Obsessive-Compulsive Disorder (OCD) 101

Many people casually say they’re “so OCD” when they like things neat or organized, but obsessive-compulsive disorder (OCD) is much more than a personality quirk or preference. OCD is a real mental health condition that can seriously affect a person’s daily life, relationships, learning, and emotional well-being. And it can be even trickier for children, especially children with co-occurring developmental disabilities.

For more information on what OCD is, how it’s diagnosed and treated, and all the ways we can support children with OCD, we spoke to Ogechi “Cynthia” Onyeka, PhD, assistant professor in Department of Psychiatry and Behavioral Sciences at Baylor College of Medicine; Madelaine Davidson, LMFT, a licensed marriage and family therapist at The Center for Anxiety and OCD; and Harper Word, a college student at the University of Missouri who also has OCD.

Obsessive-compulsive disorder is one of the more common mental health conditions affecting school-age kids and teens — about 2.2 million children in the United States have OCD — but it’s often misunderstood or missed altogether. Because OCD can look different in every child, many families may not realize that the worries, rituals, or behaviors they’re seeing could actually be signs of OCD.

OCD can cause intense anxiety and distress for kids and teens. Children with OCD experience obsessions and compulsions that can become overwhelming, time-consuming, and difficult to control. These thoughts and behaviors can interfere with important parts of daily life, including school, extracurricular activities, friendships, family routines, and even basic self-care.

Dr. Onyeka explains that there is growing research and awareness around OCD, even though many people still don’t talk about it openly. OCD affects about 1–2% of the population — meaning millions of people — yet it often goes unrecognized or misunderstood, partly because of stigma. She notes that if adults struggle to talk about it, it can be even harder for children, which is why early support and awareness matter.

Is OCD an anxiety disorder?

For many years, OCD was grouped together with anxiety disorders because anxiety is such a big part of what kids and adults with OCD experience. Today, OCD is not classified as an anxiety disorder in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5); it is now placed in its own category: Obsessive-Compulsive and Related Disorders, which also includes body dysmorphic disorder (BDD), hoarding disorder, trichotillomania (hair-pulling disorder), and excoriation (skin-picking disorder). This classification highlights the unique features of OCD that go beyond anxiety, such as repetitive, ritualistic behaviors and intrusive thoughts. OCD is also associated with eating disorders in teens, and it is important to treat the underlying eating disorder as well.

The key distinction is that OCD-related anxiety “is triggered by intrusive thoughts and maintained by compulsions, whereas in anxiety disorders, worry tends to be more general, persistent, and tied to real-life situations rather than specific obsessions.”

The main characteristics of OCD are obsessions and compulsions. Dr. Onyeka explains intrusive thoughts as “thoughts that you don’t want — distressing thoughts that keep popping up and are very hard to deal with, cause a lot of anxiety, and are usually (although not always) accompanied by repetitive behaviors or mental acts, also known as compulsions, that are only being performed by the child to reduce the distress that those thoughts cause.”

Obsessions

These intrusive thoughts tend to happen over and over again and can feel impossible for a child to control. Kids with OCD usually do not want these thoughts and often find them upsetting, scary, or confusing. OCD is typically diagnosed when the obsessions and compulsions become so frequent and time-consuming that they start interfering with daily life — including school, friendships, family routines, activities, and emotional well-being. For many children, symptoms gradually become more intense over time if they are not recognized and treated.

One helpful way to understand the difference between OCD-related thoughts and everyday thoughts or habits or obsessive personalities is through the idea of something being ego-syntonic versus ego-dystonic. When something is ego-syntonic, it feels aligned with a person’s own values, identity, beliefs, and sense of self. In other words, it fits with who they are and what they want. When something is ego-dystonic, it feels out of step with a person’s true values and desires. It can feel unwanted, distressing, or even the opposite of what they believe or would ever choose for themselves. In other words, it’s unwanted.

