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THE ROAD AHEAD I OCD
Obsessive compulsive disorder and other disorders in this category involve problems with unwanted thoughts and behaviors that kids have when they feel worried or scared. Explore the questions below to learn how to recognize the signs, understand what causes it, and discover effective treatment options.
What caregivers might notice in their child
Kids with obsessive compulsive disorders have certain thoughts that keep coming into their brain, even when they try to stop them, and do certain things to try to help themselves feel better when they have those thoughts. They might worry about getting sick, think there is something wrong with their body, have to do the same things over and over again, or be scared that something terrible will happen to them or their family. There are two important types of symptoms that kids will have:
Obsessions are unwanted thoughts that kids can’t get out of their heads. These could be certain images, or thinking that they have to do something, or being very worried about something bad happening.
Compulsions are the things kids do to try to manage obsessive thoughts. Some kids might wash their hands over and over because they are worried about germs. Some kids might lock and unlock the door ten times before leaving the house because they are worried about someone breaking in. Some kids might walk a certain way because they think that if they don’t, something bad will happen to them or their parents. Kids usually have a hard time stopping these behaviors, because they think that doing these things will help them feel better or keep something bad from happening, even if that’s not really true.
There are a few different diagnoses in this category. Obsessive compulsive disorder (OCD) is the most common one. Other diagnoses are body dysmorphic disorder (believing that there is something wrong with the way your body looks), hoarding disorder (keeping lots of stuff in your home and not being able to get rid of things or throw them away), trichotillomania (pulling your hair out and not being able to stop), and excoriation disorder (picking at your skin and not being able to stop, even if it hurts you).
These diagnoses can cause problems for kids at home, in school, and in their social lives. If left untreated, kids will have a hard time doing the things they are supposed to do and enjoying life, because they will spend so much of their time dealing with obsessions and compulsions. As a parent, it’s important to think about whether your child’s thinking and actions are normal for their age, and if this causes problems for them. All kids worry about things sometimes, or focus on certain things, or behave in strange ways, or do things over and over again sometimes. But if you notice your child is spending more than an hour a day doing the same types of things over and over again, or if your child seems terrified about thoughts they just can’t get out of their head, or if they are pulling their hair out or picking their skin until they bleed, these could be signs of something more serious.
What causes Obsessive Compulsive Disorders?
Obsessions and compulsions are not caused by just one thing – there are a few factors that can make it more likely that a child will develop this kind of disorder:
Kids who worry a lot or have a lot of negative emotions (like sadness, hopelessness, and fear) might be more likely to develop these types of disorders. There are also certain things in kids’ brains that can make it more likely for them to develop these symptoms, and we know OCD and similar disorders are more common for kids who have a parent, grandparent, or sibling who also struggles with OCD.
There are some things that can happen to kids that make it more likely they’ll have OCD or a similar disorder. Kids who are hurt by others or experience something traumatic might start to develop obsessions and compulsions afterwards. If you think your child has experienced something very stressful or traumatic, it’s good to get professional help right away – early intervention can sometimes help protect kids from having these kinds of thoughts and behaviors!
some kids start to have OCD symptoms after they get sick with something like strep. This is usually called PANDAS or PANS. Scientists don’t always agree on how to think about this diagnosis or the best way to help kids with this type of OCD. This is more rare than other forms of OCD, and you should always talk to your child’s doctor if you think this might apply to your child.
Who is affected by compulsive & related disorders?
Scientists estimate that between 1% and 3% of kids and teenagers have OCD. These symptoms can start in childhood or adults can experience obsessive compulsive symptoms for the first time once they’re older. About 1% of kids have body dysmorphic disorder, and this gets more common as they get older (teenagers are more likely to have these symptoms compared with younger kids). There’s less research on the other disorders in this category (skin-picking, hair-pulling, and hoarding disorder) but we know that these happen in kids too.
Treatments that work for obsessive compulsive & related disorders
There are a lot of things that you can do to help your child who has obsessive thoughts or compulsive behaviors – and you’re already taking a big step by learning more! Many kids & parents see a lot of improvement with the right support. Here are some treatments that scientists have found to help with obsessive and compulsive difficulties:
Cognitive Behavioral Therapy (CBT) is usually the best treatment for obsessive and compulsive symptoms – it teaches kids to understand how their thoughts, feelings, and actions are connected and how to make changes in their thoughts to help them feel and act differently.
