Our Kids Deserve Better: What the New IOCDF Pediatric OCD Report Means for Families
There are some statistics you read as clinicians that are difficult to move past.
This week, the International OCD Foundation (IOCDF) released a new white paper, Losing Childhood to America’s OCD Care Crisis: The State of Pediatric OCD Care in the United States. As a team of clinicians who specialize in OCD and anxiety, and who genuinely love working with children, teens, and their families, we found these findings both staggering and heartbreaking.
The report analyzed 10 years of electronic health record data from more than 2.3 million children and adolescents across the United States. What it found points to an enormous gap between the number of young people likely living with OCD and the number who are actually being recognized and receiving appropriate treatment.
Only 0.74% of children and adolescents in the study were identified as having OCD, despite population estimates suggesting prevalence may be as high as 3%.
And even when OCD was identified, access to the right treatment was alarmingly limited.
Only 4% had documented evidence of receiving Exposure and Response Prevention (ERP), the first-line, evidence-based therapy for pediatric OCD. More than 64% had no documented referral for ERP or even another form of Cognitive Behavioral Therapy (CBT).
Those numbers are difficult for our team to sit with.
Because behind every percentage is a child.
It is the child spending hours redoing homework because it never feels quite right. The teenager quietly seeking reassurance dozens of times a day. The child avoiding school, food, friends, bathrooms, bedtime, or parts of their own home because OCD has convinced them something terrible might happen. Sometimes, it is a child who hasn't told anyone what is happening at all because their intrusive thoughts feel too scary or shameful to say out loud.
And behind that child is so often a family trying desperately to help, without realizing that the reassurance, avoidance, or changes they've made to keep their child comfortable may unintentionally be helping OCD grow.
The IOCDF reports that 90% of young people with OCD experience impairment in at least one area of their lives, including school, relationships, health, or cognition. The report also highlights something we see often in our work at LiveWell: pediatric OCD doesn't affect only the child. It can ripple through the entire family.
This Is Exactly Why Specialized OCD Care Matters
At The LiveWell Collective, children and adolescents with OCD aren't simply one population among many that we treat. Caring for kids with OCD and their families is at the heart of what we do.
Our clinicians specialize in evidence-based treatment for OCD and anxiety disorders, including Exposure and Response Prevention (ERP). And with children, that work has to be more than simply taking an adult treatment protocol and making it smaller.
Good pediatric OCD treatment is developmentally appropriate, collaborative, creative, and deeply attuned to the family surrounding the child.
The IOCDF similarly emphasizes the importance of clinicians being able to design exposures appropriate to a child's developmental stage and of engaging parents and caregivers as therapeutic allies.
For us, that might look like helping a child learn to recognize when OCD is doing the talking. It might mean practicing brave things together in session rather than only talking about anxiety. It can mean helping parents understand when reassurance or accommodation may actually be feeding OCD, and teaching them how to respond differently while still remaining warm, connected, and supportive.
And sometimes, it simply starts with giving a child and their family language for something they may have been trying to understand for years:
This has a name. There is treatment for it. And there is hope.
Kids Shouldn't Have to Lose Years of Childhood Before Finding the Right Help
Perhaps that is what feels most heartbreaking about these findings.
We already have treatments that work.
And yet too many children are still going unidentified, misdiagnosed, untreated, or receiving treatment that isn't specific to OCD.
The IOCDF is calling for broader OCD screening, better clinician training, increased access to evidence-based care, greater family education, better recognition within schools, and more accurate public understanding of what OCD actually looks like.
We wholeheartedly support that mission.
At LiveWell, we want children to have lives that are bigger than OCD. We want them back at birthday parties, sleepovers, school, sports, family dinners, messy art projects, and all of the wonderfully ordinary pieces of childhood that OCD can slowly begin taking away.
Most of all, we want families to know that effective treatment exists, and you do not have to figure this out alone.
We Want the Next Report to Tell a Different Story
These findings are heartbreaking, but they also strengthen our commitment to doing our part to change them.
At The LiveWell Collective, we want to keep showing up for kids with OCD and their families. We want more children identified earlier. More families to know what they're looking at. More kids to have access to ERP. More parents to feel equipped to support their child without inadvertently supporting OCD. And more young people to get back to the business of simply being kids.
Our hope is that when we read reports like this in the years ahead, they tell a very different story. One of earlier recognition, greater access to evidence-based treatment, better-trained providers, and far more children receiving the care we already know can help.
We want to be part of making that story possible.
If your child or teenager is struggling with OCD, or you're wondering whether what you're seeing could be OCD, we would love to connect with you. The LiveWell Collective provides specialized, evidence-based OCD treatment, including Exposure and Response Prevention (ERP), for children, teens, young adults, and their families throughout Florida.
We're here. We care deeply about this work. And we'd love to help.
Connect with The LiveWell Collective to schedule a free 15-minute consultation with our team.
Source: International OCD Foundation (2026). Losing Childhood to America’s OCD Care Crisis: The State of Pediatric OCD Care in the United States.