5-year-old boy who refuses to have his diaper changed. Need advice

[emjn]

Hello,

I have a son who has passed 5 years old and is diagnosed with autism. Although he's very high functioning, he is still in diapers. He shows no signs of being ready to stop using diapers. He never tells me when he has peed/pooped. Sometimes he doesn't even go to a private place when he needs to poop. For example, he can be sitting on the sofa and pooping while we watch a movie, at the dinner table while we eat, or when we're out. He doesn't care at all.

In the past few months, I've had significant difficulties changing my son's diaper when he has pooped. He refuses to let me change it. He wants to keep it on and continue with what he was doing. When I try to change him, he gets extremely angry, runs around, and screams. If he's only peed, it's usually a bit easier. I don't understand why he behaves like this. He would quite happily sit in his dirty diaper all day if I let him, it doesn't bother him whatsoever!

I have now noticed that he has started exhibiting a new behavior that I have never observed before, which worries me a little. The first time I noticed this was a week ago while we were eating. I saw that he was pooping, but I didn't make a big deal out of it, thinking I would take care of it after we finished eating. But this time, he sat on the chair and started sliding his bum back and forth while giggling. I asked what he was doing, but he just laughed and stopped. If this had only happened once, I wouldn't have reacted, but now he has done it several times when he has pooped. I don't know how to handle this. Is this common? Or how can I get him to stop doing this?

He's so kind and sweet otherwise, but as a single parent, this is starting to become challenging to handle.

 

[Misty Avich]

Tough love is the best option. These days many Aspie parents believe in letting their autistic children do whatever they want because they're scared that teaching or training them important life skills might be too stressful for the child (not saying you're doing anything wrong or letting your child do what he wants, I'm just speaking in general terms). But I don't know what your parenting style is like and I am not here to judge, as I'm sure you are a great parent and doing everything you can. And I don't know what your child is capable of and what he isn't, but is there a way to train him out of diapers, or isn't it that easy? Sorry if this is unsolicited advice, if it is then you can just ignore this as I'm quite renowned for offending people without meaning to on these forums. But this is not a judgement against you or your child. But it might sound like your child is becoming too comfortable in diapers, maybe he finds some sort of sensory comfort in soiled diapers. But you (as in second person, not you) can't give a child everything they want just because they're autistic. For example if an autistic child has rather unhygienic or unhealthy comfort habits, it is best to try and teach them to switch their comfort habits to something more practical, to make it easy for everyone involved. Maybe some outside support (a social worker or a therapist) could help if you are struggling.

But, again, please don't take this as criticism or judgement against you or your child. This might not even apply to your circumstances, so if this is rather unsolicited then you can ignore this post.

 

[MNAus]

I can imagine it's challenging indeed. Toilet troubles go along with quite a few young people with autism. There are many factors that could be at play. For example, some find the idea of the toilet troubling, some have difficulty telling when there's an urge, some have fears about the process. After a while the avoiding behaviours can become engrained as habits. Does he go regularly or does he "hold back" and become constipated?

I would suggest you have a chat with a paediatrician and, I'm afraid, set yourself for a bit of a long haul (sorry!). They will likely need to strike a few possibilities off the list. What might be suggested is sitting on the toilet like clockwork. As in every two hours, it's time to sit on the toilet. He doesn't have to wait until he goes to get off, but it should be a decent 'effort' (not that he has to push or anything, but that he gets the chance to go if he needs to). If he's constipated they might suggest a gentle laxative (I'd avoid paraffin based with ASD kids, hopefully they might suggest a gel).

ETA: Should have asked also, how did the whole toilet training period go? Any ideas why that step didn't fully work out?

 

[Aspychata]

My daughter wanted to stay in diaper land also. So my go-to? Was no shaming. Bringing a potty seat to playground with her little friend. Her little friend was also transitioning out to no diapers. She saw that, and realized little people do use potty. l lived on a reservation for almost two years, so nobody was around us at the playground. Finally bribery . Halloween candy in bathroom. Then the candy just disappeared once going potty turned into habit. I knew of one mom putting cheerios in the toilet for their sons to aim at. I believe their whole family is on the spectrum by the way. I am not opposed to bribery, sometimes it's the only thing that works with toddler's minds. M&M's helped the potty training wars at age 4.

 

[Fino]

It might be worth considering ABA therapy, just don't be too alarmed when the rest of this forum says no way.

