By Emily Becker-Haimes, PhD
As a pediatric clinical psychologist who specializes in pediatric obsessive-compulsive disorder (OCD), much of my time is spent teaching other clinicians to recognize how intrusive thoughts and compulsive behaviors can present in kids.
I am also the parent of a 5-year-old who recently started showing behaviors consistent with OCD. Since, our family has taken a journey through identifying the best treatments to help him manage this behavior.
How things began
We knew something was off when our curious, smart son asked us to push the elevator button for him.
Elevators were one of his great joys—he loved any building where he could take an elevator. More than one meltdown had occurred in the past because an adult had pressed the button for the elevator out of habit, depriving him of the opportunity to do so. Now things seemed to have flipped. If we didn’t press the button first before him to show it was safe to touch, he melted down.
There were other things we noticed. Like many kids, he was always a picky eater. But now, there were peculiar conversations we had to have before he would eat. Sometimes he would ask questions about whether his food was cooked or ask us to take a bite first before he would eat it.
I tried telling myself that what I was seeing was within the upper realm of normal. But he also started to come home from school ravenous and we suspected he was no longer eating the lunch served to him there. My son confirmed that some days he worried about the food’s safety, so he avoided it. He later told me he was “hiding my worry” at school.
We reached a point where I didn’t think I could consider things in the realm of “normal” anymore. The symptoms didn’t seem to be going away on their own; instead, they were getting worse. He seemed to be developing OCD.
Understanding the (often) misunderstood
OCD is often misunderstood, even by professionals. It is characterized by a combination of repeated, intrusive, unwanted thoughts (or pictures or urges) with ritualistic and compulsive behaviors.
Common “themes” of intrusive thoughts can include fears of contamination (e.g., germs, substances), but also can include themes related to aggression (e.g., fears of harming someone else in some way without wanting to), taboo sexual fears, extreme superstitions, extreme concern with religious or moral behavior, a need for symmetry, or preoccupations related to things feeling “just right.”
Common compulsive behaviors can include washing or cleaning compulsions, checking behaviors (e.g., that one hasn’t hurt someone without wanting to), repeating routine tasks over and over (e.g., rewriting), counting rituals, and touching or tapping rituals.
Families often also find themselves becoming a part of the rituals. For example, parents find that they need to answer questions in specific ways repeatedly or prepare foods in specific ways, or their child becomes very distressed.
Finding a path forward
When his symptoms were at their height, it seemed impossible to reason around his fears—probably because reasoning is unhelpful in combating OCD. The primary therapy approach for treating OCD is something called “exposure and response prevention” or “ERP.” This involves gradual exposure to fears, and intentional and gradual reduction of ritualistic behaviors, to help kids learn to manage their fears and live life without needing to rely on avoidance or ritualistic behaviors.
We tried ERP on our own. We taught our son to label his OCD thoughts as his brain trying to “trick him” into following rules that the rest of the family didn’t think were necessary. We asked him to tell us what “Tricky Brain” was saying and encouraged him to "boss back" Tricky Brain and be brave, instead of following silly rules that didn’t make sense. We created sticker charts to reward brave behavior. We did “brave practice” (exposures) to help him face his fears. I reread leading parenting books about how to limit our involvement in his OCD rituals to support his recovery. Some things seemed to help—he even began touching elevator buttons again. Other worries were stickier.
Ultimately, we made the choice to seek more support—I needed to be my son’s mother and not his therapist. We recently did some work with an OCD expert to get our son formal ERP therapy.
Progress is slow but happening. We are still in the thick of coaching him to be brave, trying to limit our participation in his rituals, trying different reward plans, getting medical appointments to confirm that there’s nothing biological we are missing, and occasionally screaming into a pillow out of frustration when things feel particularly hard.
As a professional, I am encouraged by the robust data for ERP’s effectiveness. As a parent, I know we are lucky to have recognized it and begun the process of ERP early. It can take up to 17 years for those with OCD to connect with effective treatment after symptoms begin. The easier days are starting to outnumber the harder ones. ERP is hard and it has been so worthwhile.
As a private person, I wrestled with sharing our family’s experience. I do so here in hopes our story will help others get the treatment they need. ERP experts are hard to come by. Finding a therapist adept at OCD diagnosis and treatment is hard, but it is a worthwhile treatment option that I urge other families in similar situations to consider. Just give yourself grace, and maybe keep a pillow handy in case you need something to scream into.
Emily Becker-Haimes, PhD, is an assistant professor at the University of Pennsylvania’s Perelman School of Medicine and the clinical director of the Pediatric Anxiety Treatment Center at Hall-Mercer (PATCH) program. She is a clinical psychologist and implementation scientist dedicated to improving mental health care for youth. If you or a loved one are struggling with possible symptoms of OCD, check out the International OCD Foundation for more information about OCD and how to get help.