Toilet Training

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. 

Parents
  • 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.

Reply
  • 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.

Children
  • 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!