Long, Hannah; Cooper, Kate; Russell, Ailsa; (2024) 'Autism is the Arena and OCD is the Lion': Autistic adults' experiences of co-occurring obsessive-compulsive disorder and repetitive restricted behaviours and interests. Autism 10.1177/13623613241251512. (In press).

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Abstract

Obsessive-compulsive disorder commonly co-occurs with autism. Research characterising the interplay between restricted, repetitive behaviours, activities and interests related to autism and obsessive-compulsive disorder symptoms has used theory-driven, bottom-up methodology. This study aimed to interview autistic adults about the subjective experience of differentiating between these phenomena. Semi-structured interviews were conducted with 15 autistic adults experiencing obsessive-compulsive disorder symptoms and repetitive behaviours, activities and interest. Transcripts were analysed using reflexive thematic analysis from a critical-realist, inductive orientation. Three overarching themes are presented. Participants viewed repetitive behaviours, activities and interest as intrinsic to their identity, while obsessive-compulsive disorder remained ego-dystonic and a perpetuator of anxiety. Conversely, repetitive behaviours, activities and interest was present across various emotions, often serving as a method to manage anxiety. Routinised behaviours and focused interests were considered by participants to be vulnerable to obsessive-compulsive disorder exploitation. Although participants reported masking both phenomena, the methods and motivations to mask differed. This research demonstrates the importance of delineating these experiences, with suggestions offered in how to explore this with autistic clients. Future research could explore narratives of masking obsessive-compulsive disorder across autistic and non-autistic people and investigate simultaneous co-occurrence of obsessive-compulsive disorder and repetitive behaviours, activities and interest; including how focused interests may influence obsessive-compulsive disorder and how repetitive routines may be intensified by obsessive-compulsive disorder. Lay Abstract: Repetitive behaviours and interests are a hallmark feature of autism. It is very common for autistic people to experience mental health difficulties, such as obsessive-compulsive disorder. Previous research has investigated similarities and differences between obsessive-compulsive disorder symptoms and repetitive behaviours in autism through questionnaires and observation studies. This is the first study to interview autistic adults about their personal experiences of differentiating between obsessive-compulsive disorder symptoms and repetitive behaviours related to autism. We interviewed 15 autistic adults who experience obsessive-compulsive disorder symptoms. We recorded these interviews and carefully analysed these to find themes. We found some differences between repetitive behaviours and obsessive-compulsive disorder. Participants said repetitive behaviours are part of who they are and what they want to be doing, whereas obsessive-compulsive disorder symptoms conflicted with how they view themselves. Obsessive-compulsive disorder was said to cause negative emotions, while participants said they experience lots of different emotions when doing repetitive behaviours. A similarity participants reported was trying to stop themselves from doing obsessive-compulsive disorder symptoms and repetitive behaviours that other people can see. There was also overlap between obsessive-compulsive disorder and repetitive behaviours. Participants talked about experiences when obsessive-compulsive disorder would take over routines and make them feel more intense and negative. Also, participants’ special interests were sometimes connected to the obsessions they experienced. We conclude that clinicians can use these findings to support conversations with autistic clients in differentiating between repetitive behaviours and obsessive-compulsive disorder symptoms. We also think that further research investigating how obsessive-compulsive disorder symptoms might be hidden by autistic and typically developing people is needed.

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