Aspies For Freedom

I've had no luck searching through the archives on this subject (please point me to the appropriate thread if there is one that exists).

Our son is 6.75yo. He did so well with the no.1's as a toddler - mastered it quite early in fact, but we faced major challenges with the no.2's. Undoubtedly testing our patience, we did our utmost best and quit stressing over it a few years ago. Took a deep breath, did out best to accept it and let our son find his way through it at his own pace. Put up with needing to face washing heavily soiled underpants (as nappies did have to finally make their departure out of the scene). Tolerated it with a great deal of patience on most days, but surely - did have our moments of,

"Eeeek - will this journey ever end?! Will our son ever be able to learn how to master this on his own?"

He's almost there, and we're really thrilled with his progress. On most days, we can hear him holler out;

"Mum! Dad! I did a poo in the toilet on time!" (yay, well done!). He does his best to give his own bum a wipe (yay, well done!), but still wants our help with using baby-wipes to give it a "polish"(to make it clean).

We haven't pushed him to do the last "polish" on his own. I recently asked him if he might be ready to try wiping things up on his own, but the look on his face was ample enough for me to know he's not ready and to back right off.

For now - i guess we're quite ok to go at the pace that we have for the last few years. In my heart, i can see/feel/sense/know that my son will find his way. He's made so much progress and it does feel like one of those things that will come around with time. I have undoutebdly faced judgements from people yelling and attacking us with the "it's all your fault parent!TM" in the past but i guess i'm over that phase of "new parenting" coz i know i do my utmost best-that-i-can. I know i'm a good mum now and i know i'll never be able to do a good-enough job on my own either because i knew my son needed the assistance of a small village to help my kid the first moment i held him. To then face attack from people who barely know me thinking that my beliefs on the "small village" is idealistic shit, but it kind of doesn't matter anyway because i did end up building that village for my family and continue to do so anyway. My family has access to a lot of fantastic support these days.

I'd appreciate any suggestions from other autistic adults who can share the sorts of things that helped them (or didn't help them) along this journey of learning how to master things on your own in the toilet department.

With that, i don't mean to overtly exclude the advice from other parents or even NT folks whom have gone through similar. I welcome them because i also facilitate an online support group for mums, and i'm a great advocate for learning from other people's real experiences as opposed to some stupid baby-book-manual written by one "expert" who really doesn't have a f'king clue when it comes to certain issues. (Hey, there's only so much that a single person can be so knowledgeable about on any given subject)

I'm after the insights to understand the kinds of things and issues that my son could've gone through. I think i actually know many of them but i'm keen to learn from others for further insight.

Any insights or memories from early childhood as to why something pooping can be such a pain in the ass? (or even with something like bed-wetting) Was it a literal pain in the ass? Any relief by paraffin/diet changes? Did you find things like sticker charts/rewards highly patronising or useful? Is a parent who gets angry (trauma) just as bad as a parent who exercises too much patience(not-enough-push)? Was it because it was hard to know/feel that a bowel movement was arriving? Am i wrong to assume things in the past-tense and could there be autistic adults who still struggle quite considerably when it comes to pooping? If so, what strategies do you use to cope & manage it as an adult? Do you have trouble pooping in a toilet that isn’t located your own home? (I know of a few mums who have this problem!)

What sorts of sensory-overload things could’ve (or still) upset you so much about the bathroom environment? Texture of the toilet paper? The sound of the flush? Coldness of the tiles? Not feeling your feet on the fall and scared of falling in? The sound of the exhaust fans? The concept of water disappearing into a hole or a drain? Any specific trauma or extraordinary event attached to bathrooms which made them scary? How could the bathroom environment be better designed to help make it more comfortable? Tighter/enclosed spaces vs more open-plan style ones? What sorts of things helped you on your path to finally master all the steps when it comes to taking care of yourself in the toilet department all on your own? What helped? What didn’t help?

Any adults out there who still require the assistance of their parents to wipe their own bottoms?  

Anywayz - open to stories, feedback, insights & suggestions.

Thanks.

Hello, there! I am an adult autistic person, and I still needed help to wipe my bottom up to age 9 or 10, though by that age I mostly could get to the toilet on time. Something that's important is to try not to show what a pain it is when he doesn't make it to the toilet on time, or if some of your frustration with the situation starts showing, it'd probably be a good idea to tell him something along the lines of, "It's okay, I know you try." That kind of thing helped me a lot when I was a kid and my parents got exasperated.

