u/Winchester_098

I am a high-functioning autistic male, a young adult in college, and I would like to share my story. I will preface everything I say with this: I have encopresis and wet the bed often. I wear diapers day and night to manage these conditions. Incontinence is a silent disability that often occurs jointly with preexisting disabilities. You may feel that because of incontinence you can’t go out anymore, or you plan trips with friends around where the restroom is, or maybe you just don’t socialize at all because you can’t imagine that people will accept all of you. I want to offer encouragement: personal reconciliation and acceptance are possible. However, this is a process that takes time. You have plenty of time to navigate your complex thoughts regarding this. Feel free to reach out if you are inclined to. 

This is a chronicle of my journey toward acceptance. My story begins at a young age. I developed encopresis as a child because I withheld my stool. In elementary school accidents were frequent and noticeable. My mom was incredibly proactive and tried many medical interventions. Each intervention, despite its well intentions, only pushed me further from the restroom. Everything about the school restrooms was hideous, sensorily speaking. The lights buzzed and flickered, the walls were ugly colors, and the stalls were like monoliths that closed in on me whenever I dared to go inside. No matter how much I tried to overcome it, the restroom was a scary place at school and at home. I know it sounds silly, but young autistic children often find the sensation of needing to go, the process of going, or the environment in which they go, unpleasant and thus, they withhold. It's a genuine concern among autistic youth and a large part of why many grow up with bowel dysfunction like I did.

My life became a vicious cycle: constipation, experiencing pain, relieving pain with laxatives, stopping laxative use after a month, wash, rinse, repeat. It continued this way into high school, then I entered college. My mindset changed at this point. I began to think critically about the shame and secrecy that were instilled in me from a young age. It was shameful to mess my pants, but it was worse to sit around and do nothing about it. What if… What if the best and most hygienic option was to wear diapers?

Here is a fun fact: Autism and bladder and bowel dysfunction are linked. Why is this? Well, possibly it comes down to reduced interoception. Interoception is the awareness of bodily signals like pain, hunger, the urge to void, and the sensation of a full bladder. All of these sensations are reduced or even absent in autistic individuals. This makes it incredibly difficult for people like me to maintain continence. Technically, I have bowel continence; if I focus hard on my body signals, they are present but extremely faint. However, I don't spend my day focusing on my body. After all, I have conversations to have, classes to attend, homework to do, and a complex life to attend to. Accidents happen. I have them infrequently because I am proactive in preventing them. But when an accident occurs, it's out of my control. What is the shame in using a tool that helps me manage that? 

Regrettably, it took me a long time to realize that this was the solution: not a complex relationship with the bathroom, but a healthy reliance on protection to catch what I cannot feel, and voiding in the toilet what I can control. I'm not completely incontinent, but I also realize that I'm not fully in control at times, and that's okay; I don’t have to straddle the world between incontinence and continence. I take Miralax because my constipation is chronic. If I don't take it, I get backed up. Unfortunately, Miralax also worsens my problems. Accident occur more frequently when I take Miralax, but its better than constipation. Furthermore, I have developed a healthy relationship with my body. I recognize that my interoception is broken and that diapers are the best way to be proactive and healthy when I can't control my bowels.

People like to fixate on the perception that diapers might stifle opportunity, when the reality is that diapers actually provide freedom from a bladder and bowels that are unpredictable. What is gained in return—freedom from worry, shame, and guilt—is worth whatever risk you weigh in your mind before you put a diaper on. Will people care? Maybe, but it is not likely. Surround yourself with friends who understand and accept you, all of you. There will always be pea-brained people who have something hurtful to say. But the most important way to combat that is to have many more friends who say better things about you and support the real you 100%. You are not alone.

I can only speak for myself regarding autism, but my experience with incontinence broadly reflects what many people who have incontinence or accidents feel. I don’t claim to be a spokesman for a group; take me as a representative of a minority that speaks openly about their experience. The lived experience of incontinence is far too varied for me to accurately represent, but I hope by presenting my story, other people who have similar lived experiences will speak out too. The benefit of openness is the ability to connect with people who relate to your experience. It is incredibly validating to have connect with someone who can say, “I know that feeling!” In those moments, you can deeply exhale and relax because you know you are understood and accepted.

That is what community is built on: shared experience. I hope that if we share our experiences without shame, we can work towards an environment that exists to support, inspire, and provide advice to each other. It is toward this end that I provide my story.

So some background: I am a high functioning autistic male. When I was young I wet the bed heavily. I did not stop wetting the bed until I was about 13. I wore diapers every night as a child it was embarrassing but my quality of life was not deeply affected because I was always told that I would just “grow out” of bedwetting, so I always looked forward to that promise. And you know what? At 13 I stopped wetting the bed. I just ceased wetting at night, suddenly I just knew to wake up when my bladder was full and use the restroom. Granted, there were accidents here and there (like maybe once a month) but it was not an issue like before because the scale of the accidents was minor, like maybe only a dribble of urine or a small wet spot.

Then when I turned 16 everything went downhill. I started having regular episodes of heavy bedwetting again. Not nightly, but about 5 times a month. While that may not seem like a big number get this: As of January this year I have wet the bed 26 times. There have been about 129 I days since the start of this year. So 20% of this year I have been wet. 80% has been dry. But I can’t predict when I’m going to wet the bed. I can’t predict if I am going to wake up and use the restroom. It is very distressing to play Russian roulette with my bladder every night.

Of course am not taking this lying down. I got a mattress protector. I visited my doctor who prescribed me oxybutyn. He increases the dose each time I come back and report zero progress, I don’t know when he’ll stop. But taking oxybutyn sucks. The side effects: constipation, drowsiness, and decreased sweating are terrible for me! I used to set a timer to go off every night at one pm to get me up to use the restroom, but I often found that not only did I already wet the bed by that time, I also couldn’t get back to sleep! And that really took away from my quality of life. As a result my doctor made me stop the timer. He also advised against using a bedwetting alarm because technically I can sense the urge to go 80% of the time and alarms would just kill my sleep if I happened to wet the bed.

Now I’m reaching out to see if there’s anyone with a similar experience. I struggle because I feel like this is a real issue, but the low frequency of accidents also makes me feel like I don’t belong here. I don’t know, I just hope I can overcome this. I haven’t tried every option so maybe there’s still a chance.