In OCD, the obsessions and compulsions are typically ego-dystonic. That means the intrusive thoughts feel upsetting and unwanted, and they do not reflect what the child actually believes or wants. As Dr. Onyeka explains, when we ask a child if they’re worried about germs because they get sick so often, “The answer is going to be, ‘No. I have no idea where this came from.’ And that’s where that ego-dystonic piece comes in. One of the key markers of OCD is this doesn’t make sense. I have no idea where this came from.”

Compulsions

Compulsions are “repetitive behaviors or thoughts that a person uses to neutralize or counteract the obsession — essentially to try and make their obsessions go away.”

Compulsions are the things kids feel like they have to do in response to anxiety or intrusive thoughts, even when they don’t really want to. They can show up in lots of different ways. For example, a child might repeatedly ask for reassurance, such as, “Are you sure I’m going to be okay?” or keep checking that they did something “right.” Others might do things like washing their hands over and over, repeating actions until they feel “just right,” mentally reviewing things in their head, or avoiding certain places or situations altogether.

While these behaviors usually help reduce anxiety in the moment, they tend to keep the OCD cycle going over time because the relief the person feels is temporary.

OCD can show up in different ways for kids, but it often centers around a few common themes. As Dr. Onyeka explains, “In kids, we see that OCD is a very diverse disorder in the sense that it looks a lot different for a lot of different kids. For some folks, the fear is focused on contamination, fear of germs, and things like that. For some folks, the fear can be focused on not feeling like things are ‘just right,’ like feeling like something is off and needing to correct it in some way. And for some folks, it might be a need for things to be the same in terms of symmetry. Or it might be having inappropriate thoughts that are taboo — that could be sexual in nature or hard to think about — that can cause a lot of distress. So it can look different, but it basically focuses on these intrusive, unwanted thoughts and these repetitive behaviors or mental acts.”

Common obsessions in kids:

• Contamination and health fears: children may worry excessively about germs, getting sick, or dying. They may fear contact with bodily fluids, dirt, or “contaminated” objects, and may avoid eating in public restaurants, using public toilets, or touching anything they perceive as “dirty.” This may also include fears around food safety (for example, that food is contaminated or will make them sick). This can also include avoiding cleaning or organizing their room due to fears that touching items will expose them to germs or cause contamination.
• Responsibility and harm fears: a child may have intense fears that something bad will happen and that they will be responsible for it. This can include feeling overly accountable for preventing harm or worrying that one mistake could lead to something terrible happening.
• Religious or moral OCD (scrupulosity): this involves excessive concern about right and wrong, morality, or offending God. Children may feel a strong need to “get it right” morally or spiritually, even in situations where there is no clear rule.
• Perfectionism and “just right” obsessions: kids may feel that things need to be “just right,” even, or exact. This can include a fear of making mistakes, intense concern about neatness, or needing things to feel perfect or “just right” before they can do something.
• Body-focused (somatic) obsessions: a child may become overly focused on normal bodily sensations, such as noticing their heartbeat or breathing, and becoming anxious about what those sensations mean.
• Magical thinking: this includes beliefs that thoughts or actions can cause unrelated events. For example, a child may believe that if they don’t pray every night, something bad will happen to their family.
• Relationship OCD: children may experience intense doubt or anxiety about relationships, such as feeling very distressed if a friend doesn’t text back right away or constantly questioning the stability of a friendship.
• Harm OCD: these are unwanted, intrusive thoughts or images about harming others or oneself, which are distressing because they go against the child’s true intentions.*

*Parent note: children who have violent intrusive thoughts find them to be very upsetting and distressing. These obsessive thoughts don’t mean that they have any desire or intention to act on them. As a parent, it can be scary to hear, but it is very important to note that these children should not be confused with those who are at risk of violent behaviors.

