What age was your child with ASD toilet trained?

[Lefmry]

My son is 5.5 and honestly he’s nowhere near being toilet trained at all. He’s never communicated to us that he needs the toilet. Around the age of 3-4 he did used to tell us when he had pooed and needed changing but that stopped and never returned.

He’s quite severely autistic, he does speak but not really communicative. He understands better each year but I already know there’s no point trying and pushing him as he really does not understand the concept of doing wees and poos on the toilet at all.

He recently stool withheld which hasn’t helped at all, sometimes he went 18 days without doing a poo, it was horrific. He was on medication from the doctors for a good year but in recent times, maybe 3 months, he does a poo on the toilet once a day. Again he won’t tell us he needs it, we put him on the toilet at the same time each day after tea to change him in to his pyjamas, brush his teeth, wash his hands and face etc and he knows this is when he sits on the toilet for a while and poos.

Anyway, I’m just asking when people in similar situations to my sons had managed to toilet train their child with autism? If so, any tips?

My son is severely autistic and adhd, non verbal. He understands now but has limited interest in other people or pleasing others (this is difficult when trying to
potty train).

At the time he wasn't ready but it was really important to me to potty train as he was starting school. Think because he's non verbal I wanted to give him one skill! If I had waited for him to be ready it would never of happened. Especially as it was hard to break something that he knew - nappies.

We started at 4.5 years. We used ABA and had a structure to do it. It was all based on time. The week before we started we did a
chart and worked out how many times he wee's and when - eg once in the morning, lots after lunch etc. Chocolate buttons initially for sitting on toilet, then for weeing and poo. Then we moved onto biscuit if dry in the day. Now nothing!

Potty training took months and we still have occasional poo accident at school now (8 years). The first 3 months were horrible but we never stopped. Pants only and straight to the toilet. He's still in nighttime nappies though. He doesn't have a routine now, he takes himself now. Even tries wipe his bum...

With poo holding, my son only does it when he's unwell. We give medication but not as bad as 18 days! Lots of smoothies but because my son is hyper it helps his digestion.

I'm sure you will be able to potty train your son as he can communicate and understands. But it takes a long time and you will need support! Just don't stop!! Good luck

Following.. in a similar situ with 5yo DD. Feels like she is miles off but we would really love to make progress here. @user1984455 kudos to you but wow that sounds hard... there are so many daily challenges already that I'm not sure I could face it yet. But worried waiting longer just makes it less and less likely.

As a parent you have to be ready to start potty training with asd. The child may not be, my son wasn't. I was so determined and once you start you have to keep going with it. About 3 weeks in I wondered if we needed to stop but I didn't. My son is completely potty trained in the day despite being non verbal.

I found pants and a structure so important. I knew roughly when he needed to go - as soon as he got up. 2 hours later etc. I would put him on the toilet for 10 minutes. If he didn't do anything, 1 hour later again for 10 minutes. Then 30 minutes. Then 15 minutes later. If he had accidents I would take him to the toilet. I used the same words every time - toilet wee poo. So didn't say other things like loo pee etc. I kept it simple. I did have pecs card but used language more. Chocolate buttons as rewards. It took a lot of energy but he got it after 6-8 weeks. Reliable after 3 months. Now years later he's so good; takes himself, holds it when out and go when I can 'we are going out go for a wee'. Some occasional poo accidents but not many now. It is possible and I'm sure you're children will surprise you!

I sometimes shorten the times - 1.30 hour if he had a lot to drink or was having accidents before the 2 hour mark. But I just watched for
signs and knew my child. I had do some preparation beforehand. I did a chart to work out when he was wet the week before and did see patterns.

@user1984455 were you with him for the full time? Not in daycare or similar? I think it would be hard to take such an intensive approach when she’s in daycare 9-3
every day. But you’ve got me thinking about it!

When I potty trained him it was Easter! So we had those 4 days and kept him at home for another day (went to the park after a wee). On day 5 we went out for longer. The following week he went back to preschool - they continued it. He was 4.5 years old but he was delayed a school year so started when he was 5.

