Often stereotyped as compulsive handwashing or lock-checking, OCD actually has a gamut of symptoms that are deeply distressing—and which children often hide. This can leave parents and doctors baffled about what’s causing the distress and odd behaviours.

Once recognised, however, OCD can be treated effectively, says Queensland-based child, adolescent and family psychiatrist Dr Chris Wever, a Senior Lecturer at Griffith University and founder of the OCD program at the Rivendell Child, Adolescent and Family Unit in Sydney.

He explains how to get kids to open up, why it’s so important to treat OCD right the first time around, and what we know about its causes and comorbidities.

Children are good at hiding OCD symptoms

While some OCD symptoms like excessive hand washing, fear of germs, and repeated rituals are obvious, a lot of children with OCD work hard to “keep it under their hat,” Dr Wever says.

“They won’t tell people about their OCD, and they try and keep it hidden. Sometimes you only suspect it because you see kids doing odd things, like putting their sleeves over their hands before they open up a door, but they do it very quickly,” he says. “Or if they do some symmetry rituals, say touch something with their left hand, they’ll quickly touch it with their right to not be seen doing something a bit silly.”

While rare, some children with OCD do not have any compulsions whatsoever—but are troubled by intrusive thoughts, which are always distressing, Dr Wever says. “I joke that we never have an OCD thought that you’re having a nice time at the beach with your friends. They’re always something bad.”

Ask about symptoms

Children are often reluctant to talk about their symptoms, Dr Wever says.

“Not unless you start to ask them specific things about OCD, do you pick it up and go, ‘oh, that explains a lot.’ That’s why they sometimes get angry when you ask them to do something—they don’t want to do it because the OCD is telling them that it’s dangerous or someone’s going to get sick or die. Though they may know it doesn’t make sense, the OCD is often stronger, making them do the irrational things, often just in case something bad may happen.”

This reluctance to talk about the OCD typically comes from fear or embarrassment.

“The washing contamination, fear that someone’s going to die—that’s not too embarrassing,” Dr Wever says. “But fears that you might be a paedophile or murder someone, sometimes young kids get terrified and don’t want to tell anyone.”

Rather than asking direct questions, Dr Wever suggests framing conversations around what other people experience.

For example, you could say: “Some of my other patients have really strange thoughts that they might hurt or kill someone or bad sexual thoughts—that they may be gay when they don’t think they’re gay or they may have had sex with someone in their family when they know that they haven’t.”

“Saying, ‘do you have any thoughts you know are really silly, but they just keep on going round and round your head? Or are you doing stuff that is really silly—you don’t need to do it, but just have to do it?’ Putting it in that context makes a person much more open to talk about it.”

It can take a few visits for kids to open up, he adds.

Clinical tip

While GPs do not need to administer the Children’s Yale-Brown Obsessive Compulsive Scale, Dr Wever recommends downloading it to see the range of obsessions and compulsions children can experience.

Treatment

Treatment for moderate to severe OCD usually requires a combination of medication and about 15 to 20 sessions of cognitive behavioural therapy, not spaced too far apart.

While labour-intensive, Dr Wever says this helps get the best outcome early on, which is important so people don’t start to think they won’t get better.

He starts children on a quarter tablet of an SSRI (fluoxetine, sertraline or fluvoxamine) or an SRI (clomipramine), then titrates up the dose.

“All those medications are shown to be effective and reasonably safe in kids with OCD, with good outcomes,” he says. “And the evidence shows that with OCD, often you need to go a little bit higher than just for anxiety and depression.”

CBT should start while children are on medication and involves gradually challenging OCD symptoms, starting with the easiest ones. “And I would say at least two sessions a week so that you get momentum and traction going.”

It can be easier to treat compulsions because children can do something physical to challenge them—such as practicing dropping a biscuit on the floor and then eating it or going a certain amount of time without washing their hands, for example.

Treating obsessive thoughts can be more difficult, because people tend to think, ‘I’ve got to get this thought out of my head,’ but the more they concentrate on trying to get the thought out of their head, the worse it gets, Dr Wever explains.

But if you engage the child in conversation about one of their hobbies, the thought will likely recede.

They need to learn to acknowledge the thought, label it as OCD, but recognise that it has no power. “It’s not going to make you do anything bad,” Dr Wever says.