An important part of CBT for these types of symptoms is exposure & response prevention (ERP). Exposure and response prevention involves working with kids to understand their obsessive thoughts and compulsive behaviors, and teaching them to respond in different ways that are more helpful for them. The first step in ERP is usually creating a list of things that make your child worry or behave in a certain way. You and your child will rank these things from the ones that bother them the least to the ones that make them very upset and scared. Your child’s therapist will usually choose some of the things that don’t bother them as much to start with, and will gently have your child think about these things more or have them do things that make them feel a little bit worried. They will also work with your child to keep them from doing the compulsive behaviors they would usually to do help feel better. This can be hard for kids and parents at first, but it teaches your child that the worry they feel doesn’t last forever, and usually it gets better and they can learn to deal with it. Once your child gets more comfortable with things that are lower on their list, their therapist will start to expose them to things that make them feel more scared, because they will have learned new skills to manage those things. When treatment is successful, your child will learn that they don’t need to use compulsive behaviors to feel better, and they can manage their fear and worry on their own.
Family members of kids who have obsessive thoughts and compulsive behaviors can have a hard time knowing how to help them. For a lot of kids, the compulsive behaviors they have cause problems in their daily life, and these symptoms can make life more difficult for their families too. Family therapy helps support caregivers, siblings, and others in the home to support kids with OCD without leaning into their fears. Sometimes it can be tempting for family members to step in and try to help when kids have obsessions or compulsions, or to try to reassure them right away when they feel worried. Sometimes these things are helpful for a time, but they can also get in the way of kids learning their own skills to manage their symptoms. Family therapy helps with these skills and teaches the whole family how to care for themselves and to best support their child with OCD.
Sometimes kids with obsessions and compulsions can get better with medication. Usually medication helps the most when kids take medication and do therapy at the same time. Medication won’t totally stop your child’s obsessive thoughts or compulsive behaviors, but it helps make them less strong so that your child can work on them in therapy.
Usually doctors recommend medications called SSRI’s (selective serotonin reuptake inhibitors) for OCD. These medications make serotonin (a chemical that sends messages in the brain) more available. Serotonin has a lot to do with how people feel and how they manage their feelings, so having the right level of serotonin in your brain can help you feel your best.
ADVOCATING FOR HELP I OCD
Getting support for obsessions and compulsions starts with knowing what to ask for. Use the questions below to find out how to get help, talk with providers, and access the tools your child may need.
How to get help
There are a few ways to get diagnosed with OCD, body dysmorphic disorder, hoarding disorder, trichotillomania, or excoriation disorder. Here is how you can get started:
Therapists, psychologists, and psychiatrists can help assess your child. Psychologists can test your child for OCD, and psychiatrists can prescribe medication if needed.
Click here to find a provider.
They can do a basic screening and refer you to someone else if needed. If your child is doing any compulsive behaviors like hair pulling or skin picking that might harm their bodies, their doctor can also examine them to make sure they’re okay.
Work with your child’s school. Kids who have obsessive thoughts often have a really hard time focusing in school, because their brain can’t let go of obsessive thoughts and let them focus on what they are learning. If you’re worried about your child falling behind in school or they seem to need more support, you can request an evaluation for accommodations at school (these are usually called IEP’s or 504 plans). Schools typically don’t diagnose OCD, but they can help tell you where your child is struggling and offer some help in the classroom.
Click here to learn more on how to talk to your child’s school.
If my child has obsessive thoughts or compulsive behaviors, what treatment components should I ask my provider about?
Sometimes called exposure therapy or exposure and response prevention (ERP), this is an important part of therapy for kids with obsessive thoughts and compulsive behaviors because it teaches them to face their scary thoughts without using the behaviors they usually do to help them feel better. It can be hard for kids and families at first because it might make kids feel sad or upset or scared to focus more on the thoughts they are having. But it’s kind of like getting a shot at the doctor’s office or cleaning a scraped knee before you put a bandage on it – it hurts a little at first, but in the long run it will help your child feel so much better!
A really important part of exposure therapy or ERP is stopping your child from doing the behaviors they usually do when they have an obsessive thought. For example, if your child is scared of getting sick and constantly washes their hands, the response prevention part of treatment will involve making sure they don’t wash their hands every time they think about getting sick. You’ll want to ask your child’s provider how you can help with this as a caregiver – if your child secretly does these behaviors anyways, treatment won’t work the way it is supposed to. Make a plan with your child and their provider about how you can work together to stop these behaviors from happening – and what your child can do instead when they feel that urge. And when your child is successful, find fun ways to celebrate together along the way!
