their parent or caretaker to be reassured that they are in fact ‘not a bad person.’ But here’s the thing—this is the brain tricking you into believing these thoughts! The best thing [a] child can do is to resist the urge to confess, and this can be done with the guidance of a clinician who understands OCD and is trained in Exposure and Response Prevention.”
The Caregiver’s Role in Treating Pediatric OCD
According to Dr. Marin, in pediatric OCD, “family members and loved ones can often get pulled into the cycle.” For example, an adolescent who is compelled to confess their thoughts might constantly seek reassurance via text from a parent. Thus, when OCD is diagnosed and treatment begins, parents and caregivers may also need to learn to change their own behavior, following the recommendations of their child’s therapist.
RESOURCES:
- For more information on OCD diagnosis and guidance on using the CY-BOCS-II scale, Dr. Marin recommends this resource from the International OCD Foundation.
- The International OCD Foundation provides resources for parents and caregivers of children with OCD.
- Not all intrusive thoughts are indicative of OCD. This research-based worksheet reveals some of the most common intrusive thoughts and their reported frequency among those who do not have OCD.
- ADDitude Magazine delves into the relationship between OCD and ADHD, including how the two comorbid conditions may complicate diagnosis and treatment.
