Struggling with diaper changes and odd new behaviour

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Hi All,

I'm a single mom to a 5.5-year-old boy who has autism. Although he’s very high-functioning, he’s still not potty trained and wears diapers full time. I’ve tried potty training him on and off, but he’s never shown any interest or signs that he’s ready. He doesn’t seem to notice when he pees or poops, and he doesn’t mind when there’s something in his diaper. He doesn’t go off to hide like many kids do, he’ll just stop right where he is and poop, whether he’s playing, watching TV, or even while we’re eating. It’s like he’s completely unaware of what’s happening in his body.

I’ve brought this up several times with his doctor, but I’m usually told that he either doesn’t receive or doesn’t understand the signals from his body, and that all I can do is wait. Honestly, it’s getting really frustrating.

The biggest struggle lately, or really, over the past year, has been how incredibly hard it’s become to change his diaper. Especially when he’s pooped, which of course I want to deal with right away. If it were up to him, he could walk around in a poopy diaper all day without a care. It’s especially difficult when he’s in the middle of something he enjoys, like playing or watching TV. He just can’t handle being interrupted, he’ll completely lose it, screaming, kicking, telling me to leave him alone, and often trying to push me out of the room.

At the same time, it usually goes a little more smoothly when it’s part of a predictable routine, like in the morning, before we go out, or before meals. Then he knows what to expect, even if it’s not completely easy.
About a year ago, he went through a short phase where he started smearing his poop. That was incredibly tough to deal with, but thankfully it only happened a few times. Lately, though, he’s developed a new behaviour after pooping that I really don’t know how to interpret. I’ve seen him sitting and kind of "bouncing" on his bottom (hard to describe), and he laughs like he thinks it’s hilarious. At first, I thought he was doing it just to get a reaction out of me, but then I noticed he does it even when he’s alone. Every time I see it, I go in and ask what he’s doing and tell him, “We don’t do that”, and then he totally loses it. Screaming, kicking, hitting.

I honestly don’t know how to handle this. Has anyone seen anything like this before? How do you respond to behaviours like that?

And I don’t know how to get him to stop what he’s doing when it’s time for a diaper change, without it turning into a major meltdown. Right now, it feels like each attempt just makes things worse. I’d really appreciate any advice or thoughts.

Part of human development is learning how to avoid negative consequences. Some people here freak out if anyone mentions spanking. We found that if you use a wooden paint stirrer (low mass), a few swats on the back of the hand can be an incentive. We would also offer a time out of five minutes on a chair, but they would always select the swats (I suppose because it was over quickly).

He will need to develop the skills to set aside something he is interested in to deal with all sorts of interruptions. This is just the first step in squiring the skills to manage his own focus.

Just to be clear, I don't know how your kid really feels, just giving my own interpretation.

He might like the feeling of poop. The texture, body-near temperature and "weight" might have a soothing effect. Bouncing might be a form of sensory stimulation, similar to hand flapping, that autistic people might engage in just for "having a good feeling". Unfortunately, sometimes the textures one responds to are neither socially acceptable nor hygienic. He might dislike the feeling of the poop being "taken away".

To him it might be a kind of anchor (unfortunately) in a stressful world. It's from his own body and he can control that, so it might help him feel comforted. I know this might sound very strange but those are some of my thoughts.

I don't know unfortunately how to deal directly with the situation. If he finds other "anchors" that can soothe him (textures, movements, music, light), it might become an alternative to the poop. He will have to let go of that.

Being a single mom can be really tough. Sounds like you're being a great and caring mom.

Thank you, Sugamon, for taking the time to respond. It really means a lot to hear other people’s thoughts and perspectives.

Honestly, I’m pretty thankful that the thing with him "bouncing" on his bottom doesn’t happen every day, maybe once or twice a week, but it’s been going on for quite a while now. I had hoped he’d eventually lose interest, but so far, he hasn’t. He hates taking showers, and I’ve told him that’s exactly where he ends up every time he does this, but it hasn’t made any difference. When he went through a smearing phase with his poop, it was pretty much every day, but luckily that passed fairly quickly.