Part of therapy for OCD is helping your child learn to think differently. Kids with obsessive thoughts often don’t think about things very logically or accurately – that’s part of the problem with obsessive thoughts! For example, a child who is scared of germs might think “If I get germs on my hands, I will definitely get sick. If I get sick, I will definitely throw up. If I throw up, I might not be able to stop throwing up. If I can’t stop throwing up, I will lose weight and not be able to eat. If I can’t eat and never get better, I will get sick and die.” It’s important to stop these thoughts from spiraling, or catastrophizing, and take a more realistic approach. Yes, your child might get sick sometimes when they get germs on their hands, but sometimes they won’t. And it’s highly unlikely that they’ll die from catching a common illness. Caregivers and providers can work together to understand how your child thinks and how you can work with them to think about things more accurately.
Teaching kids how to help their bodies relax is also really important and helpful when they feel worried or scared. Sometimes this can involve focusing on certain parts of their body and trying to relax those areas. It can also involve deep breathing, where kids try to take deep breaths into their bellies to help naturally relax their bodies. Sometimes it just means being present in the moment and trying to focus on what is happening around them. You can learn more about ways to practice mindfulness and relaxation at home here.
PROGRESS OVER TIME I OCD
This section offers a few extra tools to help you along the way. Whether things are going smoothly or getting more challenging, these resources can support you as your child grows and their needs change.
My child has a diagnosis, now what?
Once your child has been diagnosed and is getting treatment, there are still more ways you can support them – and yourself. Here are some next steps to consider:
There are some excellent, practical reads written for parents like you.
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“Freeing Your Child from Obsessive Compulsive Disorder: A Powerful, Practical Program for Parents of Children and Adolescents” by Tamar E. Chansky, Ph.D.
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“Breaking Free of Child Anxiety & OCD: A Scientifically Proven Program for Parents” by Eli R. Lebowitz, Ph.D.
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“What to Do When Your Brain Gets Stuck: A Kid’s Guide to Overcoming OCD” by Dawn Huebner, Ph.D.
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Connecting with other caregivers who get it can make all the difference.
Groups like the International OCD Foundation (link) offer both resources and a sense of community.
Watch this video to learn more.
You can ask your child’s therapist or doctor to use things like OCD rating scales or thought records to track what’s improving – and what still needs support.
Even if your child already has support at school, it’s worth checking in regularly. Ask for updated reports, suggest team meetings, and make sure accommodations are still working. You can also request changes to your child’s IEP or 504 plan if needed.
My child is getting worse, what can I do?
It’s hard to see your child struggling, especially when it feels like things are getting more intense, not better. You’re not alone—and there are steps you can take to get support and stabilize things.
Let them know what’s changed. Sometimes therapy needs to be more frequent or focused differently, or something needs to be changed in your child’s routines or environment. Be specific about what you’re seeing: more aggression, bigger meltdowns, school issues, more frequent outbursts, etc. This will help your provider to identify areas of change that might help your child.
Every family should have a plan for what to do if things get worse or if you or your child feel unsafe. This might include knowing who to call during a crisis (like a mobile crisis team or behavioral health urgent care), when to head to the ER, or how to calm things down safely at home. Your provider can help you build a plan that fits your family.
If your child doesn’t seem to be improving with therapy interventions only, you might consider adding medication to provide them with additional support. You can talk to your child’s pediatrician or a child psychiatrist about what medication might be helpful for their symptoms.
If your child’s provider is doing a form of exposure therapy or ERP with them, it’s also important to check and make sure you and your child are following your therapist’s instructions. Sometimes kids don’t get better with this kind of treatment because they aren’t fully doing the exposure exercises, or they are secretly using their compulsive behaviors anyways. Talk to your child and their provider to see if there are any potential problems with how they are practicing the exposure exercises, and if there are, work together to find a solution.
When your child is in crisis, it can take a toll on your whole family. Connecting with other parents, talking to a therapist, or simply having a support system in place can help you stay grounded while you’re supporting your child.
Talking with my child’s school
Your child spends a big part of their day at school—so it’s important that their learning environment supports their needs. You don’t have to be an expert in education law to advocate for your child. Here’s how to get started:
If your child already has a 504 Plan or IEP, you can call a meeting anytime – not just during annual reviews. Share your concerns, ask for updates, and discuss if changes need to be made. If your child doesn’t have a plan yet, you can formally request an evaluation to see what supports they qualify for.
Click here to learn more.
Schools respond best to clear examples. Keep track of patterns—like missed assignments, behavior changes, or stress around certain subjects. You can also ask your provider to write a summary of concerns or diagnoses to share.
Resources like Wrightslaw explain special education laws in parent-friendly language. Knowing your rights helps you feel more confident in meetings and ensures your child gets what they’re entitled to.
