To expect my 9yo to be toilet trained?

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Genuinely don’t know if I am being unreasonable.
He’s severely autistic, pda, sensory issues.
Never been potty trained for number twos.
Has had blood tests and seen by doctors, consultants, paediatrics. All have said there’s no medical reason why he can’t be toilet trained.
He withholds for weeks, gets put on laxatives and the cycle continues.
The doctors and myself think he’s choosing to soil himself.
When asked he will say he doesn’t want to poo.
He doesn’t understand that he has to and it always comes out eventually.
Have tried rewards, decorating the bathroom to make it inviting, letting him have the iPad if he sits on the toilet. Tried the opposite where bathroom is boring and he has to sit on toilet with no distractions every hour and a million other things the doctors have told me to try.
If he did it in his pull up once a day I’d feel better about it, I could clean him up and get on with my day but because of the withholding/laxative cycle he just leaks constantly.
No school input as he was excluded at 5yo and have applied to every school mainstream and special in two counties with no luck.
If you’ve gotten this far please help me. And aibu to think he should be toilet trained or should I give up?

I have no advice except that AIBU probably isn't the best place for this. You could ask MN to move it to a more appropriate section.

I think you should get this moved to the SN section.

There isn't an easy answer either way

If you were to stop trying, and just let him do it in his pads, do you think he might relax and stop withholding? If you gave it say 6 months?
Is he able to take his pads down himself and wipe himself when he has a wee, could you show him how to do it for poo?

Are you getting any taprespite if he's not been in formal education since 5?

I would post this on the SEN board - there are some amazing posters there, who might have some good ideas for possible avenues of support. At the moment, it sounds like you are not getting the support you need. I have a friend whose daughter had similar issues (although less severe), and was incontinent for a long time (at a slightly younger age). She would withold at school, and this caused (and still causes) huge digestive issues. It was very difficult for everyone - particularly her, as she was basically in a nappy at school, and it was obvious when she had soiled herself.

I would suspect that he isn't choosing to do this, but I really think that he (and you) need more specialist help with this. Although I know how thinly resources are currently spread - after all, it sounds like the school system has massively let you down (again, post this on the SEN board - they are very hot on the legalities of access to education).

I think that to say he is doing it deliberately may be putting a level of thought into it that he isn’t actually capable of.

Just because there is no physical reason doesn’t mean it’s a choice he is making. It’s all much more complex than that when autism and other things are concerned.

I think the best thing you can do is probably relax and try to remove that extra pressure in him

Have posted on the sen boards before and get very few/no responses. I’ve begged sendiass and ipsea for help over the years and although I’m sure people have the best intentions telling me it’s illegal for him to be out of school and the local authority needs to give him an education, they don’t see that I’m on the phone every day being told they can’t help him and they don’t have to do that.
Have recently been given a few hours tuition a week which gives me a much needed break and local authority are now looking at private schools 1-2 hours away which obviously has its own problems. If he soils himself a mile from home will he have to sit in it until he gets to school?
I’ve been going doctors since he was 4 about it and just get fobbed off. I feel he’s being massively let down but I don’t know what else I can do.

Is there any chance he has a medical condition? DS1, who's neurotypical, was incontinent of faeces until he was 4. Local hospital dealt with this using laxatives and enemas. We weren't getting anywhere.

I got him referred to a teaching hospital and they worked out he has a variant of Hirschsprung's disease. Basically some of the nerves in the very bottom of his bowel were missing, which means he just wasn't getting the urge to empty his bowels. Full blown Hirschsprung's disease is quite obvious. A variant is more easily overlooked. And it's a neurological issue.

The doctor was amazing. He explained all this to a young child and told him that if he wanted to poo normally he would have to learn to "listen" to his bowel, to hear those much fainter than normal impulses. They would be hard to notice but the doctor promised it would get easier with practice.

DS1 learned to deal with it. He tends to leave several days between bowel movements but when he's in the loo he's there for a long time. It's totally resolved.

Worth looking into perhaps?

