7 year old still in nappies

[SNparentingProblem2024]

My DS is diagnosed with autism and ADHD. He will be 7 in January. He's still in nappies. He goes to a special needs school but is the only one in his class still in them (there are quite a few children still in nappies in the year below and reception)

He has a moderate level of understanding and everybody comments on how clever he is for a child with his special needs.

That said, he just cannot crack toileting.

We've tried social stories, PECS, incorporating the toilet into his 'now and next' board. Taking him to the toilet every 15 minutes results in nothing but a solitary drip if I'm lucky. Reward charts. Incentives. Endless encouragement.

It was suggested to just leave his nappy off, he pissed and poo'd all over the house. Rug, sofa, everywhere. There was only so long I was prepared to endure that (an entire week with no progress at all). I could cry and I'm crying now

His school thinks that due to his level of understanding he's definitely ready, but we're not seeing it. I've tried so hard to make some headway over half term in the hope of sending him back nappy free.

He has gone through 11 pairs of pants so far today alone. He doesn't seem to realise when he needs to go. He wees a small amount in his pants, frequently, then rushes to the toilet after the fact and no more comes out.

I've spoken to his teacher who said she's going to get some input from somebody who works with the school and specialises in this area as she's as miffed as I am.

AIBU to think this must be a medical issue? Can anybody advise? Is this in any way relatable?

I'm posting here for advice, I'm sorry it's not your regular AIBU 😔

It does sound like he's not physically ready yet.

I'd use pull-ups (possibly with pants inside) for now.

Allowing him to mess himself/your house isn't helping anyone.

Take a look at this thread, might be some useful info https://www.mumsnet.com/talk/special_needs/5197014-what-age-was-your-child-with-asd-toilet-trained

I'm not sure what indicators have made the school think he's ready - nothing about what you've said make it's sound like he's ready.

Just because everyone wishes he was ready, doesn't mean he is. Letting him mess himself isn't the answer.

A referral for further help is a good idea.

Thank you for the replies

So indicators of him being ready (according to school) are his willingness to sit on the toilet, coupled with his level of understanding and general intelligence.

When he was in nursery (which was also a special needs setting) they were pushing the toileting issue before he'd even turned three, so I've had years of people insisting he's ready and going through the same rigmarole to prove that he isn't (because I was worried it looked bad on us that he was still in nappies)

School are wonderful in general and so supportive so I'm not having a moan about them, it's just hard.

I'm going to take a look at the thread suggested now - thank you!

It sounds like you're doing everything you reasonably can and glad that the school is supportive. I'm no expert but repetition and routine are really important for ASD kids so it might be that having a routine of going to toilet every hour and hoping that eventually he'll go and then praising him to the skies might be the best way forward. Is there anything he really loves to play with/watch on a tablet that you could save for being on the toilet as an incentive?

Not sure if this will help but I've just done a toileting for special needs kids course for my son. The tutor said I needed to try and get my son to drink larger amounts of liquid so his bladder was more full and it was more noticeable for him when he was full and needed to go. I remember her saying "if you only sip sip sip, you'll drip drip drip" or something as really nauseating!

That sounds tough. Why is your son's teacher expressing her annoyance? Is she involved in having to change him?

OP, I do sympathise, and I warn you I have no medical knowledge, so this is only a suggestion.

I wonder if he's not getting the sensations most of us have which prompts us to go to the loo? My son was diagnosed with Hirschprung's disease at 4 days old, but that was a very severe case. In HD, the end of the colon lacks the nerves which prompt evacuation of the bowels.

I used to be very well-read on this, but I've forgotten most of what I knew - but I wonder if there are any conditions where, in a similar way, your son is missing these sensations and just doesn't know when he needs to visit the loo. It might be worth checking out.

My son has ADHD but no other disabilities and he can't sense when he needs to go to the toilet and so we have to tell him to go after each meal. I wonder if your son has some sensory related issues which Eare making it more difficult for him?

Have you referred your ds to your incontinence team?

My asd ds was 7 before he fully trained. We kind of cracked it at home with a routine of tries but he still needed pull ups as it was more luck than ability. I think his brain didn't recognise the urge until it was too late but eventually he got it although even now he can miss signs if distracted.

My DS is 6 (7 in Feb) and we literally got it in the last couple of days.

We’ve been working on it gradually. He’s got very limited language - about the level of a 2yo so it’s been a lot of work on routines.

I noticed he did a wee as soon as he got in the bath. So I got the potty and started catching the wee. Then poured it down the loo and said ‘wee in the toilet!!’

Eventually he understood to wait until he saw the potty to wee.

Then I got him to stand over the loo before the bath and he’d do a wee sometimes. When this was more reliable we moved to the next step.

On the next available weekend we went completely bare and he repeatedly pissed the floor. But after we kept on with ‘wee! Not on the floor, in the toilet!!’ (was hard staying upbeat by this point!!). I watched like a hawk and saw his ‘wee stance’ and ran to the loo with him saying ‘do a wee!’ and he did one and we did lots of cheering and high-fives etc.

By the Monday he was weeing in the loo but also having as many accidents. We then had a week of taking off nappy as soon as he was home from school and carrying on as before and half term we did the full week.

Yesterday was his first day with no accidents. He’s not associated it with loos outside the home so he’s having accidents at granny’s but school will help this week and we’ll see what happens.

It’s a lot of work but it’s worth it.

Does he tell you when he's done something in his nappy? I thought that was a major sign of being ready.

Mine is a similar age, has a good understanding of toileting, but just refuses to go without a nappy.

I think it's a combination of sensory difficulties and comfort from a nappy.

Have you tried OT to look at interoception and looking to improve how he understands his own body signals?