OCD missed in most young people, while few receive the therapy that works

A review of records from more than 2.3 million US youths found far fewer OCD diagnoses than expected, with only 4% of identified patients receiving documented exposure and response prevention.

The International OCD Foundation is warning that obsessive-compulsive disorder remains widely missed in children and teenagers, despite clear signs that many young people are struggling with symptoms that can disrupt school, family life and daily routines. In a new white paper, the organisation said its review of 10 years of electronic health records from more than 2.3 million youths found that only 0.74% were identified as having OCD, far below expected prevalence estimates of up to 3%. It also found that just 4% of those identified had documented exposure and response prevention, or ERP, the behavioural therapy widely regarded as the most effective treatment.

The foundation said the findings point to a broader care gap in the United States, where up to 2 million children and adolescents may be living with OCD without being properly recognised or treated. More than 64% of the young patients identified in the database had no documented referral for ERP or any form of cognitive behavioural therapy, underscoring how often families may be left without access to specialist care.

Part of the problem is that OCD does not always match the familiar stereotype of repeated handwashing or checking locks. According to the foundation and clinicians writing about the issue, symptoms can instead appear as intrusive fears about harm, morality, religion or responsibility, along with mental rituals such as silent counting, repeating phrases or constantly seeking reassurance. In children, the disorder may show up as irritability, withdrawal, school difficulties, procrastination or a growing reliance on parents to reduce distress.

The IOCDF has argued that the diagnosis often comes late, with some patients spending years in treatment for anxiety or other concerns before OCD is identified. In a separate discussion published by the group, experts Rebecca Deusser and Sanjaya Saxena said many people live with OCD for an average of seven years before getting a diagnosis, a delay that can allow symptoms to become more entrenched. The foundation has also said that routine screening, better clinician training and wider use of evidence-based therapy are needed to close the gap.

For families, the message is that OCD is treatable, but only if it is recognised correctly and managed with approaches that target the disorder itself. The foundation says ERP remains central to care, often alongside family education and support that helps parents avoid accidentally reinforcing compulsions. Its wider campaign also includes public education, clinician consultation and support groups aimed at making specialised treatment easier to find.