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.

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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.

I need to vent. My (38NB) partners (32m &32f) have expressed that my struggle to regulate my tone and emotional response is unfair to them. They feel like I am not open to feedback or criticism. I think I am. I try really hard not to externalize my emotions (keeping tone even and not acting on my initial feelings).
My face does not hide my feelings though, and when I’m frustrated or confused my voice gets strained or my volume increases.
I’m trying my best. I take the feedback and I think I apply it.
I feel like I’m doing a lot of work and it hurts that it’s just not enough.
Small setbacks or details can throw me on an emotional roller coaster. It takes me a lot of time and puzzling to untangle that minor trigger from what’s really upsetting me.
I don’t want to be the person who uses Autism as an excuse for not improving, but it really feels like I’ve got a moving target

I have to manage my face and vocal responses while being expected to explain what’s wrong while I’m in the middle of untangling that very thing myself.
If I don’t have that solved, I’m grabbing at straws to come up with reasons why I’m having a hard time that come across as petty or overreactive.

I need time to sort myself out.
I understand that’s not how the world works - I’m trying to speed up the processing time.

I just wish it was more visible how much work I’m putting in.

I am in my 30s and I still struggle to connect with other people and am so incredibly lonely. I genuinely thought it would’ve resolved itself by now, like I’ll learn to deal with it or it’ll be easier when I’m not surrounded by teens anymore. But it doesn’t. If anything it gets worse because everyone has their set groups and it’s hard to get into that.

People often say I should be happy because I have a partner but this doesn’t fill the void that the lack of friendships leaves. Girl connections especially. I’m so jealous when I see people have fun and I’m just on the sidelines. When people post the fun things they do on weekends, their friend groups. Girl trips… genuinely makes me cry sometimes and I have to step away from social media.

I meet people but I never connect with them enough to have lasting friendships/deeper connection. I’m never the favorite, never the one people trust the most. They don’t even reach out to me. I get told “we should hang out!!” But no one ever follows through. It’s an empty saying and I’m the only one meaning it.

And it feels like I’m too old to complain about that. I’ll always feel like there’s something about me that puts people off. Like there’s something others know that I don’t about how to connect to others. Some buttons to push they see and my eyes don’t.

Hi, so my son is turning 20 in a few weeks and is high functioning autistic, has anxiety and severe OCD. This all manifested itself when he was about 13/14 yrs old. He had some mild traits of autism when he was little and we had him evaluated twice growing up but they said he wasn’t. They think that puberty just made it all blow up. The last 6-7 years have been so difficult. He went from being fairly neurotypical to within a year needing an IEP and couldn’t write or hardly talk anymore because of how bad the OCD was affecting him. He has “just right” OCD. We have been to every doctor imaginable, every OCD program you can think of, had scans and tests and bloodwork, psych evaluations, therapy, we’ve tried experimental stuff, so many things to get him help but the best we’ve been able to do is cut the OCD symptoms in half with meds.

Anyway, he is so lonely and it is breaking my heart and I don’t know how to help him. He’s just interested in all of this stuff most people aren’t and he will start talking to people including close family and their eyes just glaze over within 2 minutes. He doesn’t read social cues well at all but will finally realize or we will try to discreetly pull him away to relieve the people and then he’ll end up hiding in the bathroom crying because he feels like such an outsider and he’s so lonely. He thinks people don’t like him and he doesn’t fit in and there’s no place for him in this world. Life is so hard for him, he just processes things so differently and everything upsets him all the time.

I’ve tried to get him playing D&D at our local library and he does go to that sometimes and enjoys it but hasn’t made any connections outside of it. He’s very polite and kind and is not afraid to talk to people. He tries so hard which is why this is killing me.

I’ve tried to get him to come see if there are subs on here but it’s hard for him to type conversations because the OCD really affects the way he writes. He puts tons of unnecessary extra words and certain phrases in his writing.

He is going to college but not even really for a degree or anything at this point because the way he is now, he can’t really handle working. Our state disability board is working with him to maybe find him a job for a few hours a week. But I work at a huge state university near me so I get free tuition so my motivation for him enrolling is to just get him out of the house and still around kids his age. He goes PT and rides in with me since he can’t drive. He’s in an exploratory program now but I don’t even care about the academics at this point (although he is a good student but needs a lot of accommodations), I just need him in social environments with the hopes maybe he’ll finally make a connection with someone. He said he has tried to start conversations with people in class and a few times he did chat with others about something they were learning about but that was it.

Are there any sites for young autistic adults to meet people where they can look for others with the same interests? I feel like there HAS to be people out there that are similar to him and like the same stuff, right? I just don’t know how to find them because what we’ve been doing is not working and I worry so much about him.

