Under pressure to toilet train severely autistic child. AIBU?

[Dsandnappies]

My DS is 3.5, with a diagnosis of ASD and he has an EHCP. Socially, emotionally and intellectually he functions at around 12-18 months old so is quite delayed. He has limited speech and understanding. Paediatrican has referred to him as being on the severe end of the spectrum.

He's not toilet trained because he's just not ready. He doesn't know when he has been, or needs to go. He has no concept of what a toilet is for. He doesn't recognise when he's wet/dirty. If he can get inside his nappy when he has pooed then he will play with it such is the level of his understanding of it (he has never done this at nursery)

His nursery are putting pressure on me to get him out of nappies. They wanted me to switch him to pull ups and sit him on the toilet constantly every day. I reluctantly agreed for a quiet life because they were insisting he was ready, but I knew it wouldn't work.

I trialled it for a few weeks with no results so reverted back to nappies and stopped putting pressure on him to sit on the toilet every day. I'm expecting another baby in a few weeks so to be honest can do without the additional work when I know he isn't ready.

Nursery manager brought it up again yesterday and I told her he's not ready, she said I have to try again and stick at it because they always want to get the children out of nappies by the time they start school. Personally I think the insistence is driven by them wanting to make life easier for them, not nessecarily DS.

This is a nursery for children with SEN btw, and he will be going to a school for children with with autism.

I know my child better than anybody else. I know he's not ready. He might not be ready for another year, he might still be in nappies at 10. Some children with severe ASD are still in nappies at 15.

WIBU to put my foot down and ask them to back off about it or do you think they're in the right?

I think this is a massive red flag and would be looking for an alternative nursery ASAP.

I'd tell them to piss off frankly assuming he is as incapable of toileting as he sounds. Or lie

"Oh yes we do it all the time at home" and cross your fingers behind your back.

Look at the ERIC website which show the legal stance and provide advice how to deal with things.

It’s an awful approach from any nursery but particularly a SEN one

You know him best, but it does make sense to start as early as possible to identify areas that he needs support in. Whilst there are many people with intellectual disabilities who use incontinence pads, it's less hygienic. Even with the best care and support in the world, adults who use incontinence pads long term are more likely to suffer broken down skin and UTI - its harder to change a nappy on an adult, once they are 5 or 6 years old they don't fit on a changing table any more and so are limited to places that have adult changing facilities nearby.

This is ridiculous. I have two children with ASD. 1st was trained relatively easily but a bit late.

Second is utterly miles away at 3y 7m

His nursery specifically said to not put pressure on him or ourselves, they have no issues changing him and are overwhelming supportive.

He’s in a mainstream school nursery as he’s not got his EHCP yet.

I’d be reminding them of the legal position and make it clear you won’t discuss it again.

Idiots.

Did a specialist say it wouldn’t be possible to potty train him? If so bring in a medical note. If not get their advice (the specialist’s) as to what to do and how to train. It’s not always impossible. One of my friend’s dc is severely autistic & the only milestone he ever achieved was being potty trained. But you do need to work with the nursery to find a solution.

That would say nursery don't understand your child. Not a good sign.

I'd be looking for alternative provision ideally, but given your situation and that he will be in school next year I'd maybe just be very firm with the nursery manager that he isn't ready and they are not to push it.

Thank you for the replies!

I'm friendly with another mum who's two children attend there, she has a child a couple of months older than my DS, who has autism, and another child who's 2 who also attends but has no known SEN (they will take siblings of attendees) - they've even been putting the 2 year old on the toilet without any discussion with her at all

They appear obsessed with toilet training and completely tone deaf.

@herculesoffline

How you you suppose you train a child without the language skills to understand and no understanding that he’s soiled or wet himself?

OP isn’t saying she’ll never train him, just that it’s not realistic now.

Mines 11yrs and not trained. Some mainstream schools/nurseries dont get it

Do whatever you feel is best for your child. If you don’t want to continue it firmly tell her no and say it’s not something you will be discussing with her again until you feel it’s the right time. (It doesn’t sound like the right time from what you’ve written anyway) and you don’t HAVE to do anything she has said. Ridiculous.

My ds was wearing nappies for school at 5. He’s nearly 8 and I wouldn’t say he’s reliably dry or clean now (he’s been in underpants in the day for over 2 years) he still wears pull ups for bed. Has to take spare clothes in a bag to school everyday and sometimes needs a change. He’s wet himself twice at home today.

He goes to a SN school and children in his year 3 class still wear nappies full time, it’s part and parcel of additional needs.

