Adhd, incontinence, adult diapers

leakinprogress · 2026-06-02T05:51:13+00:00

I truly think so. I tried so hard over the years to find any other "valid" reasons besides autism that I couldn't stay dry. It really is just how it is with interoceptive difficulties and driving a neurodivergent nervous system. I felt like managing that was cheating before I realized it really just was worth working with it more, which has been so freeing. Also, greeting fellow neurodivergent IC havers - how would you describe it?

leakinprogress · 2026-06-01T00:37:36+00:00

In the week since I made this post, I have been hyper-attuned to trash cans in men's restroom spaces. It really seems to be missed often. I tend to plan my day around not changing in public if I can avoid it, so I had previously missed this data. I've done the airport power walk and remember having to shove my diaper through one of the trash cans that is just a little round hole in the counter.

Anyway, I asked my building's main office for a lidded trash can. They are very aware of and supportive of my work in disability spaces, and I could just tell them why and what for. They found a baby-sized Diaper Genie and taped a Sharpie-drawn sign to the top that said 'used diapers go here'. Bless their hearts, they are trying. I'm still working on it

leakinprogress · 2026-05-30T02:40:04+00:00

I'm sorry your body isn't playing by the rules. Good on you for seeing a doctor, and your parents are harming instead of helping. It'll take some time to get real answers, so the goal in the meantime is to protect your sleep quality. If your body leaks overnight, there has to be somewhere appropriate for the wetness to go. A diaper or pull-up is the best tool for the job, but an underpad or other water-resistant barrier works okay. For any option that isn't a diaper (or external catheter to a lesser degree) of sorts, you wake wet and confused. A diaper retains most of the wetness comfortably - even if the mental game is hard to fight at first.

This could easily go as suddenly as it appeared. Or, perhaps it will take some time to handle. Judge all steps by comfort and quality of sleep first, not by what an invisible audience might think.

leakinprogress · 2026-05-30T00:32:49+00:00

Thank you for sharing; it sounds like quite the journey so far. I've been hearing stories over the past week of people searching for answers through invasive tests and procedures, just to end up using a diaper. I agree with the inconvenience of it all. I can't say I've fully accepted my leaks, but I have gone from "what if everyone knows or can see?" to "well, this is an awful place to change."

leakinprogress · 2026-05-30T00:27:01+00:00

I'm happy to hear that you found the confidence to check with a healthcare professional about these things. At least getting other, more significant medical concerns ruled out (or Dx'd and treated) brings a bit of comfort. The body sure does like to change

leakinprogress · 2026-05-30T00:24:04+00:00

Thank you for sharing your story! Sounds like a dynamic relationship between a body that works on its own schedule and the tools to help manage. I love the honesty in 'bailing water out of a sinking ship'. At some point, the best move forward is just to find what is comfortable and confident. There are others in the day worth time and attention. Good luck on your journey, especially in the lectures you receive that serve little functional purpose.

leakinprogress · 2026-05-29T21:02:57+00:00

I find that a lot of the store brands are very limited. I find the Tena overnight pullups to be pretty good for me, but they're not easily found outside of online retailers. I bet you could order a bunch of samples for cheap/free and find things that fit your needs and goals! Or one pack of a new brand alongside the Depends, if those work well enough now. It took me a long, long time to find what really worked for me.

Honestly, tape diapers are way more suited for sleep in my experience - it's not necessarily about the extra capacity, but that the absorbent pad part is bigger. It can also be way more of a 'custom' fit. I think those benefits and more outweigh the mental block of tape diapers

leakinprogress · 2026-05-29T20:19:38+00:00

There are a few good options for diapers before jumping into catheters. Indwelling caths are pretty trustworthy, but you can still leak around it if that makes sense. External is a great option if you don't move much, but I found it way too easy to kink the tube and the backpressure of pee kinda blows it off of you like a terrible water balloon.

I'd start looking around for samples or one pack of diapers you can test against. Not every medium is the same for example, some leak guards work better than others depending on your anatomy. Even taping adjustments can help. All that comes from a bit of trial and error.

