u/leakinprogress

Greetings, fellow autistic people, friends, allies, family, and caregivers! I am one of those autistic guys who has a huge sense of justice and near total disregard for useless social stigma. I decided to lean into some of the advocacy work that is just hard to talk about, especially around incontinence.

Autism and incontinence are very linked, but not necessarily from a physical control standpoint. Dull enteroception - the sense of feeling inside the body like hunger, thirst, pain, temperature, fatigue, etc. - leaves many of us in a space where control over bladder and bowel can come and go. Changing routines, traveling, going to college, and new jobs can all flip a delicate system without much warning. Daytime or nighttime issues with continence may start, stop, change over time, be more or less intense, a fluid system of feelings that don't seem to fit any mold.

If you find yourself skipping events, restricting food and water, scanning for bathrooms (and not just any bathroom, but one that is tolerable to use), worrying about how you will ask the stranger in the aisle seat of a plane to move, losing focus on conversations/class/work because of the mental effort to stay dry, this might be a discussion to you.

Managing incontinence isn't just for those who have no control; an ecosystem of routines and physical assistance that prioritizes health and energy management can make existing in this intense world much more bearable. It isn't an issue of capability; you may very well be able to hold it, but at what cost? And who pays that cost? It's us.

If this hits home for you, please know you are not alone. And this is not your fault nor a failure. This is part of the experience for many of us, and there is so much more to enjoy with a plan rooted in self-understanding and compassion. I posted this originally in r/incontienence which is a wonderful place to get genuine help if you are looking.

Please feel free to reach out to me in the comments or messages if you'd like to talk further. Starting the conversation is tough, but holding internal shame is tougher.

______________

Hey, all. Long-time lurker here that has gotten so much from the open discussions and questions answered. I decided it's time to join in on the fun! Life has recently brought me into individual disability advocacy and discussion that is seeing real change in institutions. I am grateful to be doing work that is so closely tied to dignity and ease of access - especially in ways that I am quite familiar with. Incontinence is one of those things.

A bit of backstory: I'm a guy in my 20s. Urinary incontinence has been something I've dealt with for as long as I can remember. 3-4 wet beds a week, a constant dribble, and a few surprise voids during the day. I don't know the cause of all this medically, but I think it has to do with my (diagnosed) autism. I can't really feel my body most of the time. No hunger, thirst, tiredness, or sense of a full bladder. Combine that with a nervous system that sometimes just sorta does its own thing, and you get a recipe for leaking.

Home life was a bit of a nightmare, and part of that was specifically refusing to use any management tools to keep me dry and comfortable. Beds were left wet for days, and I was adapting my wardrobe to cover the evidence. I tried wearing multiple pairs of underwear, putting a bunch of toilet paper in the front of my underwear, and even some menstrual pads when I could find some. I would sometimes sleep with a towel and plastic grocery bags to stay dry through the night. I missed so much rest and events out of fear of being wet.

I finally took management into my own hands when I went to college. I felt (and still sorta feel) a bunch of guilt because I -could- hold it, but it took all of my attention to maintain. Conversations would fade into the background, and friends would be pushed aside. I tried a bunch of different management tools, from condom catheters to just not drinking anything. I gave myself a kidney stone at 23 after years of skipping hydration to stay dry. I finally settled on diapers because they worked. It took me a long time to discover the brands that really did the job well.

With this management routine, I find peace and comfort. I can effectively turn that worry way down knowing I'm safe if anything were to happen. I sleep better, can focus on tasks, and do more of the things I enjoy. I can even say yes to spontaneous things! All of that comes from something as simple as wearing a diaper. I started actively looking for people like me who shared this experience, and now I have a small cohort of friends to talk with. That, too, is very freeing and comforting. People who get it are so important.

Perhaps this is the autism talking, but I find the social taboo around incontinence to be a total waste of time. The often-negative, awkward reaction overwhelms the subject. I have spent money on clothes that hide leaks and diaper imprints, used protection that was far too small for the task out of discretion, and walk around with this sense of impostor syndrome. But, I wasn't doing that for others, I was doing it for myself.

Incontinence exacts a cost, literally and figuratively. Outings need planning and preparation, changing facilities may be difficult to find, and the supplies need to be carried. Spare diapers, a change of clothes, and a few go bags stashed in places I frequent. If public restrooms had incontinence in mind, I think this could be quite easy and seamless. Learning that parents or caregivers end up having to choose between the floor of a dirty bathroom or the back seat of the car for diaper changes was very upsetting. At that point, it is easy to see how leaving the house at all is a chore.