Common compulsions in kids:

• Ordering, arranging, and “just right” behaviors: children may line up, arrange, order, or check items repeatedly until things feel correct, balanced, or “just right.” This can also include checking items in a very specific way or repeatedly adjusting objects until they feel safe or complete. Some children may need to repeat everyday activities until they feel “just right,” such as being put in a car seat over and over again. Nighttime or morning routines may take hours because steps must be done in a specific order or way.
• Redoing schoolwork and perfectionism in assignments: a child may redo schoolwork or assignments over and over to make them “perfect,” even when they already understand the material. They may have difficulty completing homework or assignments due to doubt, repetition, or needing things to feel exactly right.
• Erasing, rewriting, and writing rituals: children may erase repeatedly while writing or drawing, sometimes to the point of tearing paper, smudging ink, or making work difficult to read. Writing tasks can take much longer due to repeated corrections and rewriting.
• Reading and repeating rituals: this can include reading and rereading words, letters, or sentences, or repeating syllables until they feel or sound “right.”
• Asking questions and reassurance-seeking: a child may ask the same questions repeatedly, even after receiving an answer or already knowing the answer. This often includes excessive reassurance-seeking, such as, “Are you sure I’m going to be okay?” Some kids or teens may also text or call a friend or boyfriend again and again just to feel sure everything is okay.
• Bathroom-related and hygiene compulsions: children may have frequent bathroom-related behaviors, such as repeated trips to use the toilet, wash hands, or shower. This can also include washing hands excessively or in a very specific way, or using excessive hand sanitizer.
• Avoidance and contamination-related behaviors: a child may avoid touching other people’s belongings or become distressed if their own items are touched or moved. They may also avoid certain objects altogether, such as pens or pencils, and rely only on a computer or tablet if they have intrusive fears. This can extend to avoiding shared supplies or using indirect contact methods, such as using elbows or tissues, holding hands in the air, or refusing to shake hands.
• Ritualized movements and counting behaviors: this can include unusual or ritualized movements, such as walking in specific patterns through doorways, counting tiles or syllables, or repeatedly tapping, touching, sitting, or standing in a certain way. Children may also count while doing tasks to end on a “good,” “right,” or “safe” number.
• Checking and fear-based safety behaviors: this includes constant checking or rechecking of doors, lockers, schoolwork, or belongings.
• Mental safety rituals and confession behaviors: children may engage in excessive wishing or praying to keep everyone safe or may feel the need to confess every bad thought to you to reduce anxiety. For example, a child may think about a parent driving and suddenly have the thought, “What if they get in a car accident?” That intrusive thought can quickly trigger a compulsion, such as needing to repeat an action a certain number of times to try to prevent the feared outcome.

Note that pure OCD (often called pure O, or purely obsessional OCD) is a form of OCD where the compulsions are largely internal rather than visible. Instead of outward behaviors, such as handwashing or checking, the rituals happen in the mind and can be harder for others to notice.

Common mental compulsions can include silently repeating words or prayers, mentally reviewing past events to look for certainty or reassurance, trying to “cancel out” an uncomfortable thought with a more positive one, or getting stuck in loops of rumination in an effort to solve or fully figure something out.

Because the compulsions are not visible, it can look like the person is “just obsessing,” but that isn’t the full picture. In reality, all forms of OCD follow the same cycle: an obsession triggers anxiety, which leads to compulsions (even if they’re mental or invisible), followed by temporary relief before the cycle starts again.

Word, who has OCD, explains that her OCD has never centered around cleanliness or organization, but instead shows up through intrusive thoughts and emotional distress. She adds that her OCD also includes compulsions tied to numbers, timing, and repetition. When she is unable to complete things a certain number of times or for a specific duration, she describes experiencing real physical discomfort and tension. She also notes that, as someone with co-occurring Tourette syndrome, her tics can increase during these moments of heightened OCD distress, highlighting how strongly mental compulsions can show up in the body.

