Autism and OCD together

My grown-ups explain that because I’m autistic, my brain sometimes sees the world with extra-special detail. This is amazing for things like finding patterns or remembering tiny facts! But it also means my brain really, really likes predictability and things to stay the same. When things change, or aren’t quite right, it can feel very uncomfortable or even a bit scary.

When this feeling gets super strong, it’s like my brain gets a message that says, “Warning! Something is wrong or not safe! You must fix it!” My grown-ups say this is where my brain is acting with a little bit of OCD (Obsessive Compulsive Disorder). And then my brain just can’t stop thinking about it until it feels fixed. It’s not that I want to do these things over and over; it’s that my brain tells me I have to, or a bad feeling will stay or something bad might happen. It’s very hard to ignore.

These are the big, insistent thoughts that pop into my head and won’t leave. My grown-ups call them “obsessions.” They often start with “What if…?” and they make my brain feel all tight and worried. My grown-ups tell me that these worries that get stuck are the obsessions part of my OCD (Obsessive Compulsive Disorder). These worries can be about things like germs, keeping my things in perfect order, or making sure I didn’t forget something important. It’s like my brain gets stuck on a song that plays over and over, and I can’t make it stop. Some examples of my “What If” Worries are as follows:

Then I feel like I have to wash my hands over and over until they feel completely clean.

Then I worry that something bad might happen, or that my whole room will feel messy inside my head.

Even if I just checked, my brain tells me I need to check again and again, like checking if the door is locked even if I saw my grown-up lock it.

My brain might get stuck on a certain color that feels “wrong” or a number that doesn’t feel “even,” and it makes me feel very uncomfortable until it’s changed.

When my brain gets those big “what if” worries, my body sometimes feels like it has to do certain actions to make the worry go away. My grown-ups call these “compulsions.” It’s like my body is trying to make my brain feel safe again. These actions are like a secret set of instructions that I feel I have to follow, even when I don’t want to. It’s hard to stop these actions, even when my grown-ups tell me it’s okay. My brain just won’t let me.

I might spend a long time lining up my crayons, or my cars, or my shoes, until they are in a perfectly straight line or a perfect pattern.

I might check if the stove is off, or if my backpack is packed correctly, or if my light switch is really, really off, many times.

I might feel like I have to say a word a certain number of times, or tap my foot in a certain rhythm, to make a bad feeling go away or prevent something bad from happening.

My books, my clothes, even the food on my plate might have to be arranged in a very specific way before I can start.

This part is very important, because this is where my brain gets really, really tricky for grown-ups to understand.

My grown-ups know that my brain really, really loves things to be a certain way because it feels comfortable. Like when I line up my toys, I do it because it feels good and looks nice. It helps me feel happy and calm. My brain just loves patterns and order.

But my OCD is different. My grown-ups told me that when my brain gets a big “what if” worry, it makes me do an action to try and stop a bad thing from happening. I don’t do it because it feels good. I do it because my brain is scared, and it tells me I have to.

This is the confusing part. My grown-ups say sometimes an action that I used to do for fun, like lining up my toys for my autistic brain, can get taken over by my OCD. Then, what used to be a fun activity becomes something my brain feels compelled to do out of fear. That’s when my grown-ups get confused, because they’re not sure if I’m doing it because it feels good or because I’m scared. But I know the difference in my heart.

When my brain gets stuck in these “what if” worries and “have to” actions, it makes my day feel very tricky and sometimes very long.

• It takes up all my time: I might spend so much time lining up my toys that I don’t have time to play with them. Or I might be late for school because I couldn’t stop checking my backpack.
• It makes me tired: Doing the same things over and over makes my brain and body feel very tired. It’s like running a race that never ends.
• It makes me feel worried and frustrated: The feelings of not being able to stop, or the fear that something bad might happen, can make me feel very anxious or even grumpy.
• Grown-ups sometimes get confused: My grown-ups might not understand why I have to do these things, and sometimes they get impatient. That makes me feel sad and misunderstood.

Even when my brain feels stuck, my grown-ups and I are learning some really good “unstuck” helpers. These are the things that make my brain feel a little safer, so it doesn’t have to keep doing the “have to” actions as much.

So, that’s my story about when my brain gets stuck. It can be tricky, and sometimes very hard to stop. My biggest wish for grown-ups is this:

Please understand it’s not my fault when my brain feels stuck. It’s a very strong feeling, and it makes me do things I sometimes don’t want to do. Thank you for being patient and for helping me find all my “unstuck” helpers. Because more than anything, I just want my brain to feel calm and safe, so I can have more time for playing and learning, and for all the adventures of the day.

Thank you for journeying with Mia into the complex world of autism and OCD together. Her honest words illuminate how deeply intertwined sensory sensitivities, a need for predictability, and intense anxieties can lead to repetitive thoughts and behaviors for autistic children. What might appear as rigid or defiant actions from the outside is often a child’s intense effort to regulate their internal world and find a sense of safety.

We hope Mia’s story has offered invaluable insights, fostering deeper empathy and equipping you with practical ways to support the autistic children in your lives when their brains get “stuck.” With patience, understanding, and the right “unstuck” helpers, we can empower them to navigate these challenges, giving them more freedom and joy in their daily lives.