I dropped my 9-5 job a year ago to pursue disability advocacy, creating spaces of belonging, and translating to stakeholders in the community /why/ accessibility is important. Many places see accessibility as having an elevator. But access doesn't mean dignity or ease. I have been working with youth and adults and incontinence is very common. I've been able to set the tone of my space so that you don't have to hide it for others' comfort, and I really think this can be replicated in other public spaces. If we had the infrastructure to support bodies that do not work on the same schedule as others, that visibility itself would lower stigma as the supports are normalized. I've started to really push for this, and I am finding that community spaces and businesses are willing to overhaul bathrooms (if the funds are there),

I have much more on my mind, but I'll leave it here for now. I'd love to know your story and where you see opportunities to advocate. I'll be bringing these ideas forward as I do my work. I'm not ready to connect my name and public persona to this quite yet, but there really is a good amount of institutional interest at a nationwide (USA) level.

Greetings, fellow autistic people, friends, allies, family, and caregivers! I am one of those autistic guys who has a huge sense of justice and near total disregard for useless social stigma. I decided to lean into some of the advocacy work that is just hard to talk about, especially around incontinence.

Autism and incontinence are very linked, but not necessarily from a physical control standpoint. Dull enteroception - the sense of feeling inside the body like hunger, thirst, pain, temperature, fatigue, etc. - leaves many of us in a space where control over bladder and bowel can come and go. Changing routines, traveling, going to college, and new jobs can all flip a delicate system without much warning. Daytime or nighttime issues with continence may start, stop, change over time, be more or less intense, a fluid system of feelings that don't seem to fit any mold.

If you find yourself skipping events, restricting food and water, scanning for bathrooms (and not just any bathroom, but one that is tolerable to use), worrying about how you will ask the stranger in the aisle seat of a plane to move, losing focus on conversations/class/work because of the mental effort to stay dry, this might be a discussion to you.

Managing incontinence isn't just for those who have no control; an ecosystem of routines and physical assistance that prioritizes health and energy management can make existing in this intense world much more bearable. It isn't an issue of capability; you may very well be able to hold it, but at what cost? And who pays that cost? It's us.

If this hits home for you, please know you are not alone. And this is not your fault nor a failure. This is part of the experience for many of us, and there is so much more to enjoy with a plan rooted in self-understanding and compassion. I posted this originally in r/incontienence which is a wonderful place to get genuine help if you are looking.

Please feel free to reach out to me in the comments or messages if you'd like to talk further. Starting the conversation is tough, but holding internal shame is tougher.

______________

Hey, all. Long-time lurker here that has gotten so much from the open discussions and questions answered. I decided it's time to join in on the fun! Life has recently brought me into individual disability advocacy and discussion that is seeing real change in institutions. I am grateful to be doing work that is so closely tied to dignity and ease of access - especially in ways that I am quite familiar with. Incontinence is one of those things.

A bit of backstory: I'm a guy in my 20s. Urinary incontinence has been something I've dealt with for as long as I can remember. 3-4 wet beds a week, a constant dribble, and a few surprise voids during the day. I don't know the cause of all this medically, but I think it has to do with my (diagnosed) autism. I can't really feel my body most of the time. No hunger, thirst, tiredness, or sense of a full bladder. Combine that with a nervous system that sometimes just sorta does its own thing, and you get a recipe for leaking.

Home life was a bit of a nightmare, and part of that was specifically refusing to use any management tools to keep me dry and comfortable. Beds were left wet for days, and I was adapting my wardrobe to cover the evidence. I tried wearing multiple pairs of underwear, putting a bunch of toilet paper in the front of my underwear, and even some menstrual pads when I could find some. I would sometimes sleep with a towel and plastic grocery bags to stay dry through the night. I missed so much rest and events out of fear of being wet.

I finally took management into my own hands when I went to college. I felt (and still sorta feel) a bunch of guilt because I -could- hold it, but it took all of my attention to maintain. Conversations would fade into the background, and friends would be pushed aside. I tried a bunch of different management tools, from condom catheters to just not drinking anything. I gave myself a kidney stone at 23 after years of skipping hydration to stay dry. I finally settled on diapers because they worked. It took me a long time to discover the brands that really did the job well.

With this management routine, I find peace and comfort. I can effectively turn that worry way down knowing I'm safe if anything were to happen. I sleep better, can focus on tasks, and do more of the things I enjoy. I can even say yes to spontaneous things! All of that comes from something as simple as wearing a diaper. I started actively looking for people like me who shared this experience, and now I have a small cohort of friends to talk with. That, too, is very freeing and comforting. People who get it are so important.

Perhaps this is the autism talking, but I find the social taboo around incontinence to be a total waste of time. The often-negative, awkward reaction overwhelms the subject. I have spent money on clothes that hide leaks and diaper imprints, used protection that was far too small for the task out of discretion, and walk around with this sense of impostor syndrome. But, I wasn't doing that for others, I was doing it for myself.

Incontinence exacts a cost, literally and figuratively. Outings need planning and preparation, changing facilities may be difficult to find, and the supplies need to be carried. Spare diapers, a change of clothes, and a few go bags stashed in places I frequent. If public restrooms had incontinence in mind, I think this could be quite easy and seamless. Learning that parents or caregivers end up having to choose between the floor of a dirty bathroom or the back seat of the car for diaper changes was very upsetting. At that point, it is easy to see how leaving the house at all is a chore.