For Word, compulsions are often triggered by a sudden “what if” thought — especially fears about harm coming to loved ones. She describes how these intrusive thoughts can quickly turn into rituals meant to prevent feared outcomes. “A large part of OCD that people overlook is the emotional aspects and how intrusive thoughts can play a role. So most of the time, if I have to do a ritual, if I’m acting on a compulsion, then it’s because something popped into my mind that triggered it, like I thought about my mom, who was driving in her car, and I thought, ‘Oh, what if she gets in a car accident? I have to do this a certain amount of times to make sure that doesn’t happen,’” she explains.

She shares that OCD can feel like an overwhelming sense of responsibility and burden, where she feels driven to prevent imagined outcomes from happening, and that isn’t discussed enough. As she describes, it can feel like her brain gets “stuck on a carousel,” where the same fear keeps returning and becomes hard to disengage from.

She also emphasizes how often OCD is misunderstood as general anxiety or dismissed in children, even though the internal experience is far more intense and consuming.

Davidson explains that it can sometimes be tricky to tell the difference between OCD and typical childhood behaviors because many kids naturally engage in imaginative play, strong interests, or quirky habits. The key question, she notes, is whether the behavior is causing distress or interfering with daily functioning.

“There are some things where people will say, ‘Oh, that’s a normal kid thing,’ and some of these things are,” Davidson explains. “But also, it’s: does it cause me distress, and is it impairing my functioning?”

She gives the example of animism, which is when young children imagine that their toys or stuffed animals have feelings, thoughts, or personalities. This is a normal part of development. As Davidson says, “My bunny doesn’t want to sit there,” or “Sally the doll is having a bad day” — these kinds of thoughts are not red flags on their own. She explains that concerns may arise when this kind of thinking becomes extreme or starts interfering with daily life. For example, if a child feels compelled to pack an entire suitcase of toys so “none of them feel left out,” that level of distress and responsibility may point toward OCD-like patterns.

Davidson also talks about collections or strong interests, which can sometimes be misunderstood and misdiagnosed as autism. She notes that kids may naturally develop intense interests or hyperfixations, like anime, dollhouses, or rocks, and these can be healthy and enjoyable. The key difference is whether the interest is driven by pleasure and curiosity, such as in autistic children — or by fear and obsession, such as in OCD.

She explains that in OCD, these behaviors are often not enjoyable. Instead, they can be fueled by anxiety or a sense of responsibility. For example, a child might feel that if they don’t collect every acorn outside, something bad will happen to their family. Or they may feel that if their collection is moved even slightly, something terrible will occur.

As Davidson puts it, “Those collections are fueled by an obsession or fueled by a fear. We don’t want them. . . . It’s not enjoyable. It’s not pleasurable. It’s not interest-based.”

Ultimately, Davidson reminds parents that the goal is not to label every behavior, but to understand when something crosses the line into causing significant distress or interfering with functioning.

Early signs and trusting what kids are telling you

Word shares that she first began sharing her thoughts, worries, and compulsions with her parents around third or fourth grade, when she started to recognize that her internal experience felt different from what was typical. She describes how, even as a young child, she could tell that her worries were being amplified in ways that were difficult to understand or explain.

She shares that what helped most was not only her willingness to speak up, but her parents’ ability to notice that something felt different. “I think as a kid that’s really hard to communicate, but my parents did a wonderful job at picking up on, ‘Hey, she’s coming to us with an issue that doesn’t affect us at all; we never have these thoughts, so maybe we should look more into this,’” she says.

Word emphasizes that it can be difficult for parents to distinguish between typical childhood behavior and signs of OCD, but that noticing patterns that interfere with daily life, such as participating comfortably in school and social settings, can be an important clue.

She notes that one of the challenges is that children themselves often don’t fully understand what they are experiencing, which can make it harder to communicate clearly. Word encourages parents to listen closely when children express anxiety or repetitive worries and to take those concerns seriously, especially when they begin to impact daily functioning.

