Stool withholding 6 year old - what else can we do?

Hi everyone,

I’m new here and looking for some advice - and mostly looking for support and to be seen and heard by people who understand. It’s the first time I’ve signed up to something like this, but I just get so lonely sometimes with the worry of it all. I feel like we’re on our own with this problem. 

Stool withholding is such an issue right now for my 6 year old ASD son. It gets better, then it regresses. He will hold it through fear of it hurting and from not wanting to use the toilet. The fact it pulls him away from what he wants to do also contributes and he just sees passing a stool as something he hates and therefore doesn’t want to do. He holds and holds, until he’s very backed up, and then eventually, days, over a week later, after much calm gentle coaxing, lots of fluids, lots of tantrums and tears, he goes, and he’s so relieved and happy. Then it begins again. The doctor prescribed lactolose which he takes twice per day but I don’t feel it makes much difference. What works is talking to him, coaxing, support, rewards… but although it works short term, it doesn’t seem to break the back of the association. My son is very communicative and intelligent and we even talk at length about it, about how the body works, why he needs to go, but nothing has made much difference. 

It disrupts his school week, and he misses out on things sometimes because he needs the toilet. He’s been referred for further help but they just seem to refer me to the ERIC website and tell me it’ll get better once the  constipation is cured but I just seem to be stuck in a cycle. 

I also can’t try movicol as he won’t drink anything that isn’t water, he has quite a restricted diet so fibre can be an issue too.

does anyone have any other tips? Or at least, just understand

I feel like i’m failing.