What’s really the most difficult right now are the diaper changes. Today he had a major meltdown after lunch. The diaper change before we ate went really well, he knows it’s part of our routine, so he usually accepts it. But after lunch, when I went into his room to play with him for a bit, I could immediately tell he had pooped. And trying to get him to stop what he’s doing at that moment? It’s just not possible. I tried explaining that he could get hurt or sore if we don’t change it right away, but he doesn’t care, he just wants to keep playing. He’s also getting so big and strong now that it’s really hard for me to lift and carry him. Today, he even tried to push me out of the room and kicked at me when I wouldn’t leave.

I honestly feel so worn down in those moments. It’s like I’m stuck in a loop I can’t break out of. I try to stay calm and patient.

It sounds really hard.

Without going into too much detail toilet training was (is to an extent) a problem for us too. It can be super stressful because on one hand you want to trust your kid to learn by themselves, but on the other hand society is always pushing parents to "raise the kids asap", with parents almost bragging how quickly or early their kids were toilet trained. It's not a competition. Kids are kids, and they are for a reason, because the brain takes time to develop.

We're still strict on routines and things like eating healthy and limiting screen time, but for toilet training we try to keep pressure low. Generally the focus is just on creating a good environment at home. We had fights and crying for a long time too in the past. She doesn't have ASD so toilet training stress can probably happen to any family.

Myself I had toilet training issues into grade school. If your son is high functioning it's not that different from me.

Yes, I totally agree with you. I sometimes get asked why he’s still in diapers and told he’s "too old" for them, it’s honestly so frustrating. It’s nobody else’s business. It’s the same thing with his pacifier, he still uses it at bedtime and sometimes during the day when he’s feeling anxious. It really helps calm him down. I’m working hard on phasing it out completely, but it’s tough.

When it comes to potty training, I’ve just accepted that it’ll take as long as it needs to. I don’t want to pressure him, but I do try to look out for signs that he might be getting ready. So far, though, there really haven’t been any. I sometimes read him books about how the body works, and I also try asking if he feels like he needs to pee or poop, but it’s always a no.

What really gets to me is when he stops and poops right in front of me, and it’s so obvious what’s happening, but he just doesn’t seem to care. I’ll calmly ask him what he’s doing or if he notices it, but nope, he says no and acts like nothing’s going on. It can definitely be frustrating, but I try my best to stay calm and patient.

Know a person who kept sucking his thumb until his early teenage years, simply because he enjoyed it. He's a top lawyer now, graduating from his country's top university with an acceptance rate of 4%. People obviously develop at different paces ...

It sounds like your son is having a lot of sensory sensitivities... Maybe he bounces because it makes it feel "clearer" to him what's going on in his diaper. Him not liking the shower or you changing the diaper might be less about liking the poop and more about disliking the feeling of sudden sensory change.

In my country of origin, some let kids walk nude while they potty train, so the mental distance to sitting down on the toilet becomes shorter, and also to get them off the comforting feeling of the diaper. But maybe that sounds risky...

In our case, our daughter was very stubborn about it and wouldn't budge an inch, despite rewards, rules, routines... Not proud of it but the only thing that worked was us saying we're going to the park to play but everyone has to go to the toilet first. Of course she refused. So we said, guess mom and dad leave then, and you can be at home playing with toys. Once she truly felt like the choice was between being alone or pee, she did it (while hugging me). Of course we never actually left her alone.

We felt really bad about it afterwards because of all the crying, but she became receptive to rewards after that, and things progressed quickly from there. No signs of her being bothered by or even remembering the experience few months later.

Oh, that’s good to hear. I’ve mostly been worried the pacifier might affect his teeth or speech. But it’s really the last thing I try when nothing else works and he’s overwhelmed, it does help calm him down.