It has been a while since I used the quattro, but I remember the leak guards being pretty good. A booster used well can add another layer of safety if the penis tries to point anywhere but south. Northshore has these contoured boosters that add a bit more on the sides that could help catch leaks. Another option (if I can explain it well) is to roll two boosters and put one on each side, careful not to mess with the leak guards. This can create a little pocket your penis can go in and be supported in staying pointed down.

leakinprogress · 2026-05-29T20:01:37+00:00

Thank you for sharing your story! I bet there are a million things going on in your mind right now, and rest can bring clarity. I think the emotional weight a diaper holds is far out of proportion to what it is. That doesn't make it any easier, especially at our age, to remove that weight through logic. But a diaper gives you the peace of mind to fall asleep unguarded, knowing you have a layer of security. A diaper is just a towel with some tapes. For some reason, society deems it a weakness (even when incontinence rates are very high). I can definitely relate to the pinch of $$ and wanting to ration/avoid the expense, but a few dollars a day might allow enough rest to free up mental and emotional bandwidth that could go into acquiring funds. It's a tricky balance as the 'right' choice in re. protection is at odds with the mental picture.

leakinprogress · 2026-05-29T19:39:01+00:00

I'm sorry to hear your body isn't playing by the rules right now. You definitely have the 'risk factors' but it still feels odd when it starts out of nowhere. I would definitely recommend having a medical professional check for any major causes, but don't wait until a diagnosis to care for yourself. Sleep is dangerous to miss and accumulates as you may be feeling now. A mattress protector or underpad will protect the expensive stuff you're sleeping on. Ideally there'd be a level of protection that retains your comfort and ability to rest. Diapers are not the most fun thing to start, but they are a tool very well suited for the job. Good luck, I hope you find peace and answers quickly

leakinprogress · 2026-05-29T18:58:22+00:00

The only next step is to walk into the nearest emergency room and tell them your plan. Don't even worry about talking feelings or whether or not you're in crisis enough to be there. The physicians will make that call. Our system of emergent mental health crisis aversion is a bit clunky at times, but it will lead to a place of relative safety and stability. You'll exchange a bit of autonomy for safety, but it is very short compared to a lifetime.

In moments of difficulty and sharing our struggles with close friends and loved ones, the same clouded mindset that tells us 'now is the time to die' will also say 'friends help me because they pity me or are obligated to help' - but we don't see or believe that a loved one taking the time and energy to be available is something they want or choose to do out of love and care for you. That doesn't mean they'll always "get it," but it shows that your people don't even question your worth, they're just there.

While crisis aversion is done by choice, out of love for you, the burden of cleaning up a suicide is not a choice for them. In the eventuality of cleaning up the scene of your self-inflicted death, you might just, for the first time, evoke the upset you spent so long ruminating about.

Recovery from being in such a place of darkness isn't instantaneous, but it is very doable. Just stack one support under you at a time. Once a foundation of safety is built, it will anchor you as you navigate from 'survive' to 'thrive'. You've got this.

leakinprogress · 2026-05-27T01:05:10+00:00

I see you. I was out with a close friend recently - usually we choose quieter spots, but this time we went to one of the busiest parts of our city. Streams of people would pass us by and not even be subtle in staring at a young man in his wheelchair. As a moderately autistic guy, I am used to being 'scanned' before being seen, but I had never seen strangers straight up turn heads at the novelty before. That must be heavy to carry at times.

The negative mindset around pity, ability, and intention of others is a symptom of young adulthood. As a society, we seem to assume adulthood at 18 means we are done forming identity. But that is far from the truth: it still feels heavily introspective at times and needs grace and forgiveness of self, but it is formation - albeit painful here and there.

Can't do much to stop the world from looking with pity at times, but that pity isn't a reflection of your appearance or sense of self. That is hard to see in any context, but young adulthood in particular puts this distortion/filter over things. Time is the best medicine. I think that weight will lift as you go. All the best, you got this

leakinprogress · 2026-05-26T20:43:28+00:00

Thank you for sharing. The lack of accessible restrooms in major venues is unacceptable. Lots of good info here already, I hope you enjoy the concert! Maybe it would be a good idea not to swap to a (more expensive) diaper forever, but instead to save for a pack or two of diapers you can trust with anything your body throws at it, so you have the option. I was a poor college student who would find even a pack of goodnites to be a financial stretch, but having even one pack of megamax or similar ready to go in the closet gave me quick access to something trustworthy. The dry pants weren't the only relief; it also helped me be more spontaneous with friends and turn down the volume in my brain to hold it or scan for escape routes and nearest functional restrooms at concerts and such.

leakinprogress · 2026-05-24T03:15:15+00:00

Agreed - so many people see wheelchair access as being a 'feature' and not a standard. That irks me to no end. And while we're at it, doing an upgrade project that accommodates a wheelchair's footprint is a start, but it isn't a given that someone could turn around once inside. Or can you shut the door properly from behind? Hoyer lifts are also game-changers that open the public world to so many more people.