I dropped my 9-5 job a year ago to pursue disability advocacy, creating spaces of belonging, and translating to stakeholders in the community /why/ accessibility is important. Many places see accessibility as having an elevator. But access doesn't mean dignity or ease. I have been working with youth and adults and incontinence is very common. I've been able to set the tone of my space so that you don't have to hide it for others' comfort, and I really think this can be replicated in other public spaces. If we had the infrastructure to support bodies that do not work on the same schedule as others, that visibility itself would lower stigma as the supports are normalized. I've started to really push for this, and I am finding that community spaces and businesses are willing to overhaul bathrooms (if the funds are there),

I have much more on my mind, but I'll leave it here for now. I'd love to know your story and where you see opportunities to advocate. I'll be bringing these ideas forward as I do my work. I'm not ready to connect my name and public persona to this quite yet, but there really is a good amount of institutional interest at a nationwide (USA) level.

Hey, all. Long-time lurker here that has gotten so much from the open discussions and questions answered. I decided it's time to join in on the fun! Life has recently brought me into individual disability advocacy and discussion that is seeing real change in institutions. I am grateful to be doing work that is so closely tied to dignity and ease of access - especially in ways that I am quite familiar with. Incontinence is one of those things.

A bit of backstory: I'm a guy in my 20s. Urinary incontinence has been something I've dealt with for as long as I can remember. 3-4 wet beds a week, a constant dribble, and a few surprise voids during the day. I don't know the cause of all this medically, but I think it has to do with my (diagnosed) autism. I can't really feel my body most of the time. No hunger, thirst, tiredness, or sense of a full bladder. Combine that with a nervous system that sometimes just sorta does its own thing, and you get a recipe for leaking.

Home life was a bit of a nightmare, and part of that was specifically refusing to use any management tools to keep me dry and comfortable. Beds were left wet for days, and I was adapting my wardrobe to cover the evidence. I tried wearing multiple pairs of underwear, putting a bunch of toilet paper in the front of my underwear, and even some menstrual pads when I could find some. I would sometimes sleep with a towel and plastic grocery bags to stay dry through the night. I missed so much rest and events out of fear of being wet.

I finally took management into my own hands when I went to college. I felt (and still sorta feel) a bunch of guilt because I -could- hold it, but it took all of my attention to maintain. Conversations would fade into the background, and friends would be pushed aside. I tried a bunch of different management tools, from condom catheters to just not drinking anything. I gave myself a kidney stone at 23 after years of skipping hydration to stay dry. I finally settled on diapers because they worked. It took me a long time to discover the brands that really did the job well.

With this management routine, I find peace and comfort. I can effectively turn that worry way down knowing I'm safe if anything were to happen. I sleep better, can focus on tasks, and do more of the things I enjoy. I can even say yes to spontaneous things! All of that comes from something as simple as wearing a diaper. I started actively looking for people like me who shared this experience, and now I have a small cohort of friends to talk with. That, too, is very freeing and comforting. People who get it are so important.

Perhaps this is the autism talking, but I find the social taboo around incontinence to be a total waste of time. The often-negative, awkward reaction overwhelms the subject. I have spent money on clothes that hide leaks and diaper imprints, used protection that was far too small for the task out of discretion, and walk around with this sense of impostor syndrome. But, I wasn't doing that for others, I was doing it for myself.

Incontinence exacts a cost, literally and figuratively. Outings need planning and preparation, changing facilities may be difficult to find, and the supplies need to be carried. Spare diapers, a change of clothes, and a few go bags stashed in places I frequent. If public restrooms had incontinence in mind, I think this could be quite easy and seamless. Learning that parents or caregivers end up having to choose between the floor of a dirty bathroom or the back seat of the car for diaper changes was very upsetting. At that point, it is easy to see how leaving the house at all is a chore.

I dropped my 9-5 job a year ago to pursue disability advocacy, creating spaces of belonging, and translating to stakeholders in the community /why/ accessibility is important. Many places see accessibility as having an elevator. But access doesn't mean dignity or ease. I have been working with youth and adults and incontinence is very common. I've been able to set the tone of my space so that you don't have to hide it for others' comfort, and I really think this can be replicated in other public spaces. If we had the infrastructure to support bodies that do not work on the same schedule as others, that visibility itself would lower stigma as the supports are normalized. I've started to really push for this, and I am finding that community spaces and businesses are willing to overhaul bathrooms (if the funds are there),

I have much more on my mind, but I'll leave it here for now. I'd love to know your story and where you see opportunities to advocate. I'll be bringing these ideas forward as I do my work. I'm not ready to connect my name and public persona to this quite yet, but there really is a good amount of institutional interest at a nationwide (USA) level.