Updated: May 22
It is becoming evident that there is still a great deal of stigma around OCD, there is a quietness and it is rarely talked about. There is a thriving online Autistic community, although there is still so much misunderstanding, that community is very hard to find when trying to gain support for autistic OCD experiences. Statistics show that the prevalence of being autistic with OCD is relatively high. CD commonly co-occurs amongst autistic people; research from 2015 found that 17% of autistic people also had OCD. The rate of OCD in the general population is 1.6%. The difference between these statistics is stark and it also means that there are a vast number of autistic ocd people struggling and a great number of parents also possibly feeling very stuck trying to support their autistic children struggling with OCD.
The support networks that have grown around autism and some other neurodivergences are amazing, we feel we need more conversations about OCD to raise awareness and enable support networks for OCD to grow too and especially around the intersection of autism and OCD.
The autistic OCD adult community appears to be a bit more open to discussing OCD compared to parents caring for autistic OCD young people (from the social media platforms we have posted on). This difference may be due to many reasons but it is worth reflecting on, and we hope that some of our posts can help raise awareness and conversations within the community about being Autistic & OCD to provide support.
We are optimistic that there is a wealth of lived experience that can help others in similar situations, and we would like to thank everyone that has contributed so far.
We hope you find some of the stories shared validate and resonate with you, and maybe you will find some glimmers of hope and new ideas to try to help manage OCD. The experience 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 the divide, not only within the autistic/OCD communities but also between the lived experience of autistic adults experiencing OCD and parents/carers supporting their children with OCD so we can help and learn from each other. Here is the link to Katie's Autistic Dream Realms OCD project on Autistic and Living The Dream's website:
Link to Autistic Realms, Autistic Dream Realms OCD project can be found here:
**Article written from my lived experience as a parent and teacher. Knowledge gained through various personal research and neurodivergent communities. Autistic Realms is a space for parent support and teacher guidance. I am not a medical professional or therapist**