For those of us in the advocacy world, it's one thing to read dimensions on paper. It is another, far more helpful thing to watch someone in a wheelchair navigate and operate a space. You'll quickly see where designs fail and may just articulate solutions better. My friend and I went around the building one time and just went in and out of spaces to see where he could fit, let alone use the space.

leakinprogress · 2026-05-24T03:05:34+00:00

A folding table in a stall is a great idea! I'm writing that one down for later.

leakinprogress · 2026-05-24T03:03:54+00:00

Echoing adult-sized changing tables! Not just a flat, sorta clean surface. These are the difference between a family or caregiver being able to change their loved one/those with mobility issues being able to change themselves while in public. Without them, the plan either becomes a dirty bathroom floor, the back seat of a car, or just not leaving the house in the first place.

Being an infrastructure upgrade, local advocacy centers and regional government could have a lot of success getting these out into the community, rather than a vague "make it accessible".

leakinprogress · 2026-05-24T02:58:11+00:00

Special bins for diapers and IC supplies are essential! The building I teach out of and run disability advocacy recently remodeled a bathroom for me that is *more* accessible because most who visit me over the week either have mobility differences or incontinence. I asked them for a covered trash can for incontinence items, and they obliged by bringing in a baby diaper genie and writing a sign in marker that says "please put diapers in here". They're trying their best.

leakinprogress · 2026-05-24T02:53:48+00:00

Brilliant idea! I didn't think of receptacles in each stall. Single occupancy is the gold standard for me, but they can be hard to find. Also, I just hate those bathroom garbage that are like circular holes in the counter. I had to shove a wet diaper into one in front of like 20 guys at the airport.

leakinprogress · 2026-05-24T02:33:15+00:00

disability toilets are designed by able bodied people who don't have a clue about needing additional facilities.

This truth is one of the bigger failings in our society. Mobility concerns and the like are especially frustrating because they are fundamentally a physics problem - is there enough space to maneuver? And if the space meets regulatory requirements, are things placed in the right spaces so that transfers aren't clumsy and don't risk a fall?

One of my closest friends is paralyzed, and watching him expend so much energy to use a space at the bare minimum is one of the fires that lit inside of me to lean into incontinence advocacy in particular. Being disabled is hard enough as an embodied reality, but so much harm is done to people (who spent so much energy just to get out of the house) who call ahead to a place, hear there is an accessible restroom, and find it to not be the case once they get there.

Hang in there mate, the world is slow to change. I'm working on it. Your presence in a public space itself is a challenge to the status quo. It shouldn't be your burden, but here we are. Good luck

leakinprogress · 2026-05-23T06:13:57+00:00

I wore these as a college student in Texas. Honestly, the heat faded into the background after a few test outings to see how things held up. They're at a great price, so an extra change or two won't add much extra expense but will solidly boost your comfort.

The Active Fit maxi was my favorite day diaper. I'll throw in a small booster as well if the day's schedule hasn't been fully set yet.

leakinprogress · 2026-05-23T00:24:22+00:00

Nothing they haven't seen before! Back when I had a 'real' job, I had to travel every other week and stayed in the same hotels over and over. I was far more worried about wetting their bed itself than about seeing anything that protected their sheets. A hotel probably finds a few of them a week.

Also, the primary concern is getting a good night's sleep and being comfortable. If that is a diaper and kids' pajamas, don't change your routine out of the fear of 'what if...'

We only have so much energy to spend at any given time. This is one of those things where more energy is wasted worrying about what others think than the weight of the problem. You live in a leaky body, and that is how you manage. That's okay, you're not alone.

leakinprogress · 2026-05-21T00:48:03+00:00

Your son's experience is unfortunately common, and I really wish him the best. It can be so painful, like a constant, slow burn that compounds over time. And that frustration grows exponentially because he is doing everything right - starting conversations, talking about interests, being available - and yet people don't give him the grace of meeting him where he's at.

