Toilet training

[reeohh91]

Anybody else got an Autistic boy that they’ve struggled to toilet train? My girl without additional needs was trained before she was 3, but my little boy is 5 and starting Year 1 next week. Lord knows I’ve tried, but I’m getting nowhere. I feel like such a failure 😩

he is under the continence team, but there’s just no progression. Everything they’ve suggested just haven’t worked 😔

Can be so difficult to toilet train an autistic child. Sensory needs including lack of awareness of body needs (interoception)
Constipation can also add to the difficulties.
This book was written for professionals but tips may help.

https://www.amazon.co.uk/Toilet-Training-Autism-Spectrum-Professionals/dp/184905603X/ref=mp_s_a_1_16?crid=JRT49W409P84&dib=eyJ2IjoiMSJ9.RV8KBi8Gm1MkRi7wQ05yl9byfV0sfzr6P5qzTkn024q4rD2Nl3_W685HaNgS6qxp0DJ4PW6Tdvqyqcs_eHJ9yMTzvduczFKrFhWIb3fiEGZjZktVNAFdqLOAEVjEF2PPNy_3GfKwrZUXxv4wnvXl60hRuujCHDaQBS5pjBgSbrdRyR-SoVBQPDM0Fn3pYS3uBZLYMf9RCtMbjC_looys7w.s0DVH5I4CGZmKWZBZrXF9S4o6Eo3zLnGAp9vFQOPZ7s&dib_tag=se&keywords=toilet+training+autism&qid=1756331054&sprefix=toilet+training+autism%2Caps%2C92&sr=8-16

You're not alone.

DS is 6 and has made progress in the last year.

He will stand up to do a wee, but he wont always tell us he needs a wee, and won't independently take himself to the toilet.

He will only do a wee if the toilet is within eye sight when he need to go, otherwise he will just wee in his pants.

We can't transition from pull ups though as he withholds his poo. He will only do a poo in a pull up, and when he does do a poo he's like a ninja, its so fast, there's no opportunity to get him into the bathroom.

Changing him in the bathroom to create associations hasn't worked. Emptying the poo into the toilet from his pull ups doesn't work. He will just not sit on a toilet seat at all, whether it's bare, padded, or has one of those ugly toilet seat covers on.

Annoyingly, because his classroom has young child accessible toilets literally right there where he can see them, he takes himself off for a wee most of the time, but that will change this week when he enters a new classroom, so it's been really hard to gather evidence for his DLA about his toileting needs, because it's entirely environmentally dependent and that classroom was clearly the right environment.

What helped us get him to wee in the toilet is categorically disgusting on every level, and I can't believe I'm about to put this in writing on the Internet and I'm not even name changing, but: his dad and I would draw a target in the toilet bowl with whiteboard pen and I would use a sports bottle of water and he would be in the bathroom while his dad and I would play who could wash the target off first. His dad was team yellow 🤢🤮, and I was team white, and every time I would lose on purpose.

For a few weeks he was so disinterested, but we did it anyway, and we would make a huge song and dance and act competitive and I would act gutted and his dad would be jumping with joy. After a few weeks he decided he wanted to squirt my sports bottle with me but I'd sabotage it and lose anyway, and a few weeks after that his dad stopped playing and I got him to join in and be team yellow 🤮🤢🤮🤢🤮🤢🤮🤢, but then he just carried on after that having a wee in the toilet whenever I took him in.

It's really important for my sanity that anybody reading this understands that before this we had tried absolutely everything and I'd already sat through 2 ERIC webinars one being special needs oriented, been under the HV team, been through the incontinence team, spent a fortune on various shapes and sizes of potty, tried praise, tried charts, had a bribery sweet jar stationed right outside the toilet, sat and modelled having a wee or a poo whilst narrating audibly for all in the house to hear "I'm going to the toilet to have a poo" "I'm sitting on the toilet to have a poo" "I am pooing on the toilet" "I have had a poo on the toilet and now I'm going to wipe my bum".

We didn't force it multiple times a day, maybe once or twice and some days we even skipped it because we were deflated and not getting anywhere but I think the relaxation on not pushing it is what helped his interest pique in the end.

@Jimmyneutronsforehead
Love your wee target strategy. Got to do whatever works. You can buy target balls that float in the water for this purpose.
You sound like wonderful parents. Very resourceful. Good luck with the new term.

We tried everything. We tried the balls, and the colour changing stickers, and blue food colouring to make it turn green when we do a wee which he was completely disinterested in, and in the end I was a bit sick of pulling things out that were covered in wee. The sharpie, aptly named the pee pen, luckily was only touched on the handle and not the part where it meets the bowl, so I could easily just throw it away afterwards.

