PHILADELPHIA — Emily Becker-Haimes' son had just turned 5 years old when she and her husband began to realize his fear of bugs or his request specifically for "five hugs" felt different.

"Was this developmental normative behavior where kids benefit from routines and rituals? We tried not to overpathologize," said Becker-Haimes, a child clinical psychologist. They soon realized their son had obsessive-compulsive disorder (OCD).

Becker-Haimes is clinical director of the Pediatric Anxiety Treatment Center at Hall-Mercer (PATCH), a speciality clinic in Center City that assesses and treats children and adolescents with anxiety disorders, obsessive-compulsive disorder (OCD), tics and trichotillomania (hair pulling). PATCH is part of the University of Pennsylvania's health system.

"I'm an OCD specialist. I've been working with kids with OCD for almost 13 years," Becker-Haimes said. "It still took me some time to recognize what was going on for my own kid."

Becker-Haimes, who described herself as not one to share personal information, said she made the "really hard decision" to talk to The Inquirer about her experience as a parent of a child with OCD to help other families and encourage them to seek help quickly. Earlier treatment leads to better outcomes, she said.

The conversation with Becker-Haimes has been edited for length and clarity:

What is OCD?

It is like a cousin to anxiety disorders, and oftentimes, people have both OCD and anxiety. It's also one of the most misunderstood psychiatric conditions that exist. Its characteristic features are a combination of: obsessions, which are repeated intrusive or unwanted thoughts or images or urges; and ritualistic or compulsive behaviors, meaning repetitive behaviors that people have to do over and over again, such as the need to constantly reorganize, recheck or redo things. The key feature is the thoughts and behaviors start to take up more and more time. People experience these intrusive thoughts repetitively and have to engage in these rituals in order to feel safe and comfortable. It can take up hours and hours of people's days.

At what age does it start and how can parents recognize it?

We see OCD emerge as young as 4. The average age of onset is preteen or early teenage years. In younger kids, we often see a lot of reassurance seeking or needing to ask parents the same question over and over again or needing them to say certain things in certain ways. Parents often get drawn into their rituals. Parents find themselves walking on eggshells and feeling like they need to do the same thing in the same way over and over again for reasons that don't seem to make sense. The child is very anxious or distressed when those rituals aren't followed — that can be an early warning sign. With teenagers, some signs could be if you see them engaging in repetitive behavior, like odd showering or bathing patterns or feeling like they are getting stuck.

How did you come to recognize it in your son's behavior?

At first I thought some of it was just curiosity about how food was prepared or how electrical cords work. It took a month or two before I started to realize, these are the same questions. The answers that I'm giving don't seem to satisfy him. In fact, it's just leading to the questions coming up more and more. What we saw in our child was a lot of questions around mealtime, about whether food had been cooked appropriately. He was unwilling to eat until we were able to answer questions about food and it progressed from there to needing us to have to take a bite of the food before he was willing to eat it because he was afraid that something was wrong with it and it would make him sick. That's an example of how parents can sometimes get drawn into rituals. Sometimes OCD can look like temper tantrums. For us, that's how we saw a lot of things — as temper tantrums that seemed nonsensical and totally out of scope to what was happening.

What steps did you take to help him?

One of the tricks we often use with kids is to help them name their OCD as something they can kind of talk back to. For him, we called it 'tricky brain,' trying to boss him around. We said, 'What is tricky brain saying to you right now? What do we know is true? How can we boss tricky brain back and be brave?' We use lots of rewards. After a couple of months of trying things on our own, we reached out to another OCD expert so we could get him more specialized support. That's been really helpful for us.

Do you have advice for parents?

There's no doing this work perfectly. I know how to coach parents. I know what to do and there are moments as a parent that my head is, 'Why are you yelling at your child? This is ineffective.' It is ineffective, but you're also a human being and parenting any child is difficult. Parenting a child with OCD has a lot of stressors and challenges. Connecting with others who have gone through it or are going through it is a really important part of that journey.

We try to make kids feel better in the moment because we're parents and we want our kids to feel better. But when it's coming from a place of unhelpful anxiety or intrusive thoughts or obsessions, we're actually not helping our child, we're helping the OCD. The sooner you can try to break up some of those rituals, generally the better the course for the child.

The term 'OCD' is often misused to describe a person who is simply neat or organized. What do you think about that?

It speaks to how misunderstood OCD is. There's so much stigma in our culture. There's so much of our language as a whole that's based in 'othering' mental illness — 'Oh, I'm crazy. I'm a lunatic.' All this comes from a place of stigmatizing and othering those who are struggling with serious mental illness. We're moving in a direction where we're being more thoughtful about the words that we use. I'm hoping OCD will be the next frontier.

For caregivers interested in learning more, Becker-Haimes recommended the International OCD Foundation's website: https://iocdf.org.

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