“My child with autism keeps wetting the bed! I’ve removed drinks before bedtime, don’t allow snacks after 8pm and make them go to the bathroom before bed. They still don’t get out of bed when they have to go! What do I do??”
This is a question I see frequently — on social media and and forums. The parent asking never receives an answer they can do something with, and they’re left struggling by themselves. Bed-wetting is a sensitive topic, even for autistic adults. Because wetting the bed can happen no matter your age.
Reasons autistic people wet the bed
1. Lack of control
Autistic people thrive in routine, which helps them feel like they’re in control. Autonomy and agency also add to feeling like they are in control of their lives. If their feelings or observations are being invalidated, that counts as a loss of control because it affects their perception of reality.
Thanks to autism masking, autistic people experience depersonalization — the feeling that their thoughts or feelings are not their own. Masking causes us to have no sense of self and numerous identity crises because who are we after the mask?
Non-autistic children tend to have more autonomy than autistic children, because they’re not “obviously” different to everyone else. Autistic children often want more control over their lives than non-autistic children, and not being allowed that causes them to feel out of control.
Lacking control can also look like not being listened to when you speak up. Your feelings are invalidated, and you’re told to stop being dramatic. This stresses the system. Being misunderstood/ignored/not heard is the top reason autistic people want to unalive themselves.
Anxiety in relation to autism is not typically related to general anxiety, or an anxiety disorder. I don’t experience anxiety, but I grew up surrounded by anxious family members.
My anxiety happens as a direct result of autistic traits or unmet autistic needs.
- I feel anxious about driving on the road because I don’t know if people are going to be aggressive or patient. I’m a patient, safe driver and would rather stop in the left lane while waiting for someone to turn left than pass them with incoming traffic, because I have awful spatial awareness.
- I feel anxious when conversations change course, because they no longer match what I rehearsed in my head and I don’t know how to react. My brain processes verbal information slower than non-autistic people, so I need time to prepare beforehand. This is why I’m better at writing.
- I feel anxious when I’m overwhelmed in public and need to stim, because I know stimming will be met with strange or concerned looks. Autistic masking is a survival instinct, to keep me safe, but stimming helps me self-regulate. But non-autistic people mistake stimming for violence, even if it’s harmless, because it’s annoying or makes them feel uncomfortable — and they are not so forgiving when you’re clearly an adult.
- I feel anxious when people impose their ideals on me for the sake of fitting in, “because that’s how it’s done” and not at all entertaining the fact that life is only like this because we let it be, because of the crab mentality that keeps everyone in the bucket. Except I wasn’t born inside the bucket, so I never fit into it like everyone else. It reminds me that I’m only acceptable, loved, listened to and validated when I am masking — pretending to be a zombie.
I do not feel anxious about:
- so many things I “should” worry about
- things other people worry about regarding me
- running late, except to the vet
- the future (I actually look forward to it??)
- current struggles
- how I make other people feel
- whether other people are comfortable with how I live my life (healing loudly, autistic pride, LGBTQ+, walking my cat, etc.)
So you might not be able to pinpoint your child’s source of anxiety as easily, because their anxiety might not look like non-autistic children’s anxiety — which means it isn’t going to be listed in the DSM-5.
Many autistic individuals experience alexithymia, which is impaired interoception. Interoception is the ability to identify one’s feelings.
I only know how to articulate this well via two personal stories.
Warning: These allude to child abuse.
When I was second grade, I would wet my pants in class a lot. My mom always got upset with me, yelling at me about it and telling me that it would be my fault for getting bullied. She and my stepfather made me feel guilty about wanting to wear Goodnites to school, for accidents, because kids my age didn’t do that (apparently).
According to her narrative, I refused to go to the classroom bathroom that was literally behind my set when I had to go, because I was lazy. She’d ask me if I enjoyed sitting in my own pee, if I enjoyed the smell. She asked me if I’d prefer everyone to watch me while I peed my pants.
The way I remember this experience: I didn’t know I had to go. I didn’t even know my pants were wet. I was so focused on being normal, on fitting in, and on being invisible. If I was invisible, I wasn’t annoying anyone. If I was invisible, I wasn’t a burden to anyone. If I was invisible, no one noticed if I screwed up just a little bit. I was masking my autism to the point of feeling numb.