One reason why it can be hard to make it on time is that for some of us, body awareness is a major issue, and it's hard to tell when your body is giving you the signals that you need to go. Another reason can be that from the time you get the thought that you need to go, there can be a significant gap between then and when you actually get up and go. I have that problem with many kinds of tasks, not just bathroom ones (though luckily I usually make it in time).

When I was little and it was at night, it would take me a lot more time to initiate getting up and going to the bathroom, because the switch from the dark bedroom to the bright bathroom, and the cold tiles, would make it painful, and this in addition to the issue of taking a longer time to initiate things. If that's the case, it would probably help to have a dimmer light in his room to adjust to the brighter light, and one of those bathroom rugs so that you don't have to walk on the cold tile.

I don't remember there being sticker charts used for toilet training, but I remember when me and my siblings had trouble fighting each other a lot, that my dad made a sticker chart and you don't get a sticker if you get in a fight (physically or by yelling or insulting) or something like that. I think it was most effective for me than anyone, because I loved those shiny star stickers! I would run my fingers over them, and pick out which color I wanted that day. It worked similarly in kindergarten, where if you followed the rules you got a green card, and green was one of my favorite colors (I also liked red and blue, but I knew that it'd be bad if I got too many red cards, like my older sister got a lot before I started going to school). I think sticker charts, when done well, can be a great motivator for kids, especially autistic kids who have certain sensory preferences.

I had a bit of trouble with the transition to using the potty to using the toilet but that was because the toilet seemed so big. These days, there wouldn't have been such an issue because of those little steps and special seats you can put over the toilet.

It would drive me spare to have a kid who still pooped themselves a lot after they were three or four but that is probably the aspie rigidity of thought coming through.

I got a phobia of having diarrhoea when I was in first grade because of getting food poisoning at a party and then having teachers who yelled at kids who asked to go to the toilet and because I got nervous diarrhoea when we had a teacher who used to scream and yell for no apparent reason.

I found out later that the teacher had returned to work six weeks after giving birth and must have been suffering post-natal depression. Finally, the nuns convinced her to take more time off. I think it is ridiculous that somebody would have to go back to work so soon but unfortunately, finances are often tight.

So one day, I had a bit of an accident and for months after, some boys used to tease me and I got a real complex and worried incessantly if I had the smallest tummy ache in case it meant getting the runs. I'm still not really happy about the idea now but wouldn't say it is a phobia any more. Mum and dad got me to several doctors with mystery tummy aches but it turned out to be stress-related.

Overall, I don't think I had too many troubles apart from that. Using the toilets at little school was a pain because big girls used to hog the toilets and spend ages pooping and then the little kids wouldn't even get to go to the toilet before they had to go back to class.

I think it's vital in pre-school and school that the kids know where the toilets are and that if they ask to go to the toilet, they are let go without being made to feel guilty or that they are being an inconvenience. Some kids might use it as an opportunity to get out of class and fool around but they would be the minority and it's far better to treat all requests as genuine.

Kids often have accidents because they get engrossed in what they are doing. It can be a matter of being very firm if they start passing wind because that probably means they have to do a number 2. If they are worried that somebody will disturb their game, make sure that nobody does.

I could wipe my own bum when I was about 3 or so and got rather a shock when one of my classmate's sisters still needed her mum to wipe her bum when she was 7. Now I realise it isn't so rare.

My 9-year-old still has 'instances.'  It really is baffling that a child could have control over peeing, but still on occasion soil himself when there is no diarrhea. I mean, he has to literally push to get it out, how could he not know? Usually it occurs when he is deeply engaged in an activity. It happened yesterday and he is restricted from electronics until tomorrow. Yes, it usually occurs when he is deeply engaged in an electronic activity. He has no sensory issues with the bathroom or toilet, he simply gets so involved in something that it doesn't occur to him to get up and go. He cannot tell me what's going on, he simply says that he doesn't know.  We've gone months without incident, and then had several soilings all in a week. And each time we have months without incident I hope that's the end of it.  I have faith that this will stop altogether one day.  Hopefully soon.  Yesterday was a let down.

