OCD diagnoses could be rising among young people, experts say

Signs of OCD can emerge in young childhood, but usually between ages 8 and 12 or in late teen years.

Andy Rodgers and his son, Clive, who is just one of many youths who has struggled with obsessive-compulsive disorder (Photo by Andy Rodgers)

At dinnertime, 10-year-old Clive Rodgers used to wrap his arms around his plate because he was afraid of germs at the table.

"I was really scared, and if somebody tried to move my arm, I would, like, get really angry and stuff," says Clive, who lives in San Diego with his parents and two younger siblings.

Clive is just one of many young people who have struggled with obsessive-compulsive disorder. OCD affects about 1 in every 200 children and teenagers, which is similar to the prevalence of diabetes in this age group. The hallmarks of OCD are intrusive, unwanted thoughts and repetitive behaviors in response to those thoughts, a cycle that may cause significant anxiety and hamper daily activities.

As the coronavirus pandemic rages on, it's a tough time for any kid who has to stay home all day, studying remotely instead of going to school, unable to enjoy normal social activity with friends. Such stressors are making OCD symptoms worse in some children, even those who didn't specifically fear germs before, doctors say.

"Their rituals and obsessions are just worse because their general mental health is worse," said Suzan Song, director of the Division of Child/Adolescent & Family Psychiatry at George Washington University.

Fears of contamination and illness are generally common among people with OCD, but usually their concerns are not in line with likely threats, said Joseph McGuire, assistant professor of psychiatry and behavioral sciences at Johns Hopkins Medicine. With the coronavirus, which causes the disease Covid-19, there is actual danger present. He is seeing a "rekindling" of symptoms in many patients who received treatment in the past, and need a refresher.

"In this post-Covid world, you're hearing from the news media and scientists all saying that this is a real fear," McGuire said. "So now, it's kind of providing validity to intrusive, obsessional thoughts that have been popping in your head for quite some time."

Kids with OCD tend to be very rigid in their thinking, so when it comes to new pandemic hygiene norms, such as hand washing for 20 seconds, "there's a very fine line between safety and compulsion," Song said.

Song said that in the first month of the pandemic, some of her OCD patients actually reported feeling less anxious. Because more people in the world recognized a threat - that is, the novel coronavirus - they would say things along the lines of, "I know that other people are taking care of it, so the burden is not on me," she said. But within three months into the new pandemic reality, general levels of anxiety and depression had risen.

Signs of OCD can emerge in young childhood, but usually between ages 8 and 12 or in late teen years to early adulthood, according to the International OCD Foundation.

Emmeline Paluck of Rochester, N.Y., was diagnosed with pediatric OCD at age 7, although in retrospect, her mother, Amy Hatch, thinks she saw signs as early as age 3.

Hatch remembers Emmeline would compulsively ask her mother, "am I rolling my eyes?" And she became obsessed with her mother's safety, believing every time Hatch left the house, she would die. Emmeline also engaged in self-harming behaviors and had suicidal thoughts, her mother said.

"When your first-grader is having these issues, it's pretty terrifying," Hatch said, "and I felt very alone, and so did she, and her dad did, too."

Through therapy, Emmeline worked for years on managing her intrusive thoughts and behaviors. Now 15, with her routine suddenly disrupted by the pandemic, Emmeline said this spring she felt a huge spike in anxiety - almost like she was "back to square one." She worried she would fall back into compulsive hand washing - something she used to do when she was younger - and other behaviors.

Emmeline said her doctor increased her medication dosage and told her that other patients also struggled and needed dosage adjustments, which reassured her. "It was kind of nice to know that not everyone is handling this well, as well as I thought they were," she said.

McGuire said intrusive thoughts in people with OCD can start out small and build off normal concerns, such as, "Did I leave the coffee maker on?"

But a cycle may emerge where a person feels reassured after checking twice, three times or more, and then resorts to excessive checking in connection with other obsessive thoughts.

They form an association in their minds, such as, "I do this behavior and I feel better," McGuire said. And in some people, this leads to "magical thinking," in which they come to believe a particular ritual - such as knocking on wood three times - will keep their family safe.

There's no single cause exists of OCD, and its neurobiology is still under study. Research has found some genetic associations, but children may also develop it if no other family members have it. In recent years, scientists have found a connection between strep infections, as well as other possible factors, and the sudden onset of OCD symptoms, but these do not represent the majority of OCD cases.

Traumatic events may also trigger OCD symptoms.

Gabriella Kroener's obsessions started around age 11, after a car ran over her foot in a hit-and-run incident. It may have started with a fear of crossing the street and then spiraled to concerns about her siblings crossing the street, traffic, crowds. "The fears just grew and grew and grew," said her mother, Kim Worden.

Kim Worden and her 16-year-old daughter, Gabby Kroener, who has been diagnosed with obsessive-compulsive disorder (Photo by Kim Worden)

Before that, she had been a healthy, social child taking all honors classes, Worden said. After the accident, Gabby couldn't participate in cheerleading because of her injury, but she also withdrew from her cheer friends and became much more shy in general. She nearly failed an honors biology course because she didn't want to work with lab partners, her mother said. Gabby decided to retake the class, which ended up moving online because of Covid-19.

