Why are some Autistic people not toilet trained?

[dragonwolf]

This is a genuine curiosity I have, as I seek to understand those with more profound levels of Autism.

I often see it when talking with "Autism parents" and it often comes up as a sort of Autism d!ck measuring contest or something, but it's clearly an issue some people struggle with. Trying to find information on why it's an issue requires digging through a bunch of NT-oriented stuff and stuff on how to train one's Autistic child, but information on why it's an issue to begin with seems rather scarce, so I was hoping to get some insight from insiders.

Is it a sensory thing? Is it the result of the communication barrier between many young Autistics and their NT parents? Is it something else? Any information anyone has would be appreciated.

 

[Ylva]

I don't know, but if I have to guess…

Arguments for it being sensory, about hypersensitivity: Toilets are disgusting, who in their right mind would sit down on a chair with a ring for a seat, metal/plastic is cold and smooth and hard and I can sort of see how some – especially children – would rather take a dump in their own trousers than sit on it… also, bathrooms often have fluorescent lights, there's the sound of things and fluids falling into water, maybe the acoustics in the room are uncomfortable enough in general.

Then again, some people are unable to tell when they need to go to the toilet.

Parents tend to not customize their instructions. From what I can tell, they've all read the same books on parenting and seen the same tv doctors and it doesn't occur to them that their huffing and hawing isn't working like they think it should.

 

[Brony714]

Parents tend to not customize their instructions. From what I can tell, they've all read the same books on parenting and seen the same tv doctors and it doesn't occur to them that their huffing and hawing isn't working like they think it should.

Some parents subscribe to the "one size fits all" school of thought when it comes to raising children, they either don't realize or prefer not to accept the fact that what worked for one kid won't work for another. Unfortunately, the "one size fits all" school of thought doesn't take into account things like whether a child is NT or on the autism spectrum.

 

[Warmheart]

For some of us, it's really hard to feel our body's signals, like hunger, thirst, and even the pressure that lets us know when to go potty. The ability to feel these things is called "interoception." Not being able to tell when you need to potty can result in some, uh, drama.

Fragile neurology combined with strong sensory sensitivities leads to shutdowns, such that we don't have a clear grasp of how our day is supposed to go. Did I eat today? Did I pee? Did I drink any water today? We can get that fogged-out.

Executive functioning challenges means the planning, self-monitoring (ability to remain aware enough of what you are doing, as you are doing it) doesn't always happen. So tasks which require a sequence of steps don't always happen. (Ex: Walk to restroom, close door, pull down pants, etc.) In fact, just initiating the confusing sequence when you're shutdown can be so confusing, tasks never happen. Not going to the bathroom, not making a sandwich.. too many steps for an overwhelmed brain in energy-save mode.

For some, the experience might feel like this: Even if the person's potty trained, he/she may go about the day, not able to feel the body's signals. Stress in his/her life overwhelms their neurology, and their awareness becomes minimal at the same time that complex sequential tasks become "too much." Eventually, the person's going to have to "go." He/she may feel distressed and not know why! He/she must then think: "Okay, did I eat today? (maybe I'm hungry) Did I drink today? (am I thirsty?)" and so on. He/she might be in pain and not recognize it. Ultimately, sometimes the only answer to feelings of mysterious distress is to try to eat a little, go potty, drink a little, and take some aspirin. Cover all bases! The challenge is to initiate the sequences (executive dysfunction) to get the drink, go potty, get food, find the aspirin, when deeply brain-fogged. Whew!

What helps?
1. Picture schedules! Yay! Many of us love routines and structure. These are great for when life gets hairy, and boy do they streamline getting the essentials attended to.

You can even put picture schedules in the bathroom...

Sometimes in young kids, it's dyspraxia, a co-ordination and muscle-control development issue. Autistic kids develop at their own speed, and some who may not be potty trained by 3, will be by 13. Or 23! We've got our own timetable. Patience helps. The most important thing is not mindlessly pushing skills, but respectfully listening to the child communicating his/her needs and feelings in whatever way communication is possible. Sensory issues may be the concern, and some of them could possibly be remedied.

Autistic adults can have times when functioning is better than others regarding interoception, awareness, and executive functioning. Ultimately, some of us simply strut our stuff when we're doing things as hoped for, and when there's a bit of drama, we learn to just deal with it, laugh about it, and get on with our life's adventures.

 

[dragonwolf]

For some of us, it's really hard to feel our body's signals, like hunger, thirst, and even the pressure that lets us know when to go potty. The ability to feel these things is called "interoception." Not being able to tell when you need to potty can result in some, uh, drama.

