My child was diagnosed with OCD. Now what?
“He started having these scary visions,” she says, “like a woman standing in his room with her face all messed up.”
Our new series “Now What?” looks closely at significant challenges encountered by many parents and caregivers. In this article, experts discuss obsessive-compulsive disorder (OCD).
Maybe your son adamantly refuses to enter public bathrooms and is often late for school because he’s repeatedly washing his hands. Maybe your daughter told you she has “visions” of your house burning down, or can’t sleep because she sees scary faces at her window every night.
OCD in children is usually diagnosed between the ages of 8 and 12, and about 500,000 kids and teens in the United States have it. Although some people mistakenly think OCD only involves excessive cleaning, it is a mental health disorder that can cause extreme distress to children and adults tormented by intrusive thoughts and carrying out ritual behaviors they believe they must do in order to keep themselves and others safe.
Screening and Evaluation
The process of finding out if your child has OCD can be tricky. Katy, mom of two, says finding out her son, Trent, had OCD was like peeling away the layers of an onion.
When he was in preschool, Trent frequently got so angry that he hurt Katy and his older sister.
Katy is a self-described list-maker with “backup plans for my backup plans,” so she had a lot of documented evidence to present to the pediatrician about her child’s behavior and development.
First she was referred to a psychiatry teaching clinic at the University of Pittsburgh. Trent was initially diagnosed with ADHD and oppositional defiant disorder, a condition in which a child is angry, aggressive, and impulsive.
“As we were doing the behavior-based therapy, it wasn’t sinking in because he wasn’t paying attention,” Katy says. “He wasn’t able to pay attention.”
Although many OCD sufferers also have attention deficit hyperactivity disorder (ADHD), OCD alone can be distracting because of the intrusive thoughts and the need to do a ritual behavior to prevent a catastrophe.
But Katy knew something else was wrong, something that was not being addressed by Trent’s original diagnosis. “He would organize his Legos, then dump them out and start over,” she recalls. “If you stopped him he would have extreme meltdowns.”
“He started having these scary visions,” she says, “like a woman standing in his room with her face all messed up.” Katy didn’t allow her kids to watch scary movies, so she couldn’t figure out where these images were coming from.
Demoralized and scared, Katy kept trying to find help for her son.
“He was so out of control,” she says, “sometimes we ended up in the psychiatric ER.”
Finally, things started to make sense when a doctor told her Trent’s scary visions and meltdowns were caused by OCD. He was just three years old at the time of diagnosis.
By working with Trent’s therapist and psychiatrist, Katy started to understand how to help Trent and what he needed to get better.
“Once we started realizing what his triggers were, we were able to stop things from happening,” she says, noting that avoiding those triggers has become second nature in her home. “There are still things that he can’t handle, like food touching.”
The cognitive behavioral therapy techniques she learned have become second nature as well.
“When he’s panicking, I tell him, ‘breathe through your nose, nice and slow,’” she says. She also uses a sensory technique called grounding, asking him, “What’s something you can hear? Smell? Touch? See? Taste?”
Trent has benefited tremendously from medication, but Katy says it took a long time and a lot of trial and error to find the right combination. Initially she did not want to medicate him because she had taken medication for depression as a teenager in foster care. She said it made her feel like a zombie.
“I wanted him to work through his emotions,” she says. “But then I realized that without the medication he couldn’t work through anything.”
OCD is a mental condition characterized by intrusive thoughts and ritual behaviors. It affects up to 3 percent of children and adolescents, who may also experience anxiety, attention deficit hyperactivity disorder, Tourette syndrome, eating disorders, or other mood disorders. When conditions are heavily associated with each other, they are known as comorbidities.
Although there is a strong genetic component to OCD, experts believe a combination of factors is responsible, including family history, pregnancy complications, tic disorders (such as Tourette syndrome), and even strep infection. Unlike Trent, most children diagnosed with OCD are between the ages of 8 and 12.
The unwanted and disturbing thoughts that occur with OCD might be flashes of horrific scenes, fears about germs and illness, thoughts of self-harm or hurting others, or persistent beliefs about impending calamities. They are frequently unrealistic or irrational. These constitute the obsession component.
The compulsive aspect refers to behaviors that are heavily repetitive or ritualized and often connected to intrusive thoughts. For example, a child with OCD may believe they are likely to get sick and die. When they compulsively wash their hands, they feel they have prevented their illness or death.
When these obsessions and compulsions become so intense or upsetting that they take up an hour or more of a child’s day, a diagnosis and treatment are warranted.
Supports and Therapies
Experts recommend treating OCD with cognitive behavioral therapy, which teaches the child to recognize that an intrusive thought is irrational and not real and to replace or answer it with a more helpful thought. Some children also require antidepressant medication in the selective serotonin reuptake inhibitor (SSRI) family.
Other effective therapies include exposure response prevention, which involves exposing the child to something they fear, such as shaking hands with someone, and encouraging them not to do the compulsive behavior, which might be hand-washing. This gradually helps to reduce the power of the obsession to drive their behavior. They get used to the anxious feeling and learn that it gradually dissipates if they resist the urge to do the action they previously associated with it.
Advice for Parents
When your child is first diagnosed, Katy recommends connecting with other parents who are raising kids with OCD and learning all you can about it.
“First thing is to do your own research,” she says, recommending going online and finding groups on social media that can offer support. “You name it, you can find a support group for it. Many of the groups for OCD include other conditions because it is comorbid with so many things.”
Experts echo the recommendation to educate yourself and find out how to respond effectively to your child’s behavior because the disorder is both confusing and illogical. Generic parenting strategies for typically developing children will not work. But by working with a therapist and psychiatrist, you can help your child improve.
Most important is making sure your child knows you love them unconditionally. By the time their OCD is identified, it may have caused a lot of turmoil in the family. Children need to know that their parents love and cherish them regardless of their difficulties.
American Academy of Child and Adolescent Psychiatry, Obsessive Compulsive Disorder Resource Center
International OCD Foundation, “Signs and Symptoms of Pediatric OCD,” [n.d.]
Learn MoreChapman, Kimberly, “Remote Learning Help for Children with Special Needs,” 2020
Gadzikowski, Ann, “How to Help Your Child Manage Frustration,” 2020
International OCD Foundation, “For Parents and Families: What You Need to Know,” [n.d.]
Martinez, Juliet B., “My Child Was Diagnosed with Autism. Now What?” 2020