“You just let that thought be there and then turn your attention to other more important things in your life, like having fun or doing some homework or going for a walk or talking to your friends. And they’ll eventually not get terrified of the thought. It’s just an OCD thought, and it will eventually go away if you don’t pay it much attention.”

CBT should be paced to suit the child, Dr Wever stresses. “You have to be gentle, give control to the kid. Otherwise, they will object and find it just too hard. And then you sometimes lose them.”

Set realistic expectations

“Before you even start the cognitive behavioural treatment, kids and adults who are looking after them need to understand that it’s hard work, that a kid can’t just snap out of it. And there has to be an understanding that it’s a slow process of getting psychologically fitter, same as getting physically fitter.”

Humour is an important component, Dr Wever adds. “Laughing at the OCD takes away its power.”

Clinical tip:

When referring children for CBT, make sure the practitioner understands OCD and its treatment, Dr Wever advises. “Because sometimes I’ll get referrals that say they failed cognitive behavioural treatment. When I explore that with a family and their child, it’s been nothing more than relaxation training or family therapy or something else. It wasn’t targeted OCD work.”

What causes OCD?

OCD is known to run in families, Dr Wever says. “The genetics is fairly clear that if you have OCD, other members of your family are more likely to have OCD. Sometimes not enough symptoms for a diagnosis, but a lot of OCD-like behaviours: the child might have a mother who has to hang out clothes with matching-coloured pegs or have habits like checking the door lock twice.”

The condition also has neurobiological underpinnings. “We know there is some problem in the cortico-striatal-thalamic-cortical circuits, that they’re not working as they should,” he says. “I describe it as a brain hiccup that you can’t get rid of that anxiety or fear, even though you have insight that it’s irrational. It’s a loop that just keeps on going around and it’s really hard for people to turn off.”

Traumatic or stressful life events can sometimes precipitate OCD onset, he adds. “Whether that causes it, or whether there’s a predisposition and the stress brings it to the fore, we’re not really certain.”

In a subgroup of children, a strep infection can trigger a PANDAS or PANS-type acute OCD presentation.

“We know that’s probably a neuroimmunological problem, even though that’s a little bit controversial,” Dr Wever says. “A lot of people are still a bit sceptical about that whole diagnosis. But you see one kid with sore throat and a few days later, they’re unwell with lots of OCD stuff and you give them some erythromycin or penicillin and they get better in a few days. You go, ‘Well, I don’t think that’s a coincidence,’ especially if you see it a few times.”

Comorbidities are common

At least 60% of children with OCD have a comorbid mental health or neurodevelopmental condition, Dr Wever says. These may be secondary or additional to the OCD, and include anxiety, depression, ADHD, oppositional defiant disorder, tics, personality issues and eating disorders.

In terms of treatment decisions, he recommends starting with whatever is causing the most distress. “In my experience, a lot of the anxiety and depression gets better once the OCD is treated well.”

In some cases, however, conditions like oppositional defiant disorder or ADHD need to be targeted first, otherwise they can interfere with the child’s ability to focus on or comply with cognitive behavioural treatment.

OCD behaviours sometimes mimic those of autism spectrum disorder, but there can be subtle differences. The child with autism may have less insight and this may make CBT therapy a little harder and it may need to be tailored to their needs and understanding. Medication can also be helpful.

In autism, repetitive behaviours are often linked with dislike of change or sensory issues (e.g. the way they do their hair or brush their teeth). They are not usually associated with an obsessive thought.

Sometimes a child can have both autism and OCD, he adds.

Key takeaways:

• OCD symptoms are far more wide-ranging than the stereotypical handwashing and re-checking.
• Children often try to hide OCD symptoms and avoid talking about them due to fear and shame.
• Framing questions around what other patients experience can help kids open up.
• It’s important to treat OCD effectively from the get-go to help kids know they can get better.
• Treatment involves hard work—children can’t just ‘snap out of it’.
• Treatment for moderate to severe OCD usually involves medication and about 15 to 20 regular CBT sessions with a practitioner familiar with OCD management.
• Experts believe OCD has genetic and neurobiological underpinnings.
• At least 60% of children with OCD have a co-morbid mental health or neurodevelopmental condition. Treatment-wise, it’s usually best to start with whichever condition is most distressing.