The Autistic Dream Realms Project, created with Helen from Autistic Realms, is a project in which we share information around being Autistic and OCD, as people with lived experience of both, as an individual (Katie) and a parent (Helen).
General content warnings: mental health, intrusive thoughts, compulsions, ableism.
What one word would you use to describe OCD?
As part of our Autistic Dream Realms Project with me (Autistic and Living the Dream!) and Autistic Realms (Helen Edgar). We asked: If you could describe OCD in one word, what word would you use? And you said…
Misunderstood, control, futility, torment, restrictive, frightening, never-ending, consuming, exhausting, intrusive, a nightmare, time-consuming, detrimental, annoying, embarrassing, agonising, unyielding, frustrating, torture, hurtful, controlling, cruel, scary, a thief, distracting, compelling, savage, Hell.
Thank you everyone who shared these with us, its really quite powerful. Even with just one word to describe your experiences of OCD. Helen and I are going to write some poetry and make some inforgraphics based on that.
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[ID: a head and shoulders video of me, a large white person, with short hair and large round glasses. I am wearing a light green top and sitting in front of a beige wall]
I wasn’t sure how to end the video as my videos are usually more cheery than this. Thank you so much to everyone who shared their experiences.
OCD, and Autistic experiences of OCD, are very rarely spoken about. It’s taken me over 30 years to really start looking at and talking about my OCD (although late diagnosis has not helped me with this either).
I can talk about being Autistic and ADHD all day long, even anxiety and PTSD are easier for me to talk about that OCD. I think what I’d like to get out of this project is to understand why so many of us are silent in our struggles, what are we worried about? And what can we do to make sure we are understood and supported by others?
It’s a personal journey for me and I’m glad so many wonderful people are coming along with us on our Autistic Dream Realms project.
Also! If anyone from the OCD community has something they’d like us to cover please feel free to comment or DM me.
How do you manage your OCD?
Autistic Realms and I asked you: what works well for managing your OCD? And you told us…
- Forgiving myself for my thoughts. Sometimes I shake my head like an etch-a-sketch to give myself a physical indication that I disagree with my thoughts.
- Keeping my general level of anxiety down; challenging my beliefs around the situations and feelings where my intrusive thoughts affect me.
- Talking about thoughts which used to trap me with shame. Understanding that those thoughts that hurt me are hurtful precisely because they are against who I am.
- I have to distract myself somehow. Sometimes I tell myself “Let’s try something new!” Then proceed with what I am doing but with a new mindset that it’s an ‘adventure.’
- My kids help a bit as I have to prioritise them over what I do.
- Learning to label it as OCD, practicing response prevention, and asking myself “does what I’m thinking of doing next move me towards recovery or make my OCD worse?”
The above text in black across 6 light pink slides within speech bubbles. At the top of each slide is the question: What works well for managing your OCD? At the bottom reads: An Autistic Dream Realms Project. Two circular logos of Autistic and Living the Dream, and Autistic Realms are stacked at the bottom right of each slide.
Demystifying OCD and Autistic experiences
This blog is a reflection on the community answers to: If you could let people know one things about OCD, what it be? Autistic Realms has also reflected on what the community shared.
There are many misconceptions around autism and OCD as two individual neurotypes. The prevailing idea of Autistic embodiment is still stereotyped into white, male, speaking individuals who are socially awkward, with a high IQ. This is the case for some Autistic people, of course, but this invalidates a great many more of us who then have issues with being formally identified or supported (if there was any support to be had!).
OCD is often misunderstood as extreme fastidious, in which everything needs to be ordered and sterile. Although this is the case for some OCDers, it is not the only subtype of OCD, and it is does not match the cute idea of being ‘fussy’ which many people believe it to be. As several people from our Autistic-OCD community commented:
“It’s more than just cleaning obsessions and checking doors and switches, it’s the constant intrusive thoughts about my own mortality…”
“It’s definitely something that not a lot of people really understand.”
“Most people don’t understand how debilitating it is. Not just inconvenient.”
