PDA toilet training - do I just go back into nappies?

[PDA]

My almost 4 year old was recently diagnosed with autism with a PDA profile. He’s been out of nappies for 15 months but not really toilet trained. He’s had times where things have improved (1-2 accidents a week) and I’ve thought we’re getting there, and then there will be a big regression, back to 5-6 accidents a day.

He is very intelligent, he’s taught himself to read and do simple maths. He has no language difficulties. He is 100% physically and cognitively ready to be toilet trained. I can only assume this is a sensory/demand avoidance issue. He is extremely resistant to being prompted to use the toilet most of the time. He never tells us he needs a wee or takes himself. He quite reliably poos on the toilet (self-initiated) and maybe has 1-2 poo accidents a month.

We’re currently 2-3 weeks into a big regression and after all this time I’m at my wits end. He’s essentially a non-toilet trained child who just happens to not be wearing nappies. After the 5th accident today I’ve lost it with him and shouted at him. Obviously that was not an okay thing to do and I feel terrible, it’s not my usual style at all. I’m usually very good at staying calm and am not a shouty mum. But I’m at the end of my tether.

I’ve contacted the HV service multiple times who have said there’s nothing they can do to help me, they don’t know who they can refer us to. So we’re on our own.

Do I just put him back in nappies, end the power struggles there, and give him 100% control over the timing on this? Presumably he won’t be a 30 year old man who chooses to wear a nappy because he’d prefer not to use the toilet? At some point peer pressure will kick in and he won’t want to be the only child in a nappy? I feel like he has to care and he just doesn’t care. He won’t even tell anyone when he has an accident, he just sits in wet/soiled clothing until someone else notices.

Would love to hear from other parents of PDA children to see how you handled it? Toileting is kind of the ultimate internal and external demand isn’t it? It seems like an insurmountable hurdle.

I have DS5 with autism and PDA who has also started to wet himself again recently. After three days of it I put him back in nappies. After just one day of nappies he was taking himself off to the toilet again.
This is definitely a nervous system fight or flight reaction you are seeing in your DS.
Save yourself all the stress, (I know there is alot) and just put him back in nappies until he's ready. I'm afraid we PDA parents just have to drop demands as and when it's needed.
All the best to you.

Thank you, I needed to hear from someone that this isn’t a crazy thing to do. Any family or friend I’ve asked (none of whom have any other experience with PDA) have said it’s not the right move. But I feel in my gut it is.

When we got up this morning I went to dress him in a nappy and he asked why. I said, “I’m not sure you’re ready to wear pants because you keep weeing in them, but that’s okay, you can wear a nappy until you’re ready to do your wees in the toilet”. Cue full refusal to put on the nappy - “I’m not a baby”. I said, “okay if you’re sure you’re ready to do your wees on the toilet then you can wear pants, but if you keep weeing in your pants then we’ll go back to a nappy”. It’s 2.45pm and we haven’t had any accidents so far today 🤞🏻 I’m not naive enough to think we’ve cracked it, but it’s a positive day on the accident front.

That's brilliant news 💚

Hi, I just wondered how you were getting on? I’m currently having issues with my 3.5 year old, I suspect he may be PDA. We’re experiencing exactly the same issues you describe and no one can help! It sounds like we’re just going to have to leave him to decide when he’s ready but so much judgement and pressure!

Hi ☺️ We’ve tried really hard to go very low demand across the board with our parenting, and also with toileting. We’ve kept him in pants and have been taking him every few hours but if he does have an accident we’ve been really casual and nonchalant and barely reacted. Since we became lower demand overall his behaviour and emotional regulation have improved a lot, and he’s also not had an accident now in 3 weeks 🤞🏻😬🙌🏻

Two things that helped us - online training with ERIC (free) on incontinence, and also online training with the PDA Society (approx £40) on PDA parenting.

Best of luck ☺️

Thanks so much for this, really helpful! Makes total sense, low demand seems to be the way to go for our DS especially in relation to this. Thanks for the advice on training - I’m going to do this as really want to demonstrate to his preschool that we’ve done everything we can when he starts in September as there is a lot of pressure for him to be trained.

Do you mind me asking how you got a diagnosis at a young age? Feel like no one is taking me seriously and keep being told ‘he’ll grow out of it’ or ‘it’s just boys’.

@Corilee2806 If your child is under 5, get the health visiting team to observe them at home and make a referral. No one believed my son had PDA until I nagged them to do this. Had a diagnosis of Autism and PDA within weeks.

That’s amazing you got it so quickly! Our health visitor has been good and came to see us but taking a while to sort referral as his nursery ‘don’t see it’ - not sure what will happen when it actually gets sent and if it will be accepted. He’s 3.5 but coming under so much pressure from school to explain why nothing is working in regard to toilet training.

This is the trouble in a formal educational setting. My sons are home educated, so I didn't have a school fannying about saying 'he's fine'. I had to insist on an observation from the HV. Good luck. Hard isn't it?

Thank you. It really is. Really struggling to get support at the moment and questioning all our decisions!

We paid privately for an autism assessment with a provider that would assess for a PDA profile also. No one believed us either - as soon as I read the description of PDA I 100% knew that was what it was, but because he’s social, makes eye contact, has good language etc. everyone was skeptical. I think they still are to be honest but I’m tuning it out.

In our area NHS waiting lists for assessment are 2-3 years long and they won’t look at PDA as part of the assessment, I felt like his autism would be missed unless they saw it through a PDA lens and I wasn’t willing to risk it.

good on you for tuning it out - you definitely need to have a thick skin. Waiting lists similar here so think we’ll prepare to go private at some point before he starts school if things don’t improve.