Fragile neurology combined with strong sensory sensitivities leads to shutdowns, such that we don't have a clear grasp of how our day is supposed to go. Did I eat today? Did I pee? Did I drink any water today? We can get that fogged-out.

Executive functioning challenges means the planning, self-monitoring (ability to remain aware enough of what you are doing, as you are doing it) doesn't always happen. So tasks which require a sequence of steps don't always happen. (Ex: Walk to restroom, close door, pull down pants, etc.) In fact, just initiating the confusing sequence when you're shutdown can be so confusing, tasks never happen. Not going to the bathroom, not making a sandwich.. too many steps for an overwhelmed brain in energy-save mode.

For some, the experience might feel like this: Even if the person's potty trained, he/she may go about the day, not able to feel the body's signals. Stress in his/her life overwhelms their neurology, and their awareness becomes minimal at the same time that complex sequential tasks become "too much." Eventually, the person's going to have to "go." He/she may feel distressed and not know why! He/she must then think: "Okay, did I eat today? (maybe I'm hungry) Did I drink today? (am I thirsty?)" and so on. He/she might be in pain and not recognize it. Ultimately, sometimes the only answer to feelings of mysterious distress is to try to eat a little, go potty, drink a little, and take some aspirin. Cover all bases! The challenge is to initiate the sequences (executive dysfunction) to get the drink, go potty, get food, find the aspirin, when deeply brain-fogged. Whew!

What helps?
1. Picture schedules! Yay! Many of us love routines and structure. These are great for when life gets hairy, and boy do they streamline getting the essentials attended to.

View attachment 21873

You can even put picture schedules in the bathroom...

View attachment 21875

Sometimes in young kids, it's dyspraxia, a co-ordination and muscle-control development issue. Autistic kids develop at their own speed, and some who may not be potty trained by 3, will be by 13. Or 23! We've got our own timetable. Patience helps. The most important thing is not mindlessly pushing skills, but respectfully listening to the child communicating his/her needs and feelings in whatever way communication is possible. Sensory issues may be the concern, and some of them could possibly be remedied.

Autistic adults can have times when functioning is better than others regarding interoception, awareness, and executive functioning. Ultimately, some of us simply strut our stuff when we're doing things as hoped for, and when there's a bit of drama, we learn to just deal with it, laugh about it, and get on with our life's adventures.

View attachment 21877

Thank you for all of this, this is fantastic!

 

[Mr Allen]

I have to be toilet trained when I'm out and about, here in Sheffield there's almost no public toilets in the City, because apart from big Department Stores most shops don't like you using their Loo unless you're a paying customer.

 

[Jute]

Some profoundly autistic people simply "inhabit their own private world" and are totally unaware of such trivialities as toilets, bathing, dressing and the rest of what society considers to be normal and required.

 

[toothless]

i am not 'toilet trained' as its a concept i will never understand, and i also have no ability to process the feelings from my bladder and bowel.
i have moderate classic autism and live exactly like how jute describes profoundly autistic people,i am prescribed nappies on the NHS.

i used to have PECS schedules on the wall to tell me how to access then use the toilet-it goes through each step in symbols but it went missing when i moved into my own apartment,i need to have another one made as i do have a lot of issues with it.

ive lived with a lot of autistics like myself and they dont understand the feelings from their bladder or bowel to-i think its a common issue not just about lacking toileting training.

 

[Jute]

That's rather harsh. Any reason?

Yes, because it's truly how some profound autistics are. It's not a criticism, it's just an objective observation. The use of the word "harsh" is a subjective opinion.

 

[Jute]

Well, the claim that autistics "inhabit their own private world" to a higher degree than anyone else is pretty clichéd, and the very word "normal" is considered a glowing endorsement.

Did you seriously just criticize me for having an opinion?

The reason that the phrase "inhabits their own private world" is clichéd is because it's overused and why do you think that is? Probably because in some cases it is actually true. I did not say that ALL autistics inhabit their own private world, I did not say that autistics do it to a higher degree than anyone else. The actual phrase that I used was that "some profoundly autistic people" do and that is perfectly true. Are you saying that it isn't, that no autistic people, "inhabit their own private world"?

You are reading things into what I wrote that simply aren't there. You implied criticism of my post by your use of the word "harsh." My response was that..."The use of the word harsh is a subjective opinion." How is that criticism? It was simply observing a fact.

 

[Jute]

What is your problem? Why are you repeatedly attacking me for supposedly saying things that I never said? The OP asked "Why are some autistic people not toilet trained?" I simply posted one possible reason.

You suddenly claim "So it's massively unfair for you to alienate some autistics even as you blame the idea that it's because they can't process things you can."

How do you know that I can process things that they can't? You're making yet another wrong assumption. How do I know that some autistic people crap themselves because they inhabit their own private world? BECAUSE I WAS ONE OF THEM. Now get off my case.

