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

[emns]

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.

 

[Blighty]

Hi

I'm not an expert around this. With his latest habit what comes to me is that he is seeking a reaction from you. I could be wrong.


If you can, I would think trying to not be phased by his reactions and behaviours, not getting drawn in to his games by using a blank face, and using positive reinforcement for when he is helpful. i.e. rewards and praise may help.

How would it be to see how long he is happy to sit with the dirty diaper, and say come to me when you want your diaper changed and then we can (some sort of treat), reinforcing when he does this by saying 'wow, you did real good to tell me'.

There are probably some great forums for parents of autistic kids who may have experience of this?

Sorry that I can't be of much help here.

 

[Copabanana]

I don't know if you're in the USA or not but your son could well qualify for Regional Center Services. They would could provide behavioral consultants to help you to train your son and to train you how to handle these behaviors. Another idea I have is to contact a Regional Children's Hospital. Their child development center. They would have behavior specialists, child neuropsychologists and psychiatrists that could help you with whatever comes up.

I think you need expert and ongoing help.

I think poop for a child can be reassuring and soothing. It is also highly attractive to them until they are socialized out of it. For example, it is common for children to play in the toilet. When autism is in the mix, I think you need people to help you with expertise.

Here is a link about fecal smearing by autistic kids that might be helpful. Fecal Smearing in Autism. Oh, Poop!

 

[emns]

Hi

I'm not an expert around this. With his latest habit what comes to me is that he is seeking a reaction from you. I could be wrong.


If you can, I would think trying to not be phased by his reactions and behaviours, not getting drawn in to his games by using a blank face, and using positive reinforcement for when he is helpful. i.e. rewards and praise may help.

How would it be to see how long he is happy to sit with the dirty diaper, and say come to me when you want your diaper changed and then we can (some sort of treat), reinforcing when he does this by saying 'wow, you did real good to tell me'.

There are probably some great forums for parents of autistic kids who may have experience of this?

Sorry that I can't be of much help here.

Hi,

I think you're probably right about what you're saying. I've noticed that sometimes he tries to provoke me, and he knows I can easily get upset. And I guess that's what he finds amusing. I don't know how to handle this.

My mother thinks I'm very nagging and that I stress him out. She believes that I check if he needs a new diaper too often, a few times an hour, which disturbs him. Instead, it's enough to do it once every 1.5-2 hours. She thinks he's old enough to tell himself, like he does when he's hungry. I personally feel like I'm someone who likes to be in control, so it's hard to change, but maybe that's what irritates him? I should probably take it easier as you suggest and wait for him to start feeling uncomfortable and tell me himself, instead of running around and chasing him as soon as he's pooped.

His new behavior of sometimes rocking/sliding on his bum after pooping is something I don't understand. I react immediately, and he finds it very amusing, of course. I don't know if he finds it fun or if he's just trying to provoke me. I've tried explaining to him several times that diaper changes will take ten times longer if he keeps doing that, or that he'll end up in the shower. But he just finds it funny. Maybe I need to give him less attention instead?

 

[Deni D]

emns ~ welcome. We don't have anyone who's personally familiar with working through particular challenges for someone with autism as they are growing. But regardless we are here to support you as a parent with your son as much as we can.

Besides us, with autism so globally recognized, I feel there has to be somewhere locally you can turn to where someone can help you with understanding, communicating, and teaching your son daily/social at home tasks in a way that works for him. If you do a WEB search with something like "Autistic Parent" and your country I think you will find a place to start.

I met a young woman who teaches young autistic children here in the US just last week. If you have a hard time finding an autism specific resource send me a private message and I will contact her to see what she can find. Click on the envelope on the top right here, and then select "Start a new conversation" and fill my userid in "recipients".

With that said, I can see some similarities with what you are going through that I can relate to.

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.

I seems to me he likes the feeling, but then made light of it when you addressed it, because after all he's 5, a kid, but does seem to have picked up somewhat of a social que from you that it was not appropriate because he did stop. My son did things that baffled me when he was younger, not around toilet training, but other things and they were things I knew were not age appropriate, but didn't know what to do about them.

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

Single parents put a lot of pressure on themselves. If you had a partner who was engaged then I would expect it would be less challenging but often that's not the case in parenting. Having family involved is a very good thing also though. If you find resources to come help you in your home it seems maybe your mother might be helpful for you.

I personally feel like I'm someone who likes to be in control, so it's hard to change, but maybe that's what irritates him?

Do you feel like you like to be in control or you "have" to be in control for your son's wellbeing? Do you feel like you are flying without a net? I remember so wanting a roadmap. I really paid attention to what other parents did, what worked for them. It was more like they were handed kitty cats and I somehow got a lion, didn't work the same with a lion ~ no matter what lame advice I tried to follow from "child experts" and parents who thought they knew best.

Keep posting we are here for you.

 

[emns]

emns ~ welcome. We don't have anyone who's personally familiar with working through particular challenges for someone with autism as they are growing. But regardless we are here to support you as a parent with your son as much as we can.