 

[Kayla55]

My boy was also not reaching toilet milestone, hence we left creche as I didn't want to talk about it.
What goes in (schedule timing) must come out so this was how I tackled bed wetting....no drinks after 4pm until morning
So have big buzzer that has sound to drive him nuts .....when it's about poor time the buzzer reminds him to prepare....and gosh....patience (need loads n tons of it)
Mine eventually got it, some kids can wet bed until age 13

 

[emjn]

Thank you, everyone, for your responses and advice.

I'm trying to teach him how things work. My younger sister, who sometimes visits us, thinks I'm too stressful. My son doesn't have time to finish pooping before I'm there nagging and pulling him, she claims. Of course, I want to change him right away so he doesn't get diaper rash. Now I always apply protective ointment on him, and he has never had problems with diaper rash before, even if he has had the diaper on for a while.
But these outbursts he has when I try to change his diaper after he poops, I don't know how to handle. The pediatrician I've been in contact with before says I should just stay calm and give him some time. Now, when I try to change him, he just gets angry and starts running around, so I have to chase him all over the house (which he thinks is fun). Once I finally catch him, he wriggles and kicks to break free. I can't handle these outbursts anymore every time
Unfortunately, his recent behavior has led me to avoid certain situations. For example, I may take the opportunity to go grocery shopping when I'm alone so he's not with me. If he were to poop, for instance, I would never be able to get him to the bathroom to change him, he would have a major meltdown in the store. The pediatrician has previously advised that it's good for him to be out and about as much as possible to see and learn. But I don't know how to handle these situations if, for example, he were to poop himself. He's usually very calm and well-behaved when we're out. I may be worrying too much, but unfortunately, that's just the kind of person I am. :/

I have tried to potty train him several times, but he shows no interest in it at all. He doesn't seem to know when he needs to pee/poop; he doesn't seem to get those “signals”. I've tried letting him go without a diaper, but it just ends up with him peeing everywhere. He also doesn't react to accidents; he just continues with what he was doing. Then he peed very often; not much each time, but probably a couple of accidents per hour. I've tried to get him to sit on the potty sometimes, but he doesn't want to sit there.
I have contacted the pediatrician a couple of times regarding potty training and explained this. They have said that he's not ready and that it may take a long time before he is. They have mentioned that when he starts showing signs such as asking for a new diaper or staying dry for longer periods during the day, it might be appropriate to start potty training. But he's not doing any of that now.

 

[Misty Avich]

I'm sorry you are going through this. It must be so hard, being so you've tried everything you can. Peeing and pooping is an everyday bodily function so I assume you have this challenge every day. I'm not sure what else you can do.

 

[Aspychata]

My daughter wouldn't use the toilet either, but l noticed she wouldn't do diddly squat in her bath, so l knew she was ready for the transition. She would get out of the bathtub to use the toilet, but like your son, outside of baths, she wasn't motivated.

 

[jsilver256]

Is he your only child?

My older child went through a "normal" progression - he started being dry more frequently and staying dry through naps - then he started mimicking pulling pants up and down - so we did potty training and he was fine after a few weeks of accidents. Very textbook.

My younger child shows many more ND traits. I don't recall him showing any physical signs of being "ready." He watched a video (Daniel Tiger) and decided right then he was potty trained. He had just turned 2 and he still wasn't speaking. He wasn't ready to be potty trained. But there was no convincing him otherwise. He just started throwing his diapers off. We then tried to do "formal training" to speed it up but he wouldn't listen to us or sit on a child potty.

It was a messy few weeks but he did actually potty train himself at a young age. I tell other parents this story and they just look at me bewildered. Per my mother, I did the same thing (decide to potty train myself before ready and then did it).

So maybe it's just not an ASD thing to wait for "normal" signs of readiness. Maybe simply exposing him to videos, books, etc that he enjoys and letting him get the idea?

 

[Yeshuasdaughter]

My daughter was potty trained before she was three. But still, this video, OH MY GOODNESS!, this is what potty trained her, more than the schedules, looking for cues, sticker charts on the wall, or the potty seat, or anything.

She would watch it over and over, she loved it.

I've given this video to others, and they've had success with their children.

The story is of a little mouse who has accidents sometimes, because he's having so much fun, he doesn't want to go to the bathroom. But Bear and his other friends remind him that the fun will still be waiting, after he goes to the bathroom.

