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Autistic Dream Realms

The Autistic Dream Realms Project, created with Katie from Autistic and Living the Dream is a project in which we share information about being Autistic and OCD, as people with lived experience of both, as an individual (Katie) and a parent (Helen) to help demystify Autism and OCD.

General content warnings: mental health, intrusive thoughts, compulsions, ableism.

Autistic and Living the Dream 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 supporting someone who is OCD and Autistic, what would it be?
 

And you shared:
 

  • Be patient.

  • Breathe.

  • 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.
     

  • 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 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 the communities comments. One comment per slide. Following the alt text provided 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 and Living the Dream and I asked a question of the OCD and Autistic community, and those who care for us, Katie asked you all:
 

If you could let people know one thing about being OCD and Autistic what would it be?
 

And you shared:
 

• 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 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.

 

• 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 infographic is the communities comments. One comment per slide. Following the alt text provided above.

At the bottom of the 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]

August 2023

We asked people to share one word to describe OCD. We had a great response online as people shared some very powerful words to describe OCD. I shared these words on a poster (see below) and created a poem using some of the words. 

Katie Munday from Autistic and Living the Dream created and shared a video monologue of the words shared across their social  media platforms. 

Ocd poem .png
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