Besides us, with autism so globally recognized, I feel there has to be somewhere locally you can turn to where someone can help you with understanding, communicating, and teaching your son daily/social at home tasks in a way that works for him. If you do a WEB search with something like "Autistic Parent" and your country I think you will find a place to start.

I met a young woman who teaches young autistic children here in the US just last week. If you have a hard time finding an autism specific resource send me a private message and I will contact her to see what she can find. Click on the envelope on the top right here, and then select "Start a new conversation" and fill my userid in "recipients".

With that said, I can see some similarities with what you are going through that I can relate to.

I seems to me he likes the feeling, but then made light of it when you addressed it, because after all he's 5, a kid, but does seem to have picked up somewhat of a social que from you that it was not appropriate because he did stop. My son did things that baffled me when he was younger, not around toilet training, but other things and they were things I knew were not age appropriate, but didn't know what to do about them.


Single parents put a lot of pressure on themselves. If you had a partner who was engaged then I would expect it would be less challenging but often that's not the case in parenting. Having family involved is a very good thing also though. If you find resources to come help you in your home it seems maybe your mother might be helpful for you.


Do you feel like you like to be in control or you "have" to be in control for your son's wellbeing? Do you feel like you are flying without a net? I remember so wanting a roadmap. I really paid attention to what other parents did, what worked for them. It was more like they were handed kitty cats and I somehow got a lion, didn't work the same with a lion ~ no matter what lame advice I tried to follow from "child experts" and parents who thought they knew best.

Keep posting we are here for you.

Thank you, Deni D, for your detailed response.

I worry a lot about him not being able to handle things himself, like telling me when he's hungry. I'm afraid to rely on him to speak up or ask for help when needed. Instead, I find myself constantly asking and nagging him, which stresses him out and irritates him. My mother and friends have mentioned several times that I treat him like a baby.

The really challenging part, as I mentioned earlier, is all the diaper changes. He never tells me when he's peed/pooped, so I end up checking very often. I'm not sure why, but it makes me very stressed, and my mom has told me several times that I can't keep doing that. He's a big boy and will definitely tell me when he feels uncomfortable. If I see that he's pooped and ask him, he just denies it. He's not interested in getting changed.

His new behavior of rocking/sliding on his bum after pooping is something that doesn't happen every day or every time. This week, it happened twice as far as I can remember. Both times, he was in his room when I happened to see it. So, I went in and asked him what he was doing. He first smiles at me as usual and then wants me to leave. Previously, it happened when I was nearby, but now he seems to sneak away more. I thought he did it to provoke me because he knows I react immediately.

It's difficult to know how to behave in these situations and how to get him to change his behavior.

 

[Smithmom]

Sorry, I have more answers than questions.

First, has he done this in other settings eg family members homes, nursery school, etc. That is, when you're not there to react?

Second, does he have sensory issues? Potentially rubbing it on himself in the diaper could be some kind of sensory issue? I've only heard of autistic kids wanting skin stimulation eg brushes. But I guess there could be a reverse sensory issue? Have you asked him how it feels or why he likes it?

My son only agreed to give up diapers when he observed a friend's same age child not wear them and heard the 2 Moms discussing it. So competition drove him to give them up. But he also knew the time was coming because he couldn't go to nursery school in diapers and he wanted to go to school!

There's another school of thought, after you try lengthening the period between changes, which is to let him come to you. At some point it has to make his skin uncomfortable. The theory of let natural consequences take effect. Having a sore bottom may inspire him to ask least negotiate a changing schedule that reduces the stress on both of you? A thought anyway.

 

[Smithmom]

Sorry, I have more questions than answers.

First, has he done this in other settings eg family members homes, nursery school, etc. That is, when you're not there to react?

Second, does he have sensory issues? Potentially rubbing it on himself in the diaper could be some kind of sensory issue? I've only heard of autistic kids wanting skin stimulation eg brushes. But I guess there could be a reverse sensory issue? Have you asked him how it feels or why he likes it?

My son only agreed to give up diapers when he observed a friend's same age child not wear them and heard the 2 Moms discussing it. So competition drove him to give them up. But he also knew the time was coming because he couldn't go to nursery school in diapers and he wanted to go to school!

There's another school of thought, after you try lengthening the period between changes, which is to let him come to you. At some point it has to make his skin uncomfortable. The theory of let natural consequences take effect. Having a sore bottom may inspire him to ask least negotiate a changing schedule that reduces the stress on both of you? A thought anyway.

 

[emns]

Sorry, I have more answers than questions.

First, has he done this in other settings eg family members homes, nursery school, etc. That is, when you're not there to react?

Second, does he have sensory issues? Potentially rubbing it on himself in the diaper could be some kind of sensory issue? I've only heard of autistic kids wanting skin stimulation eg brushes. But I guess there could be a reverse sensory issue? Have you asked him how it feels or why he likes it?

My son only agreed to give up diapers when he observed a friend's same age child not wear them and heard the 2 Moms discussing it. So competition drove him to give them up. But he also knew the time was coming because he couldn't go to nursery school in diapers and he wanted to go to school!