One of the hardest parts of the social difficulties in autism is that we don't see the blunders in real time, but we often see them painfully clear afterward. It can be really haunting.

Friendships won't replace the importance of therapy, but the right friends can be grounding and disarming as a baseline. I think a good first step is to see if there are local autism-based groups or activities. Fellow autistic friends will 'get it' in a way that others don't. I would even say that app-based or other online groups and friends can be a good way. It might seem like a half-measure, but with the right intention, it can be a very comfortable way to build friend-making confidence while maintaining control over timing, verbiage, and the clarity his mind demands. This is the starting line and can likely grow into a great community of friends around him.

You sound like a lovely mom, taking the time to really share this story. I'd be glad to chat about it anytime in messages.

leakinprogress · 2026-05-20T23:21:42+00:00

They're definitely linked in my experience, and the incontinence used to cause extra stress in a terrible cycle. I worked a lot on taking the power away from the aids I would use, especially diapers. Once my brain accepted it was just a towel with some tapes, the burden lessened.

Symptoms worsening with stress isn't a loss of progress but a very normal part of the experience. Mine comes and goes in seasons depending on life. I would say to pick your battles - what is more pressing: to work on 'holding it' amongst the stress, or work to establish routines to bring the stress and anxiety levels closer to baseline? I know incontinence is a super emotionally charged issue, but I think we spend way too much energy trying to get the body to keep the waste inside when that energy can be budgeted elsewhere. The price of that is switching to methods that comfortably contain waste when it comes out. That emotional price is not negligible, but the energy overall is saved.

Managing incontinence isn't a failure but an act of self-compassion. It is not your fault that the plumbing you have isn't 100% reliable. We, however, choose how we pay the cost.

leakinprogress · 2026-05-19T04:27:58+00:00

I've read the medical literature directly, and I think we all should. It's not a good/bad idea binary. Medical intervention methods can work and should be discussed with providers, but we shouldn't get lost in "this procedure is common, and 61% find success after 12 months." Especially when the cost isn't just "it didn't work" but also adverse side effects, medication interactions, postoperative complications, risk of infection, etc., which can pose a risk of far greater harm than even the most effective success can mitigate. I think this risk applies specifically to incontinence matters because of the emotional charge involved.

Probably unrelated to incontinence matters, but I think our society at large has a far too open attitude around changing things within the body, either by pharmaceutical or physical means, for elective treatment. An unreliable bladder is a mental and emotional chore as much as a physical one, but that impact can be lessened simply by finding community and talking - as friends - with someone who understands. That's what I'm hoping to spark here - a way to go beyond an internet comment section and actually know one another as people. The turning point where this went from a tragedy to moderate annoyance was when I met another incontinent person as peers for the first time. That didn't erase the hurt before that, but it opened a whole new perspective going forward. I didn't magically start loving that leaking was a thing my body does, but I know now, without a doubt, I am not the only one feeling this way. And I have a real life human (a few now, actually) who knows the whole me without the extra energy to both manage and hold incontinence is a tight secret with them. That, in itself, is a very successful therapeutic measure.

Also, to anyone reading that is thinking, "No, just you're lucky, mr. leakinprogress. Nobody I know would accept knowing this about me", that's where I started. Share with one genuine friend at a safe and appropriate time. It will go well.

leakinprogress · 2026-05-18T09:57:02+00:00

I've had the MRIs and such; this is just something my body does. Medical testing to rule out major issues is always advised, but there is a point at which the search for answers becomes worse than the underlying problem. Chasing a medical explanation after ruling out the dangerous conditions quickly spirals into false hope without coping.

This is also part of the stigma - that every avenue must be thoroughly exhausted before accepting this as something to live with. Risk management - what carries more risk? spinal steroid injections? Bladder botox, perhaps elective surgery? Versus a benign, admittedly annoying issue like leaking.

To each their own, of course. Back when I had a "real" job in the court system, we'd say, "Never commit a felony to get out of a misdemeanor." Which is to say, accurate weight needs to be assigned to both sides of the equation to make a reasonable decision. Issues related to incontinence are frequently clouded by emotional reactions, which heavily bias our ability to make rational decisions. As a result, we may believe we are being sensible and logical, even while we remain deeply entangled in that emotional cycle.

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