One of the biggest misconceptions about OCD is the idea that there must be a clear reason why a child develops it. Families may hear questions like, “What happened?” or try to connect OCD symptoms to a specific event or trauma. But according to Dr. Onyeka, OCD often doesn’t work that way, and asking children or parents to “make sense” of it can sometimes feel invalidating or even harmful.

Dr. Onyeka explains that OCD usually attaches itself to the things that matter most to a person, not because they have a trauma history with it or something happened that made them fearful. “The reason for that is that if these are your inherent values, the inherent things that are very important to you, your brain is smart,” she says. “We have big, beautiful, amazing brains, and they know the thing that’s going to get my attention the most is the thing that matters to me.”

That means OCD themes are often connected to a child’s deepest values, relationships, fears, or sense of responsibility, not because something bad necessarily happened, but because those topics feel emotionally important. OCD’s goal is to grab attention and create enough anxiety that the person feels driven to do compulsions or rituals to feel safe.

For example, a child with contamination OCD (fear of germs) may not have a history of serious illness, and a child with intrusive thoughts about harm may never have experienced violence or trauma. For many kids and parents, that confusion can lead to shame or self-blame. Families may think, “We have a loving home. Nothing traumatic happened. Why is this happening?” But Dr. Onyeka emphasizes that OCD often doesn’t have a simple explanation. While life experiences and family dynamics can sometimes influence symptoms, OCD frequently feels irrational and confusing by nature, and that is part of the disorder itself.

Note to parents: PANDAS and PANS

OCD may also be triggered by streptococcal infection, linked to PANDAS or PANS. PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections) and PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) are conditions where sudden-onset OCD and other neuropsychiatric symptoms can develop. The NIH explains, “PANS may be triggered by various infections, immune system issues, or environmental factors. PANDAS is a subtype of PANS and is specifically associated with an infection from streptococcal (strep) bacteria — such as strep throat or scarlet fever.”

The difference between typical OCD and PANS-related OCD is that typical OCD develops over time, while children with PANS or PANDAS have a sudden onset or worsening of symptoms — with symptoms usually reaching full intensity in a few days after onset. Note: many parents report that their pediatrician told them PANDAS is not a real thing, but it is. If your child has a sudden onset of OCD-like symptoms, it is important to get a strep test ASAP.

Is OCD genetic?

According to Davidson, OCD is a neurobiological disorder, meaning there is a strong brain-based and genetic component involved. But, as Davidson explains, “That doesn’t necessarily mean copy-paste OCD or copy-paste themes. So if you have a parent with OCD who presents a certain way, that doesn’t mean it’s genetically going to fall that same way.” Instead, what children may inherit is a broader tendency toward anxiety or OCD.

For many parents, this can bring up feelings of guilt or self-blame, especially if symptoms appeared after a stressful life event. Families often wonder whether OCD would have happened if circumstances had been different. Davidson says this is something she hears often from parents: “If we never moved schools,” “If our pet never passed away,” or, “If Grandma never got sick, this never would have happened.” But she emphasizes that while we may have the genetic component, OCD will often show itself during stressful experiences and life transition: “Oftentimes, between ages 18 and 22 is when we’re going to see the highest onset of symptoms, because we have so many blooming experiences — first job, first relationship, moving out, going to college, all those types of things.”

When OCD symptoms appear in younger children, it can feel especially alarming for parents. But Davidson wants families to understand that this does not mean they caused the disorder. “It’s not really a question of if. It’s a question of when. . . . So kind of reducing some shame that way is really important, too.”

As we discussed earlier, OCD is part of a broader group of conditions that share similar patterns of repetitive thoughts, urges, or behaviors. These conditions are sometimes described as being on the “OCD spectrum” and include body dysmorphic disorder, hoarding disorder, trichotillomania (hair-pulling), excoriation disorder (skin-picking), and chronic tic disorders.