Alongside the potential need for things to be kept uncontaminated and orderly, which in themselves is debilitating, many of us also worry about personal safety and / or that of others. All areas of OCD (be they contamination, “just right”, harm or any other OCD) need to be taken seriously, as many of our behaviours are due to feeling insecure and unsafe.
Unfortunately, these feelings are felt by many Autistic people, especially those of us who have experience of trauma. The two together can make obsession and compulsions more intense, as several Autistic-OCD community members suggested:
“Living with both feels like you’re having a constant battle in your head. Going through absolute Hell with it at the minute and struggling to function and make it through the day.”
“The sensory issues that come with autism also fill the mind, stimulating the OCD and causing an even worse sensory overload.”
“The two [autism and OCD] are really difficult to tell apart and don’t always play nicely together!”
These individuals explained how Autistic embodiment and OCD behaviours can affect one another, usually in negative ways. The ‘battle in your head’ can make us restless and anxious, which can make obsessions and compulsion behaviours more intense in frequency and duration.
The Autistic-OCD mind can get stuck in monotropic circles which are very difficult to escape and can cause downward spirals of poor mental health (more on monotropism here). One community member shared that there is no respite to their thoughts and behaviours, and that their “Autistic routines and rituals can be helpful, my OCD ones are making me severely mentally and physically unwell.”
Similarly, another individual suggested that their routines and stims got ‘cancer’ due to OCD. The ideas and tools which we use to help our Autistic selves can sometimes be overtaken by OCD – our routines can become obsessions, and our regulatory behaviours (such as stimming) can become compulsive actions which are used to reassure us that the intrusive thoughts will not come true.
It can be difficult to tell Autistic and OCD experiences apart – routines and rituals can look very similar from the *outside* but they are very different for the person experiencing them!
- Predictability brings comfort
- Routines can be helpful by keeping us ‘on track’
- Can reduce anxiety and use of spoons
- Lists, timelines etc can help with memory and other executive functions.
- They can be difficult to divert from or be interrupted
- Rituals are based on fear
- They are often unwanted and unhelpful
- They can be unruly and take up alot of time and energy
- They ‘help’ in the short term but create worse long term mental health
- When interrupted or stopped these rituals often need to be started again
If you could let people know one thing about supporting someone who is OCD and Autistic, what would it be?
Autistic Realms and I asked a question of the OCD and Autistic community (and those who care for us):
If you could let people know one thing about supporting someone who is OCD and Autistic, what would it be?
And you shared:
- Validate their emotions and narrate your thoughts with empathy. Validation is a very strong tool.
- My one recommendation: Focus on reducing overwhelm with dedicated low demand time and being mindful of sensory needs
- I’ve found autistic routines help my children they provide consistency & predictability and lower anxiety but ocd rituals are disabling and cause heightened anxiety.
- I hope every day that today will be the one when we can see small shoots of hope. I start each day with fresh hope but sometimes it’s so hard and I grieve for the life he should have.
- Listen and validate experiences
- Work with them and not instead of them
- Acceptance of their authentic autistic self – sadly this feels ‘radical’ due to the ignorance of medical and education professionals as well as wider society.
- Investigating my own emotional dysregulation as a parent and working on it (children pick up on others’ anxiety)
- The thing that seems to help them the most is for me to stay calm and level headed. No judgement. No ‘oh don’t be silly’. Doing what I can to make life easier for them and to give them a break from their own brain.
- Be patient
- My best advice is to leave things alone. My son is very particular about his things. He likes his things a certain way.
- People need kindness and friendship above all else
- You do not have to vilify the ocd. Many ‘treatment’ approaches suggest naming it a bully or beast to be beaten with structured ERP. This was super upsetting for my highly empathic yp. Instead, we talked of ocd as an over protective friend who has got things abit wrong, and sees danger where there isn’t any. We treat ocd with compassion and kindly teach it that there’s no danger, just the fear feelings. Which with support and tiny steps, we can manage to live alongside it.
- That it can be debilitating for the autistic person experiencing OCD and their family.
