What is OCD? OCD (Obsessive Compulsive Disorder) affects people in different ways. The World Health Organization (WHO) has ranked OCD in the top ten of the most disabling illnesses in terms of lost earnings and diminished quality of life. Many people in the neurodivergent community view OCD as a neurodivergence OCD is a different way of thinking and processing. If you are Autistic, being in an understanding, flexible, low-demand, supportive environment can make a huge difference to help make OCD more manageable (alongside potential therapy or any medication that may be needed for some people).
OCD and Autism According to data from the International OCD Foundation (IOCDF): About one in 100 adults currently have OCD. About one in 200 children and young people currently have OCD. Research from Meier et al. 2015, showed that 17% of Autistic people also have OCD and further research from Martin et al. 2020, shows that between 17% and 37% of autistic young people also have OCD. This likely only reflects the tip of the iceberg, and there is a desperate need for a deeper understanding of autism and OCD so people can be supported through a non-pathologising lens. According to IOCDF sources, children generally live with their OCD for an average of two and a half years before getting help from a professional. A survey of adults with OCD reported that it took an average of 14 to 17 years to find effective support. Between 2% and 4% of all children will develop OCD before adulthood. That is about the same number of children and young people allergic to peanuts!
(IOCDF)
Rituals vs Routines
OCD rituals differ from Autistic routines. If you are Autistic OCD, it can be more tricky to untangle this for yourself or with your child. From our experience of talking to people from within the Autistic community, Autistic routines are helpful, and OCD rituals aren’t.
Rituals are compulsions an Autistic OCD person feels they HAVE to do rather than what they WANT to do.
Obsessions and compulsions can take up a lot time and get in the way of important activities the person values, like going to work or school. For some people, it can be utterly disabling, severely impact their quality of life, and render them housebound.
Common Obsessions can include:
· Contamination
· Perfectionism
· Harm coming to oneself or others
· Unwanted intrusive thoughts
· Religious obsessions Common compulsions can include:
· Frequent, excessive washing and cleaning
· Frequent, excessive checking
· Mental compulsions (e.g., counting, praying, and reviewing)
· Reassurance seeking
· Avoiding situations that may trigger obsessions
People cannot just ‘snap out of OCD’, no matter how often others ask them to stop their rituals. Much like many other difficulties Autistic people experience, if they could, they would. It is not as easy as ‘just’ stopping’!
Ideas to help
We need more people talking about being Autistic OCD or their experiences of caring for Autistic OCD people, the difficulties and also the positives of managing their lives and ways of making things a bit easier. From discussions in community groups many people find adopting a low-demand approach can help, and having lots of time and flexibility in life will help to reduce anxiety, which can help reduce the torment of OCD.
There is a shocking lack of understanding about Autistic experiences and even less about Autistic OCD experiences. I have not found a specific neurodiversity-affirming support group for Autistic OCD people in the UK, and I haven’t sourced a support group for neurodivergent parents/carers of Autistic OCD young people either. If you do know of any, please do get in touch, as I would love to be able to share this with others.
Autistic Community
A low-demand approach can help lower anxiety in the home for many autistic young people, which is likely to help make OCD a bit easier to manage. Being part of the Autistic community, sharing stories, opening conversations and talking about being Autistic OCD or a carer of an Autistic OCD person will hopefully create a positive ripple effect of validation and support.
Katie Munday (Autistic and Living the Dream) and I have been working on a community project throughout 2023 to help develop an understanding of Autistic OCD through lived actually Autistic OCD experiences and those of parents/carers supporting people. You can find out more about Autistic Dream Realms projects here& join in this week's campaign where we will be sharing #OCDTruths as part of International OCD Week 2023 : www.autisticrealms.com/autisticdreamrealmsproject
And also
Signposting Please seek professional advice if you have any concerns about your mental health or the mental health of someone you support. For OCD-specific support, please reach out to: www.ocdaction.org.uk www.ocduk.org For further information and signposting about Autistic OCD experiences, please have a look at the websites of : Emergent Divergence www.emergentdivergence.com Autistic and Living the Dream www.autisticltd.co.uk
Autistic Realms www.autisticrealms.com