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Toilet Training

NAS78712

Sorry in advance for long post.

Our 5 1/2 year old is currently going through umbrella pathway for a diagnosis but it is general consensus that she has ASD. She had delayed speech but is now fully verbal. We have had ongoing issues with toilet training. She has never fully "got it" with regular accident (even on "dry" days, she still has wet patches). She knows what the toilet is for and will often know to go if she is not wearing any sort of underwear (e.g. when wearing a nightie). However, as soon as she is wearing pants, it seems she completely ignores the cues.

Even when she does have an accident, she doesn't tell anyone and just carries on with her day but when you ask her whether she is wet, she will say no. However, she knows when she is going because she will crouch down when she feels it coming. When we ask whether she needs the toilet, she says "no" despite the fact she then proceeds to wet herself. 

We have been back to the GP numerous times and they have just said "oh it's quite normal. She'll get it in the end but she's obviously just too distracted to notice that she needs to go" but this isn't the case as she knows when she needs to go as displayed by the change in body language and facial expression when she is about to go. 

We did wonder whether it was linked to constipation as she often tries to hold in a number 2 with all her might but, again, the GP dismissed this despite evidence to the contrary. When she is aware, it often feels like it rushes on her so wonder whether it could be overactive bladder but, again, this was dismissed. 

When we ask why she doesn't go to the toilet, she either says "I don't know" or "stop talking about it". So we don't know what's happening and we are struggling as she comes home from school absolutely soaked but because she won't tell anyone, teachers don't know. We have tried a toilet reminder watch but she refuses to go when it buzzes. 

We have tried rewards but, again, little impact. I have read the guidance on here and followed it as much as possible but, again, little impact. We try and remain calm but often get frustrated which might explain her reluctance to let anyone know that she is wet which obviously adds to the guilt. 

Really struggling and as she gets older, other children will obviously become more aware of the difference etc. Just wondering whether anyone else has any similar experiences and any strategies? 

Thanks. 

  • in reply to NAS78712

    Thank you so much for replying, I really appreciate it. I’m sorry this is still a struggle for your daughter but the improvements are positive! 
    The interoception is interesting - I often wonder if he genuinely doesn’t realise he needed a number 2 until it’s too late and it’s coming out already. I also think there’s a possibility that autistic burnout plays into it all when he’s tired at the end of the day. We also struggle with medicines - even when they taste good he just refuses to take it. 
    Again, thank you so much for coming back to me. 

  • in reply to FrancesD

    Hi, it has improved over time (albeit it has been a mighty struggle at times) but we still get regular accidents (both daytime and night time). We have also had regular UTIs which have seemingly been caused by a combination of lack of water intake and then not wiping properly after toileting.

    We have come to identify the signs of a UTI early and our GP has been brilliant at prescribing Trimethoprim (as well as the 111 service actually when it's happened on a weekend) which clears the UTI up quickly. Thankfully she has become better at taking this as this was a real battle initially (understandably so as its gross!)

    A lot of it is down to interoception issues and she often suffers from urge incontinence which was something we suggested to the doctor in the first place but were dismissed (a source of annoyance)

    We have persevered with the toilet alarm watch and this seems to have had a positive impact for the most part when she acknowledges it. This is helpful when at school and, up until this year, the teachers have been really supportive. We have had to escalate it to the SENDCO this year as the current teacher wasn't supporting the toileting needs effectively. 

    The real improvement has come when she does have accidents, she will recognise and go and change herself. This has come with time and encouragement. 

    Number 2s are still a challenge and she will hold it in rather than take herself off. We just have to periodically send her to the toilet to try if it's  been a while since her last one or if there's signs of holding it in (skidmarks etc.). She has become better at doing this when requested rather than arguing but not all the time.

    Not sure if this helps at all!

  • Hi there, I appreciate this post was written a long time ago now but it resonates hugely as I could have written this myself about my son and number twos. I wondered if you might be willing to let me know how things are going for you now, if you made any progress and what helped? With very best wishes.

  • IT CAN TAKE CHILDREN UNTIL THEY HIT PUBERTY TO BE FULLY TOILET TRAINED . MOST CHILDREN WITHOUT AUTISM HAVE SIMILAR ISSUES. 

    autism and sensory processing is often co-morbid. She may not be get the instinctual sensation to go. She may be getting too distracted or fixated to go and use the bathroom.

    Like the doctor said, she will get their, you just have to be patient and keep assisting her. Also scheduling toilet with reminders could be stressing her out and adding additional stress and cause demand avoidance if your not doing it with her leading the schedule and you fitting it around your and others schedule, you need to find the time when she often soils herself and plan a toilet break five minutes before that time. 

    Certain additives added to chicken nuggets and dippers can cause digestive issues which can lead to child with sensitivities confusing bowel/stomach discomfort and when they need to relocate themselves. It may be the reason she soiling herself. Unable to distinguish between pain and discomfort and the need to use the toilet.