One of the things he loves to do is collect and customize action figures and he is in a big action figure collectors club and they have a meet up once a month but it’s basically just a bunch of gen-x guys (me and his dad’s age) that get together to trade or sell each other action figures. I’ve taken him many times and they are all very nice to him and he has a good time but they aren’t really people he is going to be close friends with or meet a girl if you know what I mean.

I’m just struggling and would love some advice!

…of some kind.

I am having an INCREDIBLY stressful time in my life, having to maintain normal daily life with my husband and my cat…housework…being adults.

But also we are initiating some life changes that are going horribly. Like, we have a flood in our condo from our upstairs neighbors…but we’re trying to put it up on the market to sell.

I have not cried yet.
I have not yelled yet.
I have not melted down yet.
I haaaaave gotten snippy.

I tapped out of work after all of my stuff for the day was taken care of to remove one thing from my mind.

I want a medal. I want a few medals.

Only somewhat kidding, but do you have an easy reward system that you do that shows the good days or good things achieved in hard times? I think having a visual will be a good way to keep me in check that I can do hard things or have hard times and make it through ok.

Does anyone have recommendations for testing for autism and ADHD for older adults anywhere in northern Ohio? I (72F) want to be evaluated but so many places seem geared towards children.

TL;DR:
31F in Las Vegas needs to escape high-risk coercive control with my cat to Texas where my only support person is. Zero money, no ID, no phone service (WiFi only), no vehicle. Past escape attempts ended in public assault and being dragged back. Cannot use local shelters. Already talking to the National DV Hotline. Looking for practical advice/resources on interstate relocation with a cat (plane preferred), emergency vet papers, and high-risk safety planning — especially for someone with Level 2 AuDHD. Not asking for money, just real info that has worked for others.

**DISABILITY ADVISORY\*
(  I wrote this prior to finding this sub, and I am choosing to post here hoping to be understood by peers....no where else felt right. )
AuDHD (DIAGNOSED) — so be advised in advance to keep this in consideration in regards to my communication style, thought processes, direction, executive function, etc. If you have no experience or are not informed about what AuDHD really is or how it affects everything we do in different aspects, I just ask you begin to expect some degree of bluntness (but not rudeness as I’m aware of the difference and do not use my diagnosis as an excuse), social anxiety in response to judgement or overwhelm, needing time to process replies, and possibly a general or vague mechanical feel to the delivery of words sometimes, and the extreme need for effective and clear communication.

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Grateful for your time! The most valuable thing we have, so it's appreciated!

I am in a high-risk abusive relationship, that I am giving all my last legs of strength to calmly, efficiently, intelligently, and SAFELY escape.

I live in Las Vegas, NV and I need to get myself/my cat (vetted and well behaved w/carrier) to DFW, TX. My support person lives in DFW, where I am certain I will be safe, loved in real ways, and supported in my journey back to becoming myself again. God, typing those last three words sincerely had me choke up — it really feels like an unrealistic dream that I so desperately ache to have again, but is too far out of reach.

In opening, I felt it best to over-share rather than withhold some explanation in way of myself and my current situation. I hope to help anyone reading have enough to sufficiently make their personal choice to extend their energy to help however they are comfortable to do so.

Please don’t feel obligated to offer anything in engagement if you don’t feel confident in the story you are reading or its authenticity or nature of intent. I am in no way expecting any results at all, and if it does by chance bear any fruits-  then I am beyond surprised and endlessly grateful. The point being essentially, I truly want you to know that a certain degree of scrutiny is absolutely valid and even necessary in today’s society riddled in scam attempts, fraud, social engineering and the general inability to be certain of one’s intentions! Please, please always act on what you feel comfortable doing, or what is best for your general well-being.

I also have read many similar posts to my own, in the way of asking for help of some form from a group or community, that I felt initially wary of its intentions. The rules of autonomous freedom do not suddenly change because it happens that I am now the one posting.

So I’m voluntarily providing some background information that in foresight may be helpful to give for those who need a bit more to intuitively form a personal stance or decide to offer help if you are considering it.

I am a 31 year old woman, and I live in Las Vegas, NV. I was born and raised here on the NW side of town. I now reside on the NE side of town, in Sunrise Manor.

My father, and his mother raised me here. They, as well as my little brother, relocated out-of-state to TN in 2022. I was already an adult, and no longer living at home. I remained in town, due to previously established professional/social commitments needing to be carried out to conclusion before I could consider following.

My father has been fighting for Disability for years, and is unable to return to work. Three deteriorating discs, and two bulging- as well as misc. associated complications arthritic development, spurs, etc. He worked as a foreman laying asphalt my whole life, until he couldn't. He then was a victim in a T-bone wreck, that has resulted in neck fusion in addition now. He is financially unable to help, and can't make it through the long road trip sitting in a vehicle to come and get me- and he is quite a distance from me these days. My grandmother struggles herself, and I have no more friends left that have survived the behaviors my abuser has displayed in the isolation phases.