I actually tried letting him go without a diaper several times when he was younger. These days, though, he flat-out refuses to be naked. And unfortunately, he didn’t care when accidents happened back then, it usually ended with me stepping in a little puddle of pee.

About the way he bounces or slides around while sitting, at first I honestly thought he was doing it just to annoy me. He could tell I was getting irritated, and it seemed like he thought that was funny. But then I saw him doing it when he was alone too, and I realised it wasn’t just for attention. I hadn’t seen him do it for almost a week, so I hoped maybe he had stopped, but no. Today we were at the store in the afternoon, and he just stopped and pooped right there, like nothing was wrong. I usually try to take his hand and walk away a bit, mostly for his own sake, even though he clearly doesn’t care.

Changing him in a store or in the car is almost impossible now. He either throws himself on the floor and screams, or runs away, and I’m so scared something might happen. So I usually wait until we get home. I do worry a little about him getting a diaper rash since I don’t change him right away, but he’s never really had any issues with that, and I always try to use some cream just in case.

On the way home, I heard him giggling in the back seat and realised he was "rubbing" his bottom, even though he was strapped into his car seat. There was no point in telling him to stop, it would’ve just made it funnier for him.

How well is he able to reason and have a conversation with you?

And do you have any idea how he views you at this point?

Most NT kids come to the realization that being wet and sloppy is unpleasant, so they learn to regulate themselves in these early years. I agree it sounds like he enjoys the sensation.

If you think he is old enough to have a reasonable conversation with you, you could perhaps ask him to switch over to a highly desirable but similar thing (if he likes playdoh, maybe that). And he only gets to do the fun thing if he can go a certain amount of time in regular underpants and keep them clean. Maybe a half hour, then an hour, etc. Then the playdoh goes away until next time. You could put him on the potty immediately afterward. If he doesn't use the potty, no big deal. But it just becomes a routine.

I would never make him do the things. You don't want him to come to associate sitting on the potty with punishment or "getting" to wear a diaper as some kind of relief. Just kind of gently roll him over to the new behaviors like it's not a big thing.

However, he very well may not be able to see things from your point of view at the tender age of 5. You asking him to not use a diaper may seem like ridiculous nonsense. In that case, it may have to just be a game that he doesn't have to understand.

Thank you for taking the time to write such a thoughtful reply. It really shows that you want to help, and I truly appreciate that.

I actually think you’re right about a lot of things. My son is five, but it’s still pretty hard to have those kinds of conversations with him. He can talk and express himself about things he likes, but when it comes to understanding other people’s perspectives or reasoning about why we need to do certain things, it usually just doesn’t click.

I’ve also wondered if part of it is that he doesn’t find it uncomfortable, or maybe he even likes the feeling. That could be a big part of it. And I’ve noticed he doesn’t seem to recognise his body’s signals yet, he doesn’t tell me when he needs to go, or when he already has. I’ve talked to his pediatrician about this several times, and he told me not to rush things, that pushing it could make it worse. He thinks my son probably has trouble understanding the signals from his body and that it’s better to wait and watch for signs that he might be ready.

When he was younger, I tried letting him go without a diaper, but when he had accidents, he didn’t react at all, it was usually me who noticed, like by stepping in it.

Not too long ago, I tried letting him wear just pajama pants. I figured maybe underwear felt too much like a diaper, so I thought it was worth trying something else. But even then, when he had accidents, he didn’t seem to care, he would just keep doing whatever he was doing like nothing happened.

It would be easier to start potty training if there were signs, like if he went off and hid somewhere when he needed to poop, but he’s never done that. He also never says anything afterward if there’s been an accident.

So right now, I’m mostly just watching him closely, trying to follow his pace, and waiting for more clear signs that he might be ready. I know it’ll happen when the time is right, but it can be tough sometimes, especially after trying different things and nothing seems to work.