My Sleepy Brain: An Autistic Child’s Story of Sleep

My grown-ups say my brain works a bit differently than theirs because I’m autistic. They call it being neurodivergent, which just means my brain processes things in its own special way. Sometimes, that means my brain feels “too much” of everything, especially when it’s time to sleep. Doctors call this sensory and brain overload, and it’s like my brain has too many open tabs, even when I’m trying to relax in my bed.

And that’s why, when it’s bedtime, sometimes these things make my room feel like a giant, noisy, itchy place where my brain just can’t calm down:

• Lights too bright: Even tiny night lights or light from under the door feels like a giant spotlight shining right on my face. It makes my eyes feel wide open, even when I try to close them.
• Sounds too loud: When the house gets quiet, every little sound gets super big! The house creaking, the fan whirring, a faraway car – everything sounds like it’s right next to my ear.
• Textures too weird: My pajamas can feel scratchy, or the blankets might feel bumpy and wrong. Sometimes, even my mattress feels funny, and it’s hard to get comfy.
• My brain won’t stop: My thoughts start zooming like race cars, or numbers just keep spinning in my head! I remember all the things from the day, and it’s super hard to make my brain quiet down.
• My body won’t stop: Sometimes my legs feel tingly, or my arms just want to flap, flap, flap! It’s so hard to just lie still when my body wants to move.

So, grown-ups, please help make my room quiet and dark, and my bed feel super comfy. If you do, my brain might finally calm down for sleep!

Even when my room feels just right, my brain still needs a special sleep map. It’s like a path I follow every single night to get to sleep. My grown-ups help me make sure every step is the same: first a warm bath, then brushing my teeth, snuggling up for a story, and finally, getting into bed. It’s so important that every single thing happens in the same order, at around the same time.

If my sleep map changes, even just a little bit, it feels super confusing and a bit scary. It’s like someone moved all the streets around on my regular map, and I don’t know where I’m going! This makes it even harder for my brain to calm down and get ready for sleep. But when my sleep map stays exactly the same, it feels like a big, warm hug for my brain. I know exactly what’s coming next, and that comfort helps me drift off to sleep.

Even with my comfy room and my perfect sleep map, sometimes sleep is still a bit tricky. It’s not like simply closing my eyes and then poof! It’s morning.

• Sometimes, I lie awake for a really, really long time, even when my grown-ups are already sleeping soundly in their beds. My brain just won’t be quiet enough to go on its sleep adventure.
• Other times, I wake up in the middle of the night and it feels like I’m all alone in the big, dark house. It can feel a bit lost or lonely when everyone else is asleep.
• And once I’m awake, it’s super hard to figure out how to get back to sleep. My brain starts whirring again, and I just don’t know how to turn it off.

When I don’t get enough sleep, the next day feels pretty tricky. It’s like my whole world gets a bit blurry and hard.

• My brain feels fuzzy, like it’s covered in cotton wool. It’s so hard to think, and learning new things at school or therapy feels extra-super difficult.
• I get super grumpy really fast. Little things make me upset, and sometimes meltdowns happen even more easily than usual. It’s hard to be happy when I’m so tired.
• My body feels tired all over. I don’t want to run and play with my friends; all I want to do is just lay down and close my eyes.
• And sometimes, it makes me feel even more “autism-y.” It feels harder to talk to people, harder to look at them, and even harder to deal with sounds or when things change suddenly.

Even when sleep is tricky, my grown-ups and I have found some really good sleep helpers that make a big difference. These are the things that make my body and my busy brain feel safe and calm enough to finally go on that sleep adventure:

• The dark cave: My room has to be a really, really dark cave. Even tiny little night lights or light from under the door feels like a giant spotlight to my eyes.
• Quiet sounds: Sometimes total quiet is best, but other times, a soft, steady sound like my white noise machine or very gentle music helps to shoo away all the other big noises.
• Comfy clothes & blankets: My pajamas have to be super soft, no scratchy tags! And my blankets – sometimes a cozy duvet is perfect, but other times, my heavy blanket feels like a big, warm hug that helps my body feel calm.
• My special bedtime friend: My favorite soft toy or pillow always comes to bed with me. They make me feel safe and not so alone.
• A calming grown-up: It really helps when a grown-up reads me a quiet story, gives me a gentle back rub, or just sits with me for a little while until I feel sleepy. Their calm presence makes me feel safe.
• No surprises: Sticking to my sleep map (that routine!) every single night is super important. When there are no surprises, my brain knows exactly what’s coming, and it can relax.
• Special quiet time: Right before bed, doing quiet things like reading a book, drawing, or gentle play helps my brain calm down. No exciting games or loud TV!

So, that’s my story about sleep. It can be tricky, but it’s super important to me. My biggest wish for grown-ups is this:

• Please understand it’s not my fault when I can’t sleep. My brain just works a bit differently at night, and sometimes it needs extra help to calm down.
• Thank you, thank you for helping me find all my special sleep helpers. Because more than anything, I just want to feel rested and happy like other kids, ready for all the adventures of the next day.

Thank you for journeying through the night with Mia. As adults, truly understanding the intricate dance between autism and sleep isn’t possible without stepping into the unique world of an autistic child. That’s precisely why we asked Mia to share her personal story with you – to illuminate the specific challenges, sensory nuances, and profound comfort needs that often go unseen from the outside.

We hope Mia’s brave and honest words have offered invaluable insights, fostering deeper empathy and equipping you with practical ways to support the precious sleep of the autistic children in your lives. Every restful night contributes to a brighter, more engaged day, helping them thrive in their own wonderful way.