I have really struggled to find any toilet training advice that works. I am confident that he can wee in a toilet and knows that toilets are where we go to wee. It's just the complete lack of ability to communicate or lack of sense of urgency he has.

We definitely had to get creative, and I am struggling for how we can get him to poo in a toilet. He will just not let his bum touch the seat at all.

It's an INSET day today, but I bet his new teacher is going to get a bit of a shock tomorrow.

Sounds like you have been really inventive. Don’t know if the book I mentioned upthread would have anything you’ve not tried. The NAS used to deliver toilet training seminars but don’t think they do now.
Has he had an OT SPD assessment?
Interoception might be an issue. School staff probably need to add a toilet symbol to his timetable regularly. Less stressful than going with the whole class.
Lots of children choose not to poo at school. Good luck.

Our OT doesn't do in person SPD assessments, they send you a sensory diet worksheet and a YouTube video. He definitely has interoceptive processing issues.

He's completely disengaged with pecs symbols and visual aids, I think he finds them too overwhelming.

He is under the SCI team though and they're always trying to come up with new and creative ways to get him to be able to communicate and engage and really I think it's just developmental and as long as we all keep doing what we are doing eventually something will click.

Hello my autistic 4 year old has started mainstream reception today. He is nearly 5, so quite old in the year, and he is not toilet trained. He is for wee, this was cracked just after his 4th birthday. He is not for poo, and will just go whatever is on his bum whether that is nappy, pants. It's stressful because if he's in a nappy too much he will just wee in it because he is clever and gets lazy 🙄 However the incontinence team says he must not come off the laxatives which means the poo is runny and an absolute nightmare if it happens in pants. So to school in a nappy he has gone - I can't risk him doing a runny poo in pants and it going all over the classroom and all the other children knowing.

So far in our one call with the bladder and bowel team they have focused on constipation - whilst he undoubtedly has had constipation it's probably more an interoception/autistic issue. He does have an ehpc. I just hope the school are kind to him 💔So you're not alone and we are following along behind you.

Not all OTs are qualified in sensory processing. Ideally a sensory diet would be bespoke as I’m sure you know. Not easy to get the input.
Have you seen the book The Out of Synch Child has Fun?
Glad you have a specialist team around you.

@Flop2023 Hope the first day was OK?

@24Dogcuddler He was only in for 2.5 hours (as are all the reception children) and didn't poo, so we assume it went ok. He isn't conversational to tell us 💔 Thank you for asking x

@Jimmyneutronsforehead if sitting on the toilet seat is an issue, have you tried a portable squatting toilet?

Thank you for sharing that @Jimmyneutronsforehead I am HOWLING. 😂

We also tried absolutely everything and if DD had been a boy would not have drawn the line (lol) at doing the same.

What worked in the end (or was the last thing we tried before she got the hang of it) was getting the Interoception Curriculum into her EHCP. That might also help for your DS @Flop2023?

@RavenLaw hi, although I've heard of interoception I've not heard of 'the interoception curriculum' what is it? The ehcp has only just been finalised so may be a long wait to make changes.

I even bought a she-wee, but after using it once, it just back filled and made a huge mess, I decided never again.

I can laugh at it looking back, but it was not my idea of a good Friday night when it was happening.

@Flop2023 it's a curriculum devised by Kelly Mahler who I think is in Australia, and it can be implemented by a suitably trained OT. It's made a huge difference for DD - not just in toileting but also feeling hot or cold, hungry, recognising when her emotions are getting out of control (to be fair that one's still a work in progress). She'll independently choose to take her jumper off or put it on without being prompted now for example, and is much better at knowing when she's thirsty - which has a good effect on staying dry because a child who doesn't drink enough won't experience the sensations of their bladder expanding properly, and if those sensations are muted anyway due to poor interoception then the two feed into each other.

There's an interoception facebook group - and a private discussion group because obviously you don't want to post your child's toileting problems anywhere public that isn't anonymous!

Sitting on the toilet is a big issue, but so is him being seen while he poos.

He's lightning fast as well when he does it, and he won't try and go on command, so if I said lets try and do a poo, it'd just get his heckles up, and he does withhold to the point he has constipation and then we're back on to laxatives. I don't think he'd even use a squatting toilet.

If someone asks him if he's doing a poo while he's doing a poo, that will also just get him to clam up for 48 hours until he's in pain with stomach ache. It's like any time he knows he can be perceived and it might be poo related, he just stops, and it takes us ages to get him comfortable doing it again.

When we spoke with ERIC, they said that because he's withholding and he will only go in a pull up, he will have to use a pull up.

We weren't able to get any advice on moving him on from pull ups.

@Flop2023 if the EHCP has only just been finalised and it doesn’t contain all the required support, you can appeal.