It's important to listen to your body, and use the potty. Then when you get back from the restroom, you can have even more fun. That is the reason many children are hesitant to use the bathroom. They are afraid of leaving their game or task behind. But the toys, and all their friends, will be waiting happily. That was the key for us in potty training.

Even though she was like two years old, the story clicked with her, and she was so into it.

Also the video explains hygiene in a way that small children can comprehend.

It's a fabulous resource.

It's worth getting on DVD, in order to have it as a physical resource.

The link below takes you right to the video. The scenes are divided into a playlist on YouTube.

Loading…

youtube.com

 

[Mary Terry]

That is really tough. If his pediatrician can't be more helpful, I'll seek out advice from a childhood autism expert, if you can find one.

I bribed my three kids with M&M candy. It worked very well although I'm pretty sure the potty training "experts" would advise against doing it. All I know is that it worked.

My daughters were easier to potty train than my son. His daddy taught him how to "aim and shoot." It was about that same time that my son started referring to his private parts as his "little man" which cracked me up. Husband denies he taught him to say that, so we have no idea where he got that name.

 

[emjn]

Is he your only child?

My older child went through a "normal" progression - he started being dry more frequently and staying dry through naps - then he started mimicking pulling pants up and down - so we did potty training and he was fine after a few weeks of accidents. Very textbook.

My younger child shows many more ND traits. I don't recall him showing any physical signs of being "ready." He watched a video (Daniel Tiger) and decided right then he was potty trained. He had just turned 2 and he still wasn't speaking. He wasn't ready to be potty trained. But there was no convincing him otherwise. He just started throwing his diapers off. We then tried to do "formal training" to speed it up but he wouldn't listen to us or sit on a child potty.

It was a messy few weeks but he did actually potty train himself at a young age. I tell other parents this story and they just look at me bewildered. Per my mother, I did the same thing (decide to potty train myself before ready and then did it).

So maybe it's just not an ASD thing to wait for "normal" signs of readiness. Maybe simply exposing him to videos, books, etc that he enjoys and letting him get the idea?

Yes, that's correct, he's my only child. I've tried reading books, showing him videos, and even using apps about how the body works and where we pee/poop. But he doesn't seem to understand or maybe he just doesn't want to.
I had hoped he would show some interest in this, but there's nothing. He just finds it amusing if suddenly there's pee on the floor. Usually, children hide and want to poop in peace, but that's not something my son does. He shows no signs at all when it's "time to go." Instead, out of the blue, you'll notice a familiar smell or see a big bulge at the back of his pants. Sometimes I joke with him and ask if we should go see what he's hidden in his pants. But lately, he just gets angry and starts fighting. It's really tough. I wish I knew why he does this

My daughter was potty trained before she was three. But still, this video, OH MY GOODNESS!, this is what potty trained her, more than the schedules, looking for cues, sticker charts on the wall, or the potty seat, or anything.

She would watch it over and over, she loved it.

I've given this video to others, and they've had success with their children.

The story is of a little mouse who has accidents sometimes, because he's having so much fun, he doesn't want to go to the bathroom. But Bear and his other friends remind him that the fun will still be waiting, after he goes to the bathroom.

It's important to listen to your body, and use the potty. Then when you get back from the restroom, you can have even more fun. That is the reason many children are hesitant to use the bathroom. They are afraid of leaving their game or task behind. But the toys, and all their friends, will be waiting happily. That was the key for us in potty training.

Even though she was like two years old, the story clicked with her, and she was so into it.

Also the video explains hygiene in a way that small children can comprehend.

It's a fabulous resource.

It's worth getting on DVD, in order to have it as a physical resource.

The link below takes you right to the video. The scenes are divided into a playlist on YouTube.

Loading…

youtube.com

I'm very familiar with "Bear In The Big Blue House." It's one of his favorites that he can watch over and over again.

---

Tomorrow, I had planned for us to go to a larger shopping center. But I really don't feel like taking him with me. I'm afraid he'll have a meltdown in the store, and I'll have trouble handling it. It usually goes really well to walk around in stores with him, but after what I've experienced at home lately, I'm worried and hesitant. It's also challenging to always adapt to him.

