In over ten years as an advocate for OCD awareness, I have seen little improvement in the understanding of what OCD really is. While it can be annoying when the general public doesn’t “get it,” it can be downright dangerous when the lack of understanding comes from healthcare professionals.
We tell parents of children with OCD to connect with OCD specialists (of which there is a shortage, but that’s for another post), but first they need to know that their children have OCD.
It shouldn’t be that difficult to get diagnosed, should it? Typically, clinicians who want to rate the severity of obsessive and compulsive symptoms in children and adolescents use the Children’s Yale Brown Obsessive Scale (CY-BOCS) checklist. This tool can be extremely helpful for clinicians, especially in diagnosing more “straightforward” cases of OCD. Still, many cases of childhood OCD continue to be undiagnosed or misdiagnosed.
In a July 2018 article published in Comprehensive Psychiatry titled “Atypical symptom presentations in children and adolescents with obsessive compulsive disorder,” the authors detail two distinct types of atypical OCD symptoms found in 24 children and adolescents. They explained how these symptoms are part of a larger clinical picture, not a feature of an alternate condition such as psychosis or autism spectrum disorder, as sometimes thought. As explained here:
Twelve of the children had obsessions rooted in a primary sensory experience (such as auditory, olfactory, or tactile) that they found intolerable and which was sometimes linked to specific people or objects. To soothe or avoid the associated sensory discomfort, patients were driven to engage in time-consuming repeated behaviors. Many of these patients struggled with ordinary activities such as eating or wearing clothing and can be at risk of seeming to exhibit symptoms of autism spectrum disorder, especially when the patient has a level of self-awareness that leads them to conceal the obsession behind the behaviors.
The other 12 children had obsessions rooted in people, times, or places they viewed as disgusting, abhorrent, or horrific, and which led to contamination fears connected to any actions or thoughts they saw as related to these obsessions. These kinds of contamination obsessions could result in concrete contamination concerns but more often resulted in abstract, magical-thinking fears of specific, highly ego-dystonic states of being. When the fear was a reaction to a particular individual or individuals, the obsession most often resulted in avoidance behaviors designed to placate a fear of acquiring a characteristic or trait of the individual by contagion. Patients exhibiting these symptom presentations are at risk of being diagnosed with psychosis.
In a different case study a ten-year-old boy was misdiagnosed with schizophrenia and put on an atypical antipsychotic, which only exacerbated his OCD. What I find particularly heartbreaking about cases such as this one is the fact that atypical antipsychotics (in this case aripiprazole) have been known to exacerbate the symptoms of OCD. How many children are misdiagnosed and never receive a correct diagnosis?
Obsessive-compulsive disorder is complicated and I have connected with a number of people whose family members (or they themselves) have been misdiagnosed with autism spectrum disorder, schizophrenia, and even Bipolar Disorder. As we see, these misdiagnoses can have devastating effects on the person with OCD, not only because proper treatment is delayed, but because therapies used for other disorders can make OCD worse.
Health care professionals need to be better educated about OCD, so at the very least, it will be on their “radar screen” when evaluating patients. Obsessive-compulsive disorder has the potential to destroy lives, but it is also very treatable – once you know you have it.