A similar experience happened to me when I started menstruating.
I wet the bed a lot as a child. I still wet the bed as an adult sometimes! It took me years to unlearn the shame my parents inflicted on me.
At the time, I could not explain well that I was not in control of what happened to me while sleeping. I was terrified of the dark, but my stepfather didn’t allow a nightlight because I needed to “grow up”. He felt the same about me watching and interacting with Blue’s Clues in middle school.
So there was anxiety mixed in there, but…I also just was not in control of my bodily functions, nor did my brain wake me up when I had to go.
My bed-wetting trauma is rooted in abuse. My parents thought that the best way to teach me how not to have pee-related accidents was to make me sit in my wet clothes, sleep on my wet mattress, and let them watch me while I forced my bladder to empty into the toilet.
Dreaming that I have to pee
The way MY interoception works when I’m sleeping these days — which took a long time for me to realize and a lot of lucid dreaming research — is through dreams. I’ll dream that I’m in water, or drinking water, or something to do with water.
Sometimes my dreams are more along the line of orgasms, because that’s what peeing feels like for me sometimes.
Other times, I will gasp out loud before I awake, and this is not because I’m having an orgasm in my dream but because I’m mentally doing the Gotta Pee, Gotta Pee, Gotta Pee Right Now song in my head.
My brain reacts the same way to needing to pee right now as it does approaching orgasms. Not proud of it, but ’tis what ’tis.
Stress and anxiety overlap in a lot of places, but stress can exist without anxiety.
I stress over financial problems, but I’m not anxious (extremely worried) about them most of the time.
I stress over family relations, prejudice and discrimination.
I stress when family doesn’t understand me and refuses to listen to me, when they tell me my feelings are incorrect, when they tell me I’m being ungrateful because my boundaries do not match their expectations.
5. Medical reasons
Incontinence is not the same as the above reasons. It’s also not the only medical-related reason an autistic child might wet themselves or the bed. You will need to work with a medical professional to determine a cause.
Inline with medical reasons, however, is the bladder limit. Forcing oneself to empty their bladder before it is actually full causes the bladder to think that it is actually full sooner than its original limit. The bladder is learning that, even though it just emptied, it needs to empty again even if it’s not full. It learns to perceive that as being full.
Limiting food/drink before bed does not help
I’ve written about how to help autistic children fall asleep, and food/drink is on the list as a suggestion!
In my experience, not drinking or eating anything before bed didn’t help me. Here is what I noticed:
- I’m more likely to wet the bed when I’ve been drinking multiple sodas or cups of tea a day in the past week, but I don’t wet the bed when I drink one or two a day a few days a week.
- I’m more likely to wet the bed when I don’t have a drink on standby, because drinking water helps me cool down but dehydration causes me to sweat — which makes me have to pee, but I won’t be able to wake up until I’ve peed at least a little bit, because it’ll all feel like a dream. (see interoception)
These reasons don’t apply to all autistic people, but they are the most common ones I’ve seen in regard to the topic.
If you loved this post, please share or buy me a pretzel:
i’m an autistic young adult whose only recently come to terms with my diagnosis and reading your blog has really helped me with recognizing the experiences i had as an undiagnosed autistic child and to feel affirmed and no longer in the dark about myself…thank you for your openness and vulnerability
Thank you for your comment! <3
Thank you for this. My boy just turned 8 and struggles mostly when he’s at his dad’s house (where he is not understood and forced to be “normal”). Thank you for validating our experiences with your own.
I so appreciate you sharing your experiences! I am the mother of a 29- year- old son that is on the spectrum. He is very quiet and keeps to himself (unless he’s talking about his special interests which I have trouble relating to, but his father does great with). It is always helpful for parents, and society as a whole, to hear the perspective of those that identify as neuro-diverse so that we can be more accommodating and accepting. Everyone’s experience is different, but you are giving voice to things that some haven’t even considered. I am so sorry to hear that your parents weren’t kind, I hope they have changed and learned from you. You are making a difference and that is huge.
Wow, this has helped me tremendously! Thank you for taking the time to write this with so much honesty, vulnerability, and care! I’m exploring your site and excited to read more from you!