Yesterday evening, he had another major meltdown. He was sitting at his table in his room, playing. When I looked in, I saw him sliding his bum back and forth again and laughing when he saw me. I don't know how long he had been doing this or why he finds it so amusing now. But when I went in, I immediately noticed the smell, and of course, he had pooped. There was no point in trying to get him to come voluntarily as he was just having fun at my expense. So, I just went in and lifted him up, trying to take him to the bathroom. But he reacted as usual with the worst meltdown and started waving and hitting as hard as he could for me to let him go. I'm glad he didn't hit me worse than he did. I know he's not aware of this and is doing everything to get me to let him go. It just makes me so sad. I'm afraid of ending up in similar situations when we're out. I don't know how to handle these meltdowns

 

[Misty Avich]

Where I come from it's frowned upon for strangers to react to child meltdowns in supermarkets, so if you have a small child with autism who'll have a meltdown like you describe, it's completely normal, acceptable and tolerated by the general public. But I take it you're not from the UK (as you used the word "diapers"), so I don't know how child meltdowns are perceived in public in other countries. People should mind their own business, but I do understand how annoying hearing a child screaming is.

 

[emjn]

Where I come from it's frowned upon for strangers to react to child meltdowns in supermarkets, so if you have a small child with autism who'll have a meltdown like you describe, it's completely normal, acceptable and tolerated by the general public. But I take it you're not from the UK (as you used the word "diapers"), so I don't know how child meltdowns are perceived in public in other countries. People should mind their own business, but I do understand how annoying hearing a child screaming is.

That's true, I'm not originally from the UK. It's indeed unsettling when people stare and wonder what's happening. They might even speculate if the child is being mistreated or what's going on, questioning why the parent isn't doing anything to calm the child. But I agree, they should mind their own business.

We went to the shopping center today, and surprisingly, it went well. I had really prepared myself for the worst. I don't know if it was the ice cream I promised him if he behaved that did the trick. Or perhaps it was because there were a lot of other people around. I even got him to the toilet before we ate to change a wet diaper, thinking he would have a major meltdown at the shopping center, but no. It went really well. Now I've bought a new toilet seat and a little stool for his feet, let's see if he can become interested in that.

When we were about to go home, I really feel like a terrible and mean mom. He started getting so cranky and tired that he could barely walk to the car. When I was about to fasten him in the car seat, I noticed he smelled like poop. I tried to look into his diaper to see if I could see anything, but it was difficult to see anything while he was sitting in the car half asleep. I asked if he had pooped now, and he just laughed at me, which meant he had. I didn't want to attempt to change him when he was already cranky, so he had to wait until we got home. I feel incredibly mean and not good about it. I usually always change him right away. Now he slept the whole way home, and he didn't seem bothered by it.

I don't know how long he had been walking around with poop in his diaper, but it must have been a while since it had started to dry on his bottom. I don't understand how I could have missed this when we were walking around the stores. He showed no signs of this as usual. I don't understand why he doesn't want to let me know.Now I'm so worried that he might get an infection or something after having so much poop around his genital area for so long. He had a long bath, so I hope I got him properly clean. From what I can see, he seems to have avoided diaper rash and inflamed skin, thankfully.

 

[Misty Avich]

You don't know that he had poop in his diaper for that long, it might have been just on the way to the car. Sometimes parents don't always change the diaper the second the child has pooped, especially when the child is sleepy. So don't go thinking that makes you a bad parent. You're doing all you can. You love your son to the moon and back. Just keep up the good work. Maybe in time he will grow out of diapers.

I guess my parents were quite lucky with me because I was out of diapers by 22 months, only wearing them at night until age 3. But I'm not saying that to make you feel bad or anything, as all children are different and I know you've done/doing everything you can.

 

[emjn]

I don't understand why he can't tell me. He lets me know when he's hungry or when he wants something else, but not when he needs a new diaper. I want nothing more than to help him. Anyway, he's been energetic and happy as usual, so I hope he's okay after yesterday's incident. I guess I worry too much, as usual.

Now the question is how to introduce the toilet seat and stool we bought yesterday in a way that isn't scary. I shouldn't have too high hopes since he hasn't shown any interest before.

How do you deal with people who have difficulty understanding that even older children can wear diapers? I'm so tired of getting that question. I met some friends yesterday who felt the need to comment on it. Do I have to try to hide the fact that he still wears diapers? It's really hard to find clothes that he likes, especially since he prefers joggers.