Ds toilet training is still ongoing years down the line so it’s not something that happens over night.

Absolutely ridiculous

I work in a special school, specifically for children with autism and lots of our children are still in nappies.
Don't let them pressure you if he's not ready.

Could you contact the school that he'll be going to to get their position on having children in nappies to shut the nursery up?

Change nursery ASAP. They are totally out of order

You know your child better than anyone. YANBU.

In an ideal world he would be out of nappies by the time he's in school but there's no such thing is there, especially with SN children.

All children are different and learn at their own pace and just because there may be some children there who are toilet trained (I don't know that there are) that doesn't mean it's acceptable to expect it of all of them.

I'm 27 so not exactly a young young mum but decades younger than the nursery manager and I get a distinct impression that she feels she knows best and can be quite patronising.

Paediatrican and HV's advice has always been to try it when he shows signs of being ready.

I think I'll draft an email to send ahead of Monday morning. If the pressuring carries on I'll be having talks with his EHCP caseworker too.

Your ds is functioning at 12-18 month level you said.

Ask her how many 12-18 month olds she knows who are toilet trained.

Ridiculous. My son is autistic and at that age he was non verbal with no clue about toilets etc. He also went to SEN nursery and they never said anything about toilet training him because they knew he wasn't ready.

He started school in nappies. A special school, and they also had no problem with it because lots of kids there were still in nappies, of all ages.

He was ready for toilet training at 5.5 and got the hang of it pretty quickly.

He's not ready and they need to accept that. If anything they might delay him as he could get fearful about toilets if he's made to sit on them constantly.

I think you have to stick to your guns. Pressuring children with ASD to do anything at all can easily go wrong. There are all kinds of behaviours to do with toileting which can develop.

I hope all goes well with everything. I'm sure it will be best to be relaxed about the whole thing.

I was relaxed with my son who has ASD, and when he started Nursery and Reception, they were very understanding.

They are absolutely being ridiculous. Definitely put it in writing they’ll see in black in white what they’re asking

Telling them to back off isn't strong enough. What the actual fuck.

He is your child. He is not ready. I know that because his mother said so. End of.

They've really made things hard for me at home too. DS won't lay down to change his nappy now, because nursery have instilled in him that he has to stand up (pull ups)

So whenever he has a dirty nappy at home I have to change it with him standing up, it's not an easy task at 8 months pregnant when he's done a number 2.

If I encourage him to lay down to change his nappy he gets upset and stressed

I had no problems with him at nappy time until they started forcing this crap and now it's made life twice as hard at home.

I’m a teacher in an SEN school, I used to teach reception and it was very rare for a child to start our school at 4 toilet trained. By age 6/7 we would have a few trained but still the minority, it’s not uncommon for children with severe autism to still be in nappies at secondary school.

I have also found pull ups completely useless for toilet training children with very little language, the most effective way has been to go straight to underwear and to put up with several weeks of wet clothing. Even for the children who were showing very few signs of readiness this has usually been successful as they come to make the link between wetting and the toilet and realise they dislike the feeling of wet clothes. Pull ups are no different to nappies for a child with no concept of underwear, they serve the same purpose as a nappy so don’t really help with toilet training at all.

Definitely potty training should be done when he shows signs of been ready, my asd child was 7...putting too much pressure will only cause too much upset for your child, definitely hold of until you feel he is ready .

Oh hell no. I bowed to pressure the first time with my autistic child when he was around the same age. He had started to use some words, show a tiny bit of understanding re toileting and for a few days the weeing at least seemed to kind of be going ok as long as I reminded him every half hour (so not really independent toileting tbh)

Then the stool withholding started. And I can honestly say it was the hardest but of parenting I've experienced so far. It was horrendous. And even though I'd gone into toileting as breezy and casual as possible with him he couldn't cope with it, hence the withholding.

OP you know your child. And this nursery sounds ridiculous, especially if they're meant to be SEN specialists

My daughter is 9 and still in nappies. She probably always will be. She has SLD and autism. She’s also non-verbal, extremely sensory-based, different in so many ways that comparisons to “normal development” are futile.

Toilet training either will or won’t happen for many children with additional needs, but it will happen in its own time. It’s pointless trying to push it when the children aren’t ready and I’m surprised and upset OP to hear that an SEN nursery takes this position.

Don’t let them bully you. It’s a tough enough journey and you need nurseries and schools to be on your side. You’re doing great sticking up for your DS. You are his mum and you know him better than anyone. Stay strong.