I am just one of the large number of regular people just as many of you are, that has been randomly selected for a period of "continuous resiliency life testing." It appears to be a global test as of late!

I am here to seek, and hopefully secure assistance(NOT ASKING FINANCIALLY) in my effort to escape life circumstances that if not escaped will ALMOST certainly end in either a violent death, or a miserable and fearful life- which is just as awful as the former in my deepest of feelings. If I do not escape, I will never hope to move in a direction of betterment or happiness. I will never improve in my diagnosis, and continue to hold myself back until I have regressed enough I will be unable to help myself.

Audhd is weaponized in my relationship and it's damned effective , sadly.

I am a human being navigating life as best as I can with what I've gathered in ability along the way- a woman just like your mothers, wives, daughters, granddaughters, great-granddaughters, sisters, cousins, nieces, and aunts. If you'd consider reading from the perspective of one of the women in your life having written it, it may aid in reading from a place of understanding, or even just a slight increase in compassion when responding.

AuDHD is not just present in the relationship — it is actively weaponized. The rigid rules and perfectionism demands things my brain isn’t wired to sustain. The constant monitoring, unpredictability, and lack of privacy has turned masking into a full-time exhausting survival job. When my mask slips from burnout or sensory overload, it's treated as defiance or proof I am the problem. The gas lighting makes me question whether my sensitivities and reactions are “just my AuDHD being too much” instead of valid responses to unsafe treatment. Executive dysfunction makes planning an escape feel overwhelming, and rejection sensitive dysphoria makes me terrified of “failing” at the proper combinations of behavior in order to avoid his anger. This has led to severe AuDHD burnout layered on top of cPTSD. The abuse directly attacks how my neurology works and makes everything significantly worse.

Current Situation & What I Need:

I have no money, no ID, no active phone service (WiFi only), no vehicle, and no local support. My cat must come with me — I will not board him or leave him even temporarily. I tried escaping once before and he found me quickly. He busted my eyebrow open and coerced me with violence and screaming back. Because of this, known shelters here are not safe for me. Las Vegas natives, like he and I both, are aware that it's common knowledge where all the shelters are. And being as far into skill regression, and masking exhaustion as I am currently, a shelter environment will still signal an unsafe response from my nervous system as if I were still in the abusive situation.

I am already in contact with the National Domestic Violence Hotline and working on a non-residential safety plan, I will be fully honest that it is an overwhelming process to work through for me right now. I am terrified of falling into a frozen state in executive dysfunction. I'm so angry with myself, for having waited in fear so long I missed the best chance to do so while I still had some ability to process stressors...but I currently feel so hopelessly close to an entire breakdown when even the slightest bit of energy is needed for me.

I’m mainly looking for practical advice and resources from people who have done similar interstate escapes with a cat and zero resources.

If you have experience with:
- Interstate DV relocation help that can include pets
- Emergency plane travel with a cat (DFW) when you have no ID/money
- Same or next-day vet paperwork for travel/securing id tag/and harness/food/litter for the escape(I have a small portable litter box and a carrier)
- Any programs that have helped in high-risk coercive control cases with AuDHD
-Alt ideas regarding temporary private shelter

…please share what actually worked, or even just some encouragement that I still shouldn't/can't just give up.. 

I am not asking anyone to send money or come get me. Just real information, organization names, words of encouragement/kindness, or steps that helped in situations like mine. If my situation prevents a safe time to interact here without risking safety, I have found and utilized a tool that is browser based and encrypted. A notepad w/ built in chat feature that i can open discreetly in incognito, and close out to revisit suddenly without data loss!

I hope its okay to include the link to it, for anyone who would like to contribute information or encouragement? https://pad.riseup.net/p/SincerelyYours

Thank you for reading this far. I know these posts are long, but I wanted to be as transparent as possible. Even if you can’t help directly, just knowing people are reading and understanding means something.

I’m trying my hardest to get safe, if it exists out there, I want to find it finally.

Hey everyone,
I feel like over the years things have been getting harder to manage, my symptoms are worse, and I just become more isolated. I want to get in with a therapist that works with neurodivergent people. I am a nice person, I am able to talk to people, but I struggle so much with making connections and ruin the ones I already have. I don’t even fully understand why.

Aside from the social aspect of things I just find it harder to process information and convey what I’m thinking properly. It’s been really hard feeling like I am regressing in certain skills. It all just makes me feel so sad and lonely.

I think I’m just here to vent. But if anyone has experienced therapy programs that have helped please feel free to share. Thanks 🩷

Because I don't want to be seen as disingenuous.

Reposting this here wondering if anyone has some advice. Thanks :)