There's another school of thought, after you try lengthening the period between changes, which is to let him come to you. At some point it has to make his skin uncomfortable. The theory of let natural consequences take effect. Having a sore bottom may inspire him to ask least negotiate a changing schedule that reduces the stress on both of you? A thought anyway.

No, I've only observed him doing this at home. At nursery school, they've informed me that he never informs them when he's pooped and instead tries to hide it, just like at home.

He has some issues with things like seams and laundry tags on the inside of clothes. He finds that uncomfortable.

I've asked him a few times when I've caught him doing it and why. But he just laughed at me. Lately, he's only been doing it in his room, and when I've seen him, I've gone in and told him to stop. But recently, he's been getting angry and wants me to leave his room.

I try to keep an eye on him and change him as soon as I see that he's pooped, precisely because I know he won't tell me. I think maybe this has made him so secretive about it now, but I don't want him to go too long with it, even if I apply cream. I might be a bit overprotective, I've been told that many times.

It's happened a few times when we've been out for a while, and when I try to help him take off his clothes when we get home, he gets angry and wants to keep them on. I thought his behavior was strange at first, but then I realized it was because he didn't want me to see that he'd pooped. He'd managed to keep it a secret while we were out and probably thought he could do the same when we got home.

It might be a good idea to wait and see if he comes to me and asks for a new diaper when he needs one. I could pretend not to know that he's pooped and just let him be. Maybe I should act similarly when I see him rocking/sliding on his bum in his room? Instead of rushing in and telling him to stop, perhaps I should look away and not react at all to see if he gets tired of it? It might be better to try to take it a bit easier and not get provoked. At first, I thought he was trying to provoke me because he knows I easily get provoked, but now he's sneaking around with it in his room instead.

I don't know how to act, it feels like everything just gets worse no matter what I do

 

[emns]

Hello,
It's been a while since I last wrote, so I thought I'd give a little update on how things have been going over the past few months.

I've been trying to take things more calmly and not react as strongly as I did before. I tried what some of you suggested, which is to wait to change his diaper after he's pooped and see how he reacts. This has worked very well. He is much calmer, and we don't have the “fights” we used to. Now, I wait and change his diaper at regular times, like before we eat or go out. He is more prepared and knows what to expect. He is very routine-oriented and doesn't like interruptions or anything unexpected.

I had expected him to feel uncomfortable sitting in a dirty diaper and eventually come and tell me, but he doesn't seem to mind at all. I often apply cream to prevent diaper rash or irritation, which might be why he doesn't feel uncomfortable.

What's a bit tricky is when we're out. When he was younger, he used to hide when he needed to poop, but he doesn't do that anymore. For example, if we're shopping, he can just stop wherever he is, and he doesn't care if there are other people around. I usually take his hand right away and move to a more "secluded area" in the store so he gets a little privacy.

Trying to get him to a restroom or changing room to change his diaper is completely impossible. There's no point in trying anymore, it just ends in a major meltdown in the store. I usually tell him that we'll take care of it when we get home, and then he usually smiles and looks satisfied.

Does anyone have any tips or ideas on how I can move forward and help him understand that he can't walk around with a dirty diaper?
I've tried to get him to go into the bathroom at home when he needs to poop, to help him understand that this is something you do there and privately, even if he's doing it in his diaper. But he's completely uninterested.

 

[Crayola14]

Maybe try to get him excited about starting school. Explain that he has to be out of diapers to start kindergarten. Tell him all the fun things about school—friends, music, learning, games, exercise, sports, etc. Get him really looking forward to starting kindergarten. Otherwise, you’ll have to homeschool him.

 

[Motherofthree]

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.

Maybe try to get him excited about starting school. Explain that he has to be out of diapers to start kindergarten. Tell him all the fun things about school—friends, music, learning, games, exercise, sports, etc. Get him really looking forward to starting kindergarten. Otherwise, you’ll have to homeschool him.

Is an Early Intervention program involved? If not, I would recommend you find a an Early Intervention or Child Development program in your community. They will screen him for services ( which he most likely qualities for and a team of therapists, including behavioral therapy will complete a plan of care for. This is truly critical for your child's well being and future and to give you support and education as well.

 

[Nethialo]

Kids with autism can react differently to diaper changes. Maybe try distracting him with a toy or video during changes to make it less stressful. If it keeps being tough, chatting with his therapist might help. They need special atention so getting help is what I recommend.

 

[emns]

Through the GP, I have been put in contact with a therapist. We have met with her twice. I was recommended to create a schedule for my son so he could see what would happen during the day and be prepared for it. The schedule has worked very well, in my opinion. We go through it and put it together jointly.

I was also advised to do all diaper changes in the bathroom. I have tried to follow this advice over the past few weeks, and it has worked quite well.

On my own initiative, I have also tried to take him to the bathroom when I see that he is pooping, in order to help him understand that this is something you do in the bathroom and privately. However, this has not worked at all, he gets very upset and says that he is not pooping. Perhaps I am moving too quickly?