My 5yr old has Down Syndrome and isn’t fully toilet trained. She communicates with some single words, signs and gestures. In general she does better at home then when out / school / play group. At home she indicated she needs to go to the toilet but regularly she doesn’t, so she’s inconsistent. Sometimes she smears with poo as well.
At home she goes to the toilet at set times and on observation, I take a book / sing / or use the toilet app for her to take the time at the toilet. I praise her successes but do not make a problem of an accident and approach it neutrally. My girl also has a fear for the toilet and a toilet insert, grips, and a step helps.
She uses a nappy in the night, pull ups at school and when out and about and at home during the day undies.
We’ve had Occupational therapy / Physio therapy / Behaviour therapy and currently still use OT.

Some children (autistic and those who aren’t) decide to try to “hang on” while they are playing then suddenly can’t hang on any more. It could happen if they are concentrating on something in class too. I know of a young boy who suddenly had and still has no control in bowel movement and managing to get to the toilet in time. He has no other issues.

I hope you found the answers that you were looking for now

Maybe you should look at a new OP. Not really sure, it is hard to tell what is going on in their head.

I hope you managed to find the answers you need.

I wish I could help but I could only recommend getting second opinions from the professionals or perhaps a behavioural rewards chart.

Have u gone through the autism angels… They MIght give u a different avenue to look up

I hope you managed to find the answers you were after. I would join a support group for parents of autistic children. It would be great to have the support of people going through the same thing. Put him in pull ups when you go out.

a second opinion for an OT?

I have the same problem with my son. He can be really good but has trouble wiping himself adequately to the point that his jocks are dirty and he is smelly. I’m worried the other kids at school will tease him. He has a Continence Care plan at school so that he can get help from the SSO. We are also about to go to an Occupational Therapist and Psychologist who specialise in this area. Visuals and apps haven’t worked for us unfortunately. I’m more stressed about this than my son is. Our school is being as helpful as they can but picking him up to find out he is dirty and smelly is stressful.

My son is 5 years as well. Also has Autism (Severe) & Non verbal. Currently in nappies!
I think something is going on in his mind when it comes to toileting as he comes to me when he’s done #2 as if to see change my nappie. And he’s fascinated with the ipad toileting app we have on his ipad.
Do you have an ipad for your son?? Would maybe some visuals help? Or a App. I can recommend a App that my son uses. He isnt near at the stage to be toileting. But we are letting him explore as much as possible.. We find that if you force the issue , that they actually can become quite stressed and anxious and therefore might regress..
Hopefully by now you have gotten some help with the toileting.
goodluck..

I always recommend going to the experts – try the http://www.autismspectrum.org.au site or find other support groups, I’m sure they will also have heaps of ideas for you. Best of luck.

we are going through the same thing with our 6 year old with delayed development. Turns out he had desensitised and does not know when he needs to go to the toilet. We are working with school on this. He is reminded to go to the toilet first thing, then 20 mins after he eats each time. He has to sit there quietly for at least 2 minutes. He had been soiling himself several times a day, up to 7 times a day. This is working for us so far.

I think it depends if he is uncomfortable with the matter. Is he noticing that it is there or does he get uncomfortable with the soil o his underpants. It is more about routine to see if he goes toilet in the early morning or after her has had breakfast. Try taking him so at the same time so it is routine.

Have you joined any groups for mums with autistic children and if so can you ask them? I am sure there are some on the Internet

Autism as far as I understand it having worked with children revolves around consistency and reward – find out the things that bring joy through observation and start linking those joyful rewards to successful times on the toilet.

I really feel for you this must be hard.
All I can suggest is maybe try special with buzz light year or something similar.
And tell him they are very special and they give you special powers. And the make you go to the toilet when you need poos.
But only very special boys can wear them.. May be a different approach. Maybe thinking he has special powers may convince him he does.. sorry I wasn’t more help.
I guess you have to look at things differently .

I would be talking to a paediatrician to see what they say

I have the same problem. I am pulling my hair out.

I guess you should speak to the OT – maybe its an attention or cry for help? just a thought – sorry I am not much help