So, I guess, no advice.  WE aren't there yet.

My husband had a really difficult time with this when he was young.  He would lose himself in whatever he was doing and would just not go and then would realize he had waited too long when it was too late.  He told me a story about how he used to hide the undies and when his family moved when he was older, they pulled out a dresser and found them.  He got no support at all and was beaten severely (very abusive home) when this happened, and yet she would lock them out during the day.  Duh.

So, the only advice I would say would be the same that the other peeps have said.  When he is engaged in an activity and seems to not be exactly "there" in mind and body, a reminder might come in handy.

I am not sure if my daughter is NT or not, but she had a period of time where she would ignore the need to go and have accidents.  She got over it very quickly with the information that if she did not stop and go to the bathroom she would be called "the poopy girl" or some variation for her elementary school life.  I am not sure that would work with all kids.  We do tend to remind her occasionally at home when she is passing gas like mad and yet will not get up and go to the bathroom.  

I hope some others have more information for you.  

I know some people say it is bad to call kids "smelly" if they have an accident before they start school but kids are very cruel to those who poop their pants. It's kinder to impress on them how important an issue it is to go to the toilet when they need to before they are in a situation with other kids who will torment them.

If they are passing gas, you might need to say "Go to the toilet, NOW!". If they say they don't need to go you could say "I think you do because otherwise you wouldn't be farting like that!".

Unfortunately, school toilets are not always user-friendly, leading children to "hang on" until they get home and then maybe not making it. One way around it is for them to establish a routine of going to the toilet at a particular time each day when they are at home so they are less likely to need to go at school. Another issue is there might not be enough toilets to go around.

I'm also not very much in favour of the idea of having "doorless toilets" at school as some kids need privacy, and especially those on the autistic spectrum. I also wonder how common it is for kids to be too embarassed to go behind a tree or in a cave when they are on a school camp?

I went on a school camp when I was 15 and was too embarrassed to do anything but number 1's until on the 3rd or 4th day our group met up with another group who had porta potties. There were long lines of people waiting to use the porta-potties from our group so obviously others felt the same way.

It seemed to be more of an issue with the girls.

Thanks to all for the feedback. It's been hard to reply without kicking into a novel-lengthed response.

Yeah - i think this is one of the core issues at hand as it affects other things at this end as well. It makes me wonder how successful i will be able in sourcing other people's experiences on this front by doing a search for,

"I don't know" or "s/he doesn't know" - as i think this is what we're dealing with each time i hear my son answer like this too.

Anywayz - i'm feeling self-conscious about posting my lengthy response atm, granted that i'm probably in the company of others who also have a tendancy for high word-counts with their posts. Hope it's ok to respond in small pieces at a time and thanks again.

My son will be five in June and he has gone the other way, he was able to 'wee' in the toilet but a number two is very different. For some strange reason he has 'regressed' he will not now be without his nappie. I am told that this can happen as in the whole issue becoming an anxiety. It is difficult with toileting and according to alot of organisations out there it is very common and in some cases the age of 8 to 9 can be when i am looking at my son being comfortable with using the toilet. I will not force the issue as you say in their own time.

I can tell you about an autistic/aspie relative who potty trained himself when he felt like it.  He saw his younger brother and then his youngest sister do it, so he did it - all by himself - by age 41/2. (ounds about righ I guess excpet until THAT day he showed NO interest- which was Okay cuz he didn't have to go to school sono hurry)  How does this relate? Well it is not unusual for him to be in the bathroom - by himself - his scheduled time seems to be in the everning around 7PM- good thing the house has 3 bathrooms- he is in there by himself for over an hour- sometimes an hour and a half.  He is a pre-teen now) I am told that he wants to make sure everything is out - and since he is squeemish about getting his hands even remotely possibly to touch anything - he is ever so careful - he takes care of it all himself.  He is very fastiduous - as long as he is left alone - with time.  I think in your case you may have to wait till he (possibly naturally) wants privacy and no help in that area.  It will happen.  Like you said it takes patience.  and almost a half a roll of TP per event! LOL  -- When he was younger he was given one of those wipes to use - he didn't feel comfortable that the TP wouldn't rip.  For ecological reasons and for other reasons when he got older the wipes were no longer handed thru the door at the end when he asked for one.  Hope this post has some relavance for you.