Gabby, who is now 16, says she became fixated on the idea that she was unintentionally harming others, even after she asked people and they said she hadn't. And she started washing her hands a lot because she feels like "I carry around those germs from hurting people."

Her worries led her to start knocking on doors and other objects made of wood - a lot. "I always felt like I was, like, going to jinx myself and I always just felt that I needed to do it, or else something bad would happen," said Gabby, who lives in New Market, Md.

About a year ago, Gabby's therapist diagnosed her with OCD but acknowledged that she was not the right fit for helping Gabby with her symptoms, Worden said. Through a Facebook support group, she learned about the telemedicine site NOCD, which connected Gabby with a specialist. It was a more accessible, affordable option than alternatives Worden had found, and the therapist has given Worden valuable advice on how to handle situations, too.

"It was a relief to hear a therapist say she can lead a successful life," said Worden, who works as a 911 dispatcher.

The Covid-19 pandemic exacerbated Gabby's intrusive thoughts, however. In recent months, she would often sit in bed all day because she feared that if she so much as passed by her siblings on the couch, she would somehow hurt them.

But just before her birthday in July, Gabby went shopping in downtown Frederick, Md., with her friends. It was the first time she had seen them since around the time her school stopped in-person instruction, in March. She bought a couple of pairs of new shorts. The social interaction and activities she used to do in public, like buying new clothes, reinvigorated her mood.

"That's really helped me to, like, see, like, the purpose in life and, like, why you should get out of your bed, because you can actually have fun, even if you have OCD," she said.

The standard therapy for OCD is called exposure and response prevention, or ERP, in which a therapist helps a patient face their fears one step at a time. Some patients with OCD also take a class of medications that are also prescribed for depression called selective serotonin reuptake inhibitors, or SSRIs. Often a combination of behavioral therapy and medication works best, Song said.

Song takes a "step ladder" approach to exposure and response prevention therapy, analyzing the different steps of a child's OCD rituals and how distressing each of them are. Patients feel most comfortable tackling aspects of rituals associated with the least distress - the ones they are least upset about stopping - and working up from there, Song said.

Both Song and McGuire counsel young patients to view OCD as a force separate and outside of themselves that is causing anxiety and disrupting their relationships with others, and to "stand up" to it. "This is the OCD talking. It's like a bully that's talking. And we have to fight back," Song said.

As part of her therapy, Emmeline used to keep a "worry jar" for her fears, which often involved people dying. She would tell her mother what was bothering her, Hatch would write it down and the two would deposit the slip of paper in the container. Once, Emmeline was so disturbed by a thought that she burned the paper. She stopped using the jar when she was about 9.

There are many misperceptions about OCD. Emmeline gets annoyed when it's used inappropriately, such as "I have to clean my kitchen, I'm so OCD." Emmeline's mother said she and her daughter are passionate about being as open as possible about OCD.

"You wouldn't hide the fact that you had, I don't know, diabetes or arthritis or any other chronic illness," Hatch said. "Why should we hide mental health under this stigma?"

Since therapists are largely seeing patients through video chat programs now, they rely on parents more than ever to help kids practice therapy techniques and confront flare-ups of unwanted behaviors. Often, children will involve parents in OCD-related behaviors, looking to them for validation. Song's advice for parents helping kids with OCD is to have "compassion with limits," and not engage in power struggles.

In Clive's case, his symptoms started in late January and early February, and his parents tried for more than a month to find professional help.

Andy Rodgers, his father, said Clive, who is usually shy and mild-mannered, would suddenly become combative and angry when his father would try to talk him out of his OCD-related rituals.

"I had a few nights where I kind of held it together until we separated rooms and then I cried," Rodgers said. "As a parent, it's the most natural thing in the world, if your kid's in pain or uncomfortable, you want to rescue them and you want to pull them out of that."

Eventually, they found a therapist through NOCD, the same telemedicine site Gabby uses. Exposure response therapy has changed Clive's life, Rodgers said, and created "a family space of compassion and understanding."

Rodgers now sees himself as a "workout partner" for Clive, providing encouragement and positive reinforcement as his son works on curbing OCD behaviors.

In what his father told him was like "the last level of a video game," Clive visited a messy store that had greatly upset him before the pandemic, and spent 15 minutes inside. While taking appropriate coronavirus precautions, Clive successfully touched a variety of objects, and even sat on the floor in a dirty corner. Now, he's working on curbing his compulsion to look at the sun outdoors.

Clive has never met anyone else with OCD, but if he did, he would first reassure them that their secret is safe with him, because he had wanted to keep his condition a secret, too ("I was really mad when my brother told my sister," he said).

Then, he would say that exposure response therapy can be hard, but really helps. He doesn't guard his plate from germs at dinner anymore.

"Even when it's really bad, it just keeps getting less and less and less and less until you're just, it doesn't really bother you anymore, only sometimes," Clive said.