Another thing I would recommend is pants! When they go bottomless they is a chance they don't feel wet if they wee straight done. They need the accidents to realise what's going on. So pants help them feel wet. Nappies are so good now, them don't have the feelings of wet and dry.

@user1984455 Thank you for all of your wonderful advice, you’ve definitely made me feel less despaired over it all and given me hope that it’s possible. I think I’m going to get my partner to help me over the Christmas holidays with it later in the year. I have a 7 week old atm and he’s in school 9-3 so it feels a little impossible but do like your idea of doing it when he’s off school.

Thanks for starting the thread- it’s nice to know we’re not the only ones and to
see some success stories! DS is 5.5 (asd) and still wearing pull ups. We tried potty training when he was 3.5 and after months of scrubbing poo from pants we went back to pull ups. He’s better now but it’s entirely routine led- we take him to the toilet shortly after meals and he sits for about 20 min. When he’s regular it works well but he still
won’t self initiate or tell us when he needs to go. We’re focusing on the poos for now so we can try pants again. He often wees in the pull up though so I’m not sure how successful that will be. I just wish he cared more- he won’t even tell us when he’s had accident.

Poo is harder when potty training. I have 3 kids (asd son was my first) and poo on the toilet is so much harder then learning to wee there. My son never 'told me' so he was on a schedule. It helped us get started. He never was bothered when he had accidents either. When he had a wee accident I used to say - look your weeing. I pointed it out to him everytime. With poo accidents I took him to the toilet and emptied the poo into the toilet to show him where it went. I brought cheap pants and just throw some away.

You are both doing so well and it will happen one day! You just have to know 'typical' advice (books, HV) doesn't work. I took over potty training and he learnt it from me. He learnt the feelings and the routine. It does happen. My son has significant learning difficulties but it was important to me to do it for him. He has enough problems to deal with in life, I didn't want having his nappy changed to be one of them! Plus at the time I was struggling to find big enough nappies. It's better now with sizes etc.

Do it when you're ready and have some faith!

If DS isn’t already under them, some find the continence service helpful.

Some find ERIC helpful too. They have a chart you can use before starting to record times of drinks, wet/dirty nappies/pull ups etc. to spot patterns.

Has DS had a sensory OT assessment?

So glad I've seen this thread. Mine is also 5.5 and we are struggling as well. I think he knows what he needs to do but he's PDA and refuses. I can see alot of anxiety there about doing the thing and so he holds it in. Rewards are having less of an effect now. I feel like I've failed as a parent. Luckily his teachers are very good about it all.

Mine is 6 and he is so ready. We did have a try earlier this year but it fell to pieces because a bereavement in the family disrupted everything.

I know he can control where / when he goes but I can’t get him to wee in the toilet. Even if I open the lid for him he closes it again. Stuck.

@SachiLars would DS use a paediatric commode? Or for urine, a boy’s urinal?

SachiLars - is he standing to wee or sitting? My son only wees sitting and couldn't do it if he stood. Or does he want to stand? Could you encourage him to wee into the toilet with steps or over a potty? It's so hard to break the habit of nappies. We just picked a day and stopped using them. Completely brutal but for us it had to be done that way. My son had plenty of accidents initially, the early days our aims was 1 wee into the potty each day. Have faith and it will happen!

He is happy to wee in the shower, or (and this sounds a bit mad) climb somewhere eg back of sofa and do a big arc of wee.

Sometimes he pulls his pull up down and then back up as if he were using a toilet.

We did go nappy free but couldn’t manage to connect the wee with the toilet routine.

I would suggest trying to work on building Interoception Awareness before attempting to toilet train, in order to give the best chance of success. Interoceptive Awareness is really tricky for ASD kids (mine struggle massively) and the feelings of bowel and bladder are the most subtle of interoception signals and hardest to learn. Having a strong basis of Interoceptive Awareness should really help. Check out Kelly Mahler's website and Social Media for more information.

Dd1, the most complex and non-conversational of my autistic children was trained at 3 years and 6 months. Dd3 was 3 years, 3 months and dd4, who is the most academic one trained at 4 years, 4 months. She did do it at 2 initially but then started holding her wees in. She’s about to turn 5 and is only just becoming dry at night time.