Dr. Onyeka explains that OCD often doesn’t show up on its own; it can commonly co-occur with other conditions, especially in kids. “OCD is a lot of times co-occurring with other disorders, too. So OCD and ADHD, or OCD and depression, OCD and anxiety. So those are some other outcomes and effects that can pop up with OCD in kids, too.” She also highlights that OCD can overlap with other neurodivergent presentations, including autism and Tourette syndrome. This overlap can sometimes make it harder to tell what’s driving a child’s behaviors, since different conditions can look similar on the outside.

OCD and autism

OCD is also strongly correlated with autism. A significant number of individuals with autism also experience anxiety disorders, including OCD, with rates ranging from 17% to 37%. This increased prevalence is significantly higher than the general population, where the rate of OCD is estimated to be around 1.6%. Dr. Onyeka explains that co-occurring “OCD and autism is common, and it’s hard sometimes to tell, because there’s a lot of overlap in how it looks.” She describes how OCD involves intrusive thoughts and repetitive behaviors aimed at reducing distress, while autism may involve repetitive behaviors, sensory sensitivities, or a strong need for sameness and routine.

Repetitive restricted behaviors (RRBs), which are a core feature of autism, are often the most easily confused with OCD on the surface. This can include lining up, spinning, or arranging objects; having an intense focus on a narrow range of topics or interests; or performing stereotyped or repetitive movements. These may, on the surface, appear to be OCD compulsions, but they serve a different purpose. In fact, although OCD and autism can look similar, they have many factors that are different.

In autism, RRBs are typically experienced as helpful, regulating, or even enjoyable. In contrast, OCD symptoms are generally driven by distress and are unwanted and/or intrusive. There are also differences in patterns and context. Autistic RRBs are usually universal — not necessarily sensitive to situational contexts — while OCD symptoms are often situational and dependent on circumstances. Also, the age of onset for RRBs is typically before age five, while OCD symptoms typically show up between ages eight and 12.

It’s also important to note that communication differences, which are a core feature of autism, can sometimes make it more difficult to identify or clearly separate OCD symptoms in autistic individuals.

Because of the similarities between symptoms of autism and OCD, Dr. Onyeka emphasizes that providers need to be very thoughtful when looking at symptoms: “Providers have to be very mindful of the way that these two can look the same, and then how we can make sure that when we treat the OCD, we’re just treating the OCD, and if we want to treat the autism, we’re treating just that.”

OCD, Tourette syndrome, and Tourettic OCD

Data shows that up to 60% of individuals with Tourette syndrome have been reported to have OCD symptoms, 50% of children with OCD are reported to have had tics, and 15% met criteria for Tourette’s. For parents and clinicians alike, this can often be difficult to tell apart. Both OCD and tics involve doing something repeatedly to relieve an uncomfortable thought, feeling, or sensation. That’s one reason OCD and tics so often occur in the same child, and why the line between them can sometimes feel blurry. The difference is in what is driving the behavior.

To make things trickier, there is also a specific phenomenon called Tourettic OCD (TOCD), which sits at the overlap of tic symptoms and OCD. Unlike typical OCD, which is often driven by anxiety or obsessional thoughts such as “if I don’t do this, something bad will happen,” and typical tics, which are driven by somatic sensations, Tourettic OCD is more often driven by an intense feeling of physical discomfort with an associated cognition of something being "not right” that is only briefly relieved when a movement, sound, or behavior is done “just right.”

Although this discomfort is not initially driven by anxiety or fear, it can become very distressing and even anxiety-provoking if the child is unable to complete the behavior in the way that feels correct. The behaviors themselves are also often more complex than typical tics. Instead of a single movement or sound, a child may engage in tapping, touching objects in a specific pattern, repeating phrases, or performing a sequence of movements in a precise order. Children with TOCD often feel the need to repeat these actions multiple times until they feel “just right” and the internal discomfort settles. In this way, TOCD blends features of both tic disorders and OCD: outward, tic-like movements combined with internal distress when the behavior is not completed in a specific way.

