Estimates vary but still hover around 14-17 years from onset of symptoms to receiving a proper diagnosis and treatment. That’s 14-17 years of untreated OCD which becomes more entrenched and difficult to treat as time goes by. To me, and I’m guessing to most people, this is not acceptable.
In a July 2018 article published in Comprehensive Psychiatry titled “Atypical symptom presentations in children and adolescents with obsessive compulsive disorder,” the authors detail some lesser-known symptoms of OCD that children and adolescents might exhibit. 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 checklist contains the most common symptoms presented in youth with OCD and includes obsessions related to contamination, aggression, and magical thinking, to name a few. Compulsions listed include but are not limited to, checking, counting, cleaning, repeating, and ordering. The CY-BOCS can be an extremely helpful tool for clinicians, especially in diagnosing a more “straightforward” case of OCD. Still, many cases of childhood OCD are either undiagnosed or misdiagnosed. Sure, OCD experts know their stuff, but there just aren’t enough of them to go around. Unfortunately, many mental health providers simply do not know a lot about obsessive-compulsive disorder.
Back to the study mentioned above which describes two distinct types of atypical OCD symptoms found in 24 children. Researchers showed 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 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.
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. 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.
Master A, 10-year-old male child, with uneventful birth and developmental history without past and family history of neurological and psychiatric illness presented with complaints of repetitive spitting, withdrawn to self, lack of interest in study, repeatedly closing his ears by hands from last 8 months and refusal to take food from last 7 days. He was hospitalized. On physical examination, all parameters were within normal limits except presence of mild dehydration. Intravenous (IV) fluids were started. On initial mental status examination, the patient was unable to express the reason behind this type of behaviour. On repeated evaluation, the patient expressed that he did not want to take food as he thinks that any word spoken by him or by nearby people or any word heard by him from any source were written on his own saliva and he cannot swallow the words with food or saliva. For this reason, he was spitting repetitively, avoiding interaction with people, avoiding food. To avoid any sound, he closes his ears by hands most of the times. He expressed that this type of thought was his own thought and absurd one. He tries to avoid this thought but he was unable to do so. After 6 months of onset of his illness, he was treated by a psychiatrist as a case of schizophrenia and was prescribed tablet aripiprazole 10 mg per day. After 2 months of treatment, instead of any improvement, his condition deteriorated and he visited our department. After evaluation, a diagnosis of OCD, mixed obsessional thought and acts was made… His CY-BOCS score dropped to 19 after 8 weeks of treatment and he was discharged from the hospital.
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 people are misdiagnosed and never receive a correct diagnosis?
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 it is properly diagnosed.