This is an update from May 2023, part way through the Autistic Dream Realms project. You can read about the whole project in The Autistic Dream Realms Project.
Katie from Autistic and Living the Dream and I have been continuing our #AutisticDreamRealms project, sharing lived experiences of being Autistic and OCD.
It is becoming clear that there is still a great deal of stigma around OCD. There is a quietness around it, and it is rarely talked about. We have a thriving online Autistic community, but when it comes to finding support for Autistic OCD experiences, that community can be very hard to find.
Yet OCD commonly co-occurs with Autism. A meta-analysis found that around 17% of Autistic children and young people also met the criteria for OCD (van Steensel et al., 2011), compared with roughly 1 to 2% of the general population (Ruscio et al., 2010). A large Danish study also found that Autistic people were about twice as likely to be diagnosed with OCD later in life (Meier et al., 2015). The difference is stark. It means there are a great many Autistic OCD people struggling, and a great many parents who may be feeling very stuck as they try to support their Autistic children with OCD.
The support networks that have grown around Autism and other neurodivergences are amazing. We feel we need more conversations about OCD too, to raise awareness and help support networks grow, especially around the intersection of Autism and OCD.
From the social media platforms we have posted on, the Autistic OCD adult community seems a little more open to talking about OCD than parents caring for Autistic OCD young people. There may be many reasons for this, and it is worth reflecting on. We hope some of our posts can help open up conversations within the community about being Autistic and OCD, so more people can find support.
We are hopeful that there is a wealth of lived experience out there that can help others in similar situations, and we want to thank everyone who has contributed so far. We hope some of the stories shared validate and resonate with you, and that you might find some glimmers of hope and new ideas to help manage OCD. The experiences of Autistic adults living with OCD could be really valuable for parents trying to support their Autistic OCD children too.
I feel this project, in its own small way, is helping to bridge a divide: not only within the Autistic and OCD communities, but also between Autistic adults with lived experience of OCD and the parents and carers supporting their children, so that we can all help and learn from each other.
Read more
- The Autistic Dream Realms Project on Autistic Realms
- Katie’s Autistic Dream Realms project page on Autistic and Living the Dream
- Monotropism, Autism and OCD
Written from my lived experience as an Autistic parent and teacher, and from knowledge gained through personal research and neurodivergent communities. I am not a medical professional or therapist.
References
Meier, S. M., Petersen, L., Schendel, D. E., Mattheisen, M., Mortensen, P. B., & Mors, O. (2015). Obsessive-compulsive disorder and autism spectrum disorders: Longitudinal and offspring risk. PLoS ONE, 10(11), e0141703. https://doi.org/10.1371/journal.pone.0141703
Ruscio, A. M., Stein, D. J., Chiu, W. T., & Kessler, R. C. (2010). The epidemiology of obsessive-compulsive disorder in the National Comorbidity Survey Replication. Molecular Psychiatry, 15(1), 53–63. https://doi.org/10.1038/mp.2008.94
van Steensel, F. J. A., Bögels, S. M., & Perrin, S. (2011). Anxiety disorders in children and adolescents with autistic spectrum disorders: A meta-analysis. Clinical Child and Family Psychology Review, 14(3), 302–317. https://doi.org/10.1007/s10567-011-0097-0