- Breathe. However frustrating you may find their need to do something, it is much more frustrating for them and causes more anxiety if they can feel your frustration shining through.
- Ocd can also be getting stuck in an emotional loop…..it takes time , patience and heart!
- Validating childrens emotions and feelings plays an essential role
- Be patient, give them time and lots of love. Make them know that you understand what they are going through and how hard it is.
- Try to talk about ocd as an over-protective friend who has got things abit wrong, and sees danger where there isn’t any. Treat ocd with compassion and kindly teach it that there’s no danger, just the fear feelings, which with support and tiny steps, we can manage to live alongside.
- Try and keep reminders of times when you’ve shown OCD there was nothing to fear.
- Put “Positivity Post-it notes up” to read when OCD becomes too loud some days.
- We talk openly about the journey being bumpy. Ocd is louder on days they’re poorly, tired or managing changes. It’s about teaching them to look for meaningful opportunities to teach about OCD.
- It’s about supporting your young person to identify what they’d like to do that OCD is currently preventing and then finding small manageable steps to get there.
[ID: slides have pale green backgrounds with black text which reads: OCD and Autistic. If you could let people know one thing about caring for an autistic person experiencing OCD what would it be?
At the centre of each infographic is one community comment, following the text above.
At the bottom of the page is a circular Autistic and Living the Dream logo opposite the Autistic Realms logo with an infinity symbol in between. Black text between them reads: An Autistic Dream Realms Project]
If you could let people know one thing about being OCD and Autistic, what would it be?
Autistic Realms and I asked a question of the OCD and Autistic community, and those who care for us, I asked you all:
If you could let people know one thing about being OCD and Autistic what would it be?
• My OCD is largely driven by long-term stress and bottled-up anxiety and anguish. Outside of that it fades into the background.
• My weirdness hurts me a lot more than it hurts you.
• It doesn’t make you any less of a person. You are enough. You are not your thoughts.
• It’s like healthy routines, stims and mental wellness rituals get “cancer” and become debilitating.
• It’s more than just cleaning obsessions and checking doors and switches. It’s the constant intrusive thoughts about my own mortality, catching cancer and checking for lumps and symptoms etc.
• Living with both feels like you’re having a constant battle in your head. Going through absolute Hell with it at the minute and struggling to function and make it through the day.
• It feels like it never ends. My Autistic routines and rituals can be helpful, my OCD ones are making me severely ,mentally and physically unwell.
• It’s definitely something that not a lot of people really understand.
• It can be quite harmful when the term “everyone is a bit OCD or Autistic” is thrown at you. Er, no that’s not how it works.
• Glad there are pages like this that help to bring the reality to light.
• Can I also add ADHD into the mix? Then it becomes hard to also stick to the routines and having things how you like and need them because you are always then forgetting what you were pre-doing.
• Let us take our time. If we’re checking something over and over again don’t tell us to stop, or that we’ve already checked that, you may think it’s helping but it actually makes things worse and it makes our mind more full, stimulating the OCD.
• The sensory issues that come with autism also fill the mind, stimulating the OCD and causing an even worse sensory overload.
• Most people don’t understand how debilitating it is. Not just inconvenient.
• The two are really difficult to tell apart and don’t always play nicely together!
• That living with it is what is valid regardless of whether a ‘professional’ has actually given a diagnosis (which is hard AF to obtain). Diagnosis is a privilege.
• I realised I was OCD because other people pointed it out to me as I had really struggled with them being in my space because of my OCD tendencies.
• I’ve always been checking things are ‘safe and secure’ ever since childhood. I always want to leave things as I found them, and if everything is ‘in its place’, I feel safe.
• Autism (to me!) feels like a mishmash of other Neuro-Divergences. Like a tree with branches and mini branches and leaves branching out.
[ID: slides have various coloured backgrounds with black text which reads: OCD and Autistic. If you could let people know one thing about being Autistic and OCD what would it be?
At the centre of each is one community comment, following the text above.
At the bottom of each page is a circular Autistic and Living the Dream logo opposite the Autistic Realms logo. Black text between them reads: An Autistic Dream Realms Project]