ASD and the toilet

[LittleMG]

please help me, to say I’m at my wits end would be an understatement.
I have a lovely, kind, articulate DS (5) who is honestly the most beautiful child inside and out. I obviously love him very much. I have never been able to potty train him for poo, wee has been fine since he was tiny. We’ve had constipation, withholding, everything. He will go through a period of good times and seems to be getting the hang of the toilet and then we’re back to square one.

He is really funny and easy to talk to and the school noticed straight away he is intelligent but performing really poorly. Along with the soiling his pants every day they sent him to their educational phycologist who has now said he has traits of ASD. No diagnosis just that they need to give more time, repeat and help him organise. They think this poo issue is to do with this. But I’m no nearer a solution, all they did was give me a ‘Social Story’ to read about using the toilet. We are under the incontinence nurse but just given laxatives to stop constipation and instructions to keep sitting on the toilet. Which we are doing.

He knows he shouldn’t be doing it but can’t tell me why he can’t stop. He just can’t articulate it.

Other kids and starting to notice at school, he struggles to make friends as it is even though he seems to make all the right moves. 🤷‍♀️
what can I do do to help him, where do I even go from here? Please if anyone has any advice I’d really like to hear it, because when I say I’ve tried everything (yes and Eric were not helpful) please believe me.
Thanks for reading it’s long. X

It's so hard.

What worked for one of my children

Lactose- can buy over the counter - that was a game changer as it makes things softer
Give him water in a water bottle you know how much they are drinking - they need to drink lots
Apple juice can help
Pears help
Banana was a big no no caused constipation

Do a food diary,
After food / dinner try to go the toilet - even if they don't go get into the routine of trying after food. A bath and trying also helps as things are more relaxed

Good luck

If ASD is suspected you should push for a referral now.

Is the constipation under control?
Has a physical cause been ruled out?

Has DS had a sensory OT assessment? For some, the difficulties stem from sensory differences.

What support is the school providing? Not just surrounding toileting, but more generally too. Does the school prompt DS to go to the toilet?

Thank you x I didn’t know whether to push for a referral or not? They say it’s mild? But it’s effecting him a lot!
The school have to give extra take up time, provide organisational resources to help him get through the tasks he’s asked to do like ‘now and next’ card for example. They prompt him a lot about the toilet and help him clean himself up. He had not had a OT sensory assessment but I think it is a sensory thing. He’s an anxious little boy and does worry a lot about change. Food and routines do appear ASD like eg lots of beige foods, HAS to have the Mario drinking cup, screaming when as asked to sit on the toilet.
The constipation is not really under control as even though he’s not constipated he’ll hold on for days until it’s really uncomfortable. Sorry I’m trying to streamline a lot of info so it’s not an essay! Thanks again

If ASD is suspected you should push for a referral. There’s no such thing as mild autism. In order to be diagnosed with ASD one must have difficulties that limit and impair everyday functioning. Something that limits and impairs everyday functioning isn’t mild.

Chase the continence service &/or your GP. The constipation needs dealing with otherwise it is setting DS up to fail with toilet training.

Does DS have an EHCP?