Those of us who hang out in neurodiversity-affirming circles are typically familiar with the “neurodiversity umbrella” oh so well illustrated by Sonny Jane Wise (@LivedExperienceEducator). And if neurodiversity is a new term for you, check out their blog here: What is neurodivergent? What is neurodiversity? — lived experience educator that explains those terms in detail!
On this blog, I’ve talked about neurodiversity mostly in terms of autism and ADHD, as these are the conditions that we know most benefit from a specifically ND-affirming approach. However, the more I seek out affirming treatment approaches for other conditions that fall under the “umbrella”, I’m realizing that we as a field are lagging far behind.
One of these conditions is obsessive-Compulsive Disorder (OCD), a condition characterized by overwhelming, uncontrollable thoughts typically of a distressing nature followed by compulsive, repetitive behaviours meant to ease these thoughts. However, what typically happens in OCD is that the compulsions do not ease the thoughts and people get stuck in thought-behaviour cycles.
Perhaps not surprisingly, there is a significant link between OCD and autism. Part of the autism-OCD overlap may reflect misdiagnoses or missed diagnoses. OCD rituals can resemble the repetitive behaviors common in autism, and vice versa. Studies indicate that up to 84 percent of autistic people have some form of anxiety, with 17 percent meeting criteria for OCD. An even larger proportion of people with OCD may also be autistic. For more background on the research behind this co-occurance, check out Dr. Megan Anna Neff's work at (@neurodivergent_insights) and Insights of a neurodivergent clinician (neurodivergentinsights.com).
The “gold standard” therapy for OCD is Exposure and Response Prevention (ERP) which involves controlled exposure to obsession-provoking situations with inhibition of compulsive behaviours in order to build distress tolerance. While this approach may work very well for neurotypical people, a neurodivergent person may not respond well to this at all, and it may end up causing even more distress.
A more well-studied phenomenon that relates to this is misophonia. This is another condition that frequently co-occurs with autism and causes pain, irritability, or anger in response to certain sounds, such as chewing. Neuroimaging studies have now shown that exposure to misophonia triggers actually strengthen the connections in the auditory cortex, not weaken them, which results in an even worse negative response to the sound. Given this, there’s reason to believe that ERP treatment of OCD, as it's based in forced exposure to triggers, may do more harm than good for autistic folx.
A neurodiversity-affirming approach to OCD needs to take into account that OCD symptoms increase with anxiety and nervous system dysregulation. These should be targets for treatment along with reduction in the frequency and intensity of obsessive thoughts and the development of distress tolerance skills. I also think there is value in working with OCD as another difference in wiring, much the way we think of ADHD or autism neurotypes. Perhaps the OCD brain is wired to form stronger connections more easily and the neurons that "fire together, wire together" are more difficult to unlink.
Leigh Charest, 33yo in Maine with OCD. Thank you so much for this thoughtful article. I’ve been resistant to ERP for years; indeed, for me personally I’ve often thought it causes more distress (and not just short-term like it’s supposed to). OCD can be an extremely scary condition to live with, and I really wish the psychology community adopted more of a multi-pronged and neurodiversity-affirming approach to researching treatments, similar to what you’re suggesting. It’s a bit alarming to see ablative brain surgery being increasingly considered for wider use where ERP has failed with OCD. If that works for some people, hey, that’s good, but I surely feel neurodiversity-affirming alternatives deserve heavy consideration. We’re not always broken, just different.