Some researchers describe these behaviors as “impulsions” rather than compulsions, because while they share similarities with OCD compulsions, they are not primarily driven by fear-based anxiety or a goal of preventing harm, but instead by the need to resolve an uncomfortable internal sensation.

When OCD and tics are both present, clinicians typically treat both, but the order depends on the child’s needs. In some cases, they may focus on tics first using Comprehensive Behavioral Intervention for Tics (CBIT) for about four weeks before shifting attention to Obsessive-Compulsive Disorder treatment. When the two are difficult to separate, the treatment team often creates a detailed list that helps distinguish between urges, thoughts, and feelings. From there, they work through the symptoms together in a structured, coordinated way so both sets of challenges are addressed. Read more about this in our article Tourette Syndrome 101.

In this clip, Davidson explains how OCD often co-occurs with other conditions like ADHD and autism, and why it can sometimes be difficult to distinguish between overlapping symptoms without looking closely at what is driving the behavior and how the child experiences it.

Dr. Onyeka explains that OCD can sometimes be missed in children, especially when symptoms are mistaken for personality traits or typical behavior patterns, particularly in kids with developmental differences or autism.

“I certainly think that it can be missed, kind of like a lot of other disorders,” she says. “Every kid is different. Some symptoms that are consistent with OCD, like the compulsive behaviors or the insistence on having things in a certain way, whether it be symmetry or ‘just right’ — some parents or teachers might write it off like, ‘Oh, that’s just how they are. That’s just their personality. They like things a certain way.’”

The following sections present some questions that can be used to determine whether behaviors may be a sign of OCD.

Is it excessive?

She explains that one of the key ways clinicians begin to differentiate OCD from typical behavior is by looking at intensity and impact. If the behavior is happening excessively, it may signal something more clinically significant. She also notes that frequent reassurance-seeking can be a clue that anxiety and intrusive thoughts are driving the behavior.

Is it affecting their daily life?

Dr. Onyeka emphasizes looking at whether the behaviors are getting in the way of a child’s life: “Is it impairing them and the things that they want to do and the things that they need to do? Is it affecting their schoolwork, or their ability to interact with other peers, or their ability to do things at home? And also, is it affecting the family?”

Is it affecting the whole family?

“One thing that one of my mentors, Dr. Eric Storch, says a lot is that OCD is a family-based illness,” Dr. Onyeka explains. “Because it doesn’t just affect the child, it affects the entire family.”

She describes a pattern called family accommodation, where parents or siblings may begin adjusting their behavior to help reduce a child’s anxiety or prevent distress in the moment. While this often comes from a place of care, it doesn’t help the child and can unintentionally keep the OCD cycle going.

In this clip, Dr. Onyeka explains why OCD in children is sometimes mistaken for personality traits, routines, or “just how they are.”

Diagnosing OCD is a multistep process that involves collaboration between parents, teachers, and other providers in order to get a full picture of what a child is experiencing.

Step 1. Talking to family and teachers

Dr. Onyeka explains that the first step is usually a thorough clinical assessment. This includes gathering detailed information from the family about the child’s history and current symptoms. “The first step is usually conducting a clinical assessment, and that would consist of asking the family questions about the child’s history; the history of their symptoms; what situations, environments, even the times of day that you notice these symptoms happening; etc. Then getting reports from other reporters, so from teachers, nurses at the school, and other folks who are interacting with the child.”

Step 2. Performing clinical assessments

The next step is using evidence-based assessments. “Then you would use clinically administered, gold-standard instruments that are designed to assess OCD in children. One that is the gold standard is called the Children’s Yale-Brown Obsessive-Compulsive Scale (CY-BOCS) that has a ton of items on the checklist that are all centered on OCD, symptoms, obsessions, compulsions. And then there’s also an opportunity to measure the severity of those symptoms: how often do they happen per day? What would happen if you couldn’t do a compulsion? How distressed would you feel? Are you able to resist having to perform this compulsion or having this obsessive thought? All of those things are assessed, among other measures, such as how does family accommodation show up in the family?” There is also a self-assessment version of the scale for use by parents and children.