 

[Mr Allen]

I hate when people say Autistic people aren't "normal"!! Define "normal"?! Neuro Typical?

Sorry but it's something I find particularly offensive.

 

[lovemymonsters]

I suspect the reasons some people with autism have issues with bowel and or bladder control are related to a variety of potential wiring problems - delayed processing, confusion about what the feelings are, difficulty with executive function etc. Too many possibilities to generalize! I work with a student who does toilet himself properly, but often requires prompting because he gets so caught up in whatever he is doing that he wets himself rather than transition. Another student gets so worked up over the idea of going into the bathroom that it has been a real challenge to get him using the facilities at all, and he is in grade 7 now! He got so used to wetting in a pull-up that changing the behaviour was the struggle, not the toilet training.

 

[rainfall]

For my son he wasn't potty trained until right before his eighth birthday, which was recently. I had tried all the tactics that I was given and some I came up with on my own tailored to suit him. Nothing worked at all. The only thing I kept up was telling him that he needed to use the toilet and being disappointed but not angry when he did not do it. He had the executive functioning but did not want to advance to the next level because it was more work for him, which I understand.

One day about six-seven months ago he randomly started to urinate on his own. Just recently he decided to complete his potty training on his own as well. It was all in his time. Within a week of each he had it down pat. No accidents even when we went out somewhere. He knew he needed to go to a restroom. (Also, I'm not an NT, but it doesn't mean that it's any easier to understand or parent as we have different styles and ways of doing things that can often clash like any other parent/child relationship.)

Everyone is uniquely different regardless of if they are on the spectrum or not. Since there are so many factors that could contribute to this issue and each person is a unique individual, I think it would be hard to get a solid set of facts on why it's an issue for so many. Still, I think Warmheart gave the best bit of information for an overall type explanation.

 

[Mary Anne]

For some of us, it's really hard to feel our body's signals, like hunger, thirst, and even the pressure that lets us know when to go potty. The ability to feel these things is called "interoception." Not being able to tell when you need to potty can result in some, uh, drama.

Fragile neurology combined with strong sensory sensitivities leads to shutdowns, such that we don't have a clear grasp of how our day is supposed to go. Did I eat today? Did I pee? Did I drink any water today? We can get that fogged-out.

Executive functioning challenges means the planning, self-monitoring (ability to remain aware enough of what you are doing, as you are doing it) doesn't always happen. So tasks which require a sequence of steps don't always happen. (Ex: Walk to restroom, close door, pull down pants, etc.) In fact, just initiating the confusing sequence when you're shutdown can be so confusing, tasks never happen. Not going to the bathroom, not making a sandwich.. too many steps for an overwhelmed brain in energy-save mode.

For some, the experience might feel like this: Even if the person's potty trained, he/she may go about the day, not able to feel the body's signals. Stress in his/her life overwhelms their neurology, and their awareness becomes minimal at the same time that complex sequential tasks become "too much." Eventually, the person's going to have to "go." He/she may feel distressed and not know why! He/she must then think: "Okay, did I eat today? (maybe I'm hungry) Did I drink today? (am I thirsty?)" and so on. He/she might be in pain and not recognize it. Ultimately, sometimes the only answer to feelings of mysterious distress is to try to eat a little, go potty, drink a little, and take some aspirin. Cover all bases! The challenge is to initiate the sequences (executive dysfunction) to get the drink, go potty, get food, find the aspirin, when deeply brain-fogged. Whew!

What helps?
1. Picture schedules! Yay! Many of us love routines and structure. These are great for when life gets hairy, and boy do they streamline getting the essentials attended to.

View attachment 21873

You can even put picture schedules in the bathroom...

View attachment 21875

Sometimes in young kids, it's dyspraxia, a co-ordination and muscle-control development issue. Autistic kids develop at their own speed, and some who may not be potty trained by 3, will be by 13. Or 23! We've got our own timetable. Patience helps. The most important thing is not mindlessly pushing skills, but respectfully listening to the child communicating his/her needs and feelings in whatever way communication is possible. Sensory issues may be the concern, and some of them could possibly be remedied.

Autistic adults can have times when functioning is better than others regarding interoception, awareness, and executive functioning. Ultimately, some of us simply strut our stuff when we're doing things as hoped for, and when there's a bit of drama, we learn to just deal with it, laugh about it, and get on with our life's adventures.

View attachment 21877

Thank you so much for your post. Although I have never had “this” problem, I have had great problems with sequencing in many other ways through out life. I often have to draw out steps of actions, just like these pictures! I lost a really good job once due to sequencing issues. Everything needs drawings or written out steps. I never knew about all this. Wow!