Understood.org and wapave.org is a great website full of free tools, templates, and stories from families navigating similar school challenges. It can help you figure out what to ask for and how to phrase it.
A behavioral health consultant or educational advocate can go to meetings with you, help interpret school evaluations, and suggest goals that actually match your child’s needs. This kind of support can make a big difference—especially if meetings feel overwhelming or you’re not sure what to ask for.
CAREGIVER TOOLKIT I OCD
This section offers simple, practical tools to help you support your child—from building routines and healthy habits to improving communication and recognizing their strengths. It’s also a reminder that taking care of yourself is part of the plan—you’re not alone on this journey.
Daily habits that help
Show your child that it’s okay to have a neutral response even when scary thoughts come into your brain. If your child tells you what they’re thinking about, respond calmly and neutrally. For example, if your child tells you they are scared about getting germs that make them sick, you could say “That’s an interesting thought,” or “We’ll have to wait and see what happens,” or “Yes, sometimes we get sick, and sometimes we don’t!” By responding, you are telling your child that you hear what they are saying, but a calm response shows them that they don’t have to let a scary thought take control of their brain.
If your child is seeing a provider who does exposure & response prevention treatment (ERP), you’ll have an important role in helping them outside of therapy. In ERP, kids will get exposed to things that make them worry and they will feel like they want to do certain behaviors to feel better. Part of treatment is making sure they don’t do these behaviors, so they can start to learn that the things they worry about won’t happen just because they behave in a certain way. It’s important to involve a provider in this treatment and not to do it on your own, because a therapist or other trained professional can monitor your child to make sure the exposure isn’t making them so anxious that they can’t function. Once your provider helps you and your child figure out some ways to gently expose them to things that make them worry, you can practice these things with your child at home.
Sometimes families will stop doing things they enjoy because their child is so worried and scared about bad things happening. This might help them feel better for a bit, but scientists actually tell us that avoiding things will make them worry more in the long run. It’s important for families to keep doing things they enjoy and inviting children with OCD to participate as much as they can. Eventually, with the proper treatment, your child will hopefully be able to do more and more, and start to enjoy life again.
Parents sometimes try to reassure their kids that nothing bad is ever going to happen, so they don’t have to worry. No parent wants their kid to feel worried or scared! But reassuring your child too much can actually cause problems too – bad things happen sometimes, and it’s okay for kids to learn to manage fear and worry on their own. We don’t always know exactly how things will go or what will happen, and you can’t fully protect your child from everything. When they ask questions or tell you that they’re scared, let them know how much you love them and want to protect them, but be realistic too. Make sure they know that they have people who love them and want to support them, even if bad and scary things do happen sometimes.
Reframe the issue – your child isn’t the problem, their OCD is. For young kids, you can even give their OCD symptoms a funny name (maybe their OCD is an imaginary villain, or a type of animal, or a silly sounding name). It helps you and your child talk about their symptoms and separate them from their thoughts and behaviors. It gives them some creative language to tell you when they notice obsessive thoughts in their brain, and you can create imaginative stories about beating their OCD in the same way a superhero fights a bad guy. Remember, you’re on the same team fighting this bad guy together!
Videos like this one can help kids understand how to think about externalizing their worry and facing fears in treatment.
Caregiver self-care
Parenting a child with obsessive thoughts and compulsive behaviors is a big job. It’s okay to ask for help, and it’s good for your child to learn that they can also ask others for help when they need it.
Your child might do things that don’t make sense, worry about things that seem unrealistic, or disrupt your daily routines with their thoughts and actions. It’s easy to get frustrated at your child and it’s important for both you and your child to remember that it’s the OCD talking, not them. Separate the good things about your child from the scary thoughts and difficult behaviors, and remember the child you love is still there – and you’re fighting the diagnosis together.
It’s important not to structure your family’s life too much around your child’s thoughts and behaviors, but it’s also important to be realistic about your capacity to handle strong emotions and behaviors when your child is struggling most. Take a look at your day and see where the most stressful and difficult parts are. Does your child feel a need to check all the locks multiple times before leaving the house? Plan ahead to allow some extra time in your morning routine so you’re not frustrated with how long it takes to get out the door. Does your child struggle more with obsessive thoughts when they’re out in public? Make sure you have a backup plan for a quiet place you can go to take a break if they need it. Having a realistic plan based on your child’s needs and capacity helps set you up for success.
It makes a big difference when you can be consistent in responding calmly to your child’s thoughts and behaviors, but you don’t have to do it alone. The good news is – while it can be challenging at first to start dealing with obsessive thoughts and compulsive behaviors, your child will learn how to practice these skills on their own and you’ll find it will make things easier in the long run.