After gathering this information, clinicians may collect additional data if needed and determine whether a diagnosis is appropriate. For younger or nonspeaking children, Dr. Onyeka emphasizes that parents and caregivers become especially important sources of information, along with direct behavioral observations.

Davidson explains that assessment and treatment priorities are guided by what is most impacting the child’s daily functioning. “Any time that I am getting an assessment for someone and the question is, do they have OCD or not, the answer to that is less important than what are your barriers to your functioning?” she explains. “If autism is going to be the main barrier to your functioning, we’re actually going to want to work on that first. So even if OCD is a co-occurring disorder, we’re going to want to work on what is getting in the way of school, being an active member of your family, first.”

What to look for in an OCD specialist

Davidson emphasizes that when OCD is suspected, working with a specialist is especially important because OCD is one of the most commonly misdiagnosed and misunderstood mental health conditions. “When we’re doing the assessment, we really want to make sure that we’re working with someone that has a full breadth of understanding of what this looks like, because it can be so often misdiagnosed. . . . One of the difficult things with OCD is that the wrong treatment is not only unhelpful, it can actually be harmful. So this is why, if you’re seeing some OCD or if you get a full psychological assessment and they’re saying, ‘Hey, we might be seeing this,’ it’s important to go to somebody who is a specialist,” she says.

One of the key things to look for, she notes, is whether a provider uses Exposure and Response Prevention (ERP), which is part of the gold-standard treatment approach alongside cognitive behavioral therapy (CBT). Anything outside of that could be harmful.

When communication challenges make diagnosis harder

Davidson also notes that in cases where communication is limited or more complex — such as with younger children or individuals with disabilities that impact their ability to speak — assessment can be more challenging. In those situations, clinicians may need to rely more heavily on behavioral observations and caregiver input to understand what is driving the behavior. And if “communication and being able to have those conversations and talk about the why or talk about what’s happening for [a child] is difficult, we’re going to want to actually work on that first before we do the OCD-specific treatment,” she says.

When it comes to identifying OCD in more complex presentations or if a child has difficulty communicating, she explains that clinicians also look closely at how a child responds when they are asked to tolerate anxiety without engaging in compulsions. “What we’re going to do is look at how uncomfortable it is for you to sit with whatever is making you anxious. That’s where we’re going to see if there is a marker where we need to do some Exposure Response Prevention treatment. Because essentially, the goal of OCD treatment is to get you to sit with discomfort, to tolerate the anxiety.” She adds that a key distinction is whether a behavior is truly compulsive or simply preferred. “So let’s say we’re looking at handwashing. . . . If I take away your handwashing and make you sit with that discomfort, and you’re actually okay with it, like, ‘I prefer to wash my hands, but it’s not that big of a deal to me,’ that’s probably not going to be OCD. . . . And we’ll kind of start from there.”

Dr. Onyeka explains that OCD can be a long-term condition, but it is also highly treatable, especially when it is identified and addressed early. The key is not waiting until symptoms become overwhelming or deeply embedded in daily routines.

She encourages parents to reach out for support if they notice signs that OCD is starting to interfere with everyday life. “There is no shame in getting a second opinion,” she notes, especially when compulsions begin to disrupt family routines or require different rules for one child compared to siblings.

For example, if a parent finds themselves changing how they respond to one child’s anxiety in ways they wouldn’t with another child — simply to reduce distress in the moment — it may be a sign that OCD is shaping family patterns. In those cases, she suggests consulting a provider to explore whether approaches like CBT or ERP could be helpful. Explore some of these treatments in our article Common OCD Treatments and Therapies.