Have you had any contact with the continence team or learning disability team (if he has a learning disability)?

I feel for you op. I had this with my 5yo DS for about 18 months. It's so hard! Luckily his school were very understanding and worked with me to help him.
In the end I had him on the highest dose of laxatives, this was very messy but when he soiled we didn't react. Just said next time do you think you can make it to the toilet? I gradually reduced the dose once he started going to the toilet. He's now on 1 sachet a day. We also refer to it as his poo medicine which makes his poo soft so it's easier to push out.
We bought a few books, there's a few on amazon. I think one called Liam goes poo on the toilet, where's the poo? And everyone poos. There's also an app called poo goes to Poo land which he really liked.
We routinely put him on the toilet for around 15 minutes at a time. And with school we had a book and wrote down everything he ate and every wee/poo/accident he had and we were able to figure out he always had an accident around lunchtime so we knew to sit him on the toilet at that time.
Consistency is key. As he is autistic does he respond well to routine? Maybe a routine chart will help so he knows when it's time to sit on the toilet.
My DS is being assessed for autism (I'm very sure he is) and we found just keeping things consistent really helped him. Also when he did poo on the toilet we didn't make too big of a thing about it because that seemed to put more pressure on him to do it again. We just sort of said well done you did a poo on the toilet! Then carried on with our day.
I truly believe that it's all down to the child as well, from all the research I did on this the majority of parents said that one day the child just decided to go to the toilet! And that's what happened with my DS!
I hope some of that helps!

OP, my DS with ASD was very similar. He has sensory issues, under sensitive to most things, therefore likes a lot of movement etc. He just couldn’t tell he needed the toilet for poo and it became a vicious circle. The more I got upset about it, the more he tried to hide it when he soiled.

In the end, I just taught him to deal with accidents himself with no fuss, reward nor punishment. We had a bucket in the bathroom (like for cloth nappies) and easy access to wipes and clean clothes. He eventually managed to have a time of day that was fairly regular for pooing which was while he was at home in the afternoon evening so less school accidents. For school I gave him wipes, clean pants and nappy bags all in a drawstring PE type bag.

He is now 18 and rarely has an accident. It’s been a long, long process though. Sorry not to be more helpful.

I very much doubt he's actively choosing not to be toilet trained with the complex SN you describe OP. I thought this was quite common on the severe end of the ASD spectrum along with digestive issues. DS 2 is on the milder end and has always had issues with his digestive system although he has a very varied diet with lots of fruit/veg as he eats everything and luckily he hasn't got sensory issues around food.

What is his diet like? Can it be improved by hidden supplements to make him go?

Do you have a local ASD group who can offer support and direct you to local services?

Have you tried Eric helpline? I think it's staffed by nurses.
Asked for referral to continence team?

I don’t have any advice but I just wanted to say that I am so sorry that you find yourself in this situation. It must be very hard on you emotionally as I can see you have tried valiantly to find a solution.

I hope it gets resolved as soon as possible for you x

Oh, and ERIC were useless. They just don’t specialise in those with SN.

Have they tested if he is hypermobility? It’s not always obvious. My daughter was hypermobility and did not have the muscle strength to push out stool. Plus after all that constipation his bowel will be more likely have stretched so I wonder if he has less feeling. My doctor describes it as the bowel being more the size of a waiting room rather than a passage way. My daughter had similar problems up until about six. Are you keeping him on the movicol all the time? If not, he needs to be on it until his bowel can shrink to a passage way. My daughter soiled herself everyday until about six when I tried an alternative therapy called health kinesiology, weaned her off movicol and have not had any more issues.

Thank you everyone, it’s nice to know I’m not on my own and I’ll ask for referral to continence team.
That’s interesting frumpty, I was told when he was a baby he was autistic and when we got the official diagnosis we were just sent on our way with no information or support. No local groups unfortunately, consultant is trying to get autism outreach involved and trying to find support for us, he’s the first person to actually try to help us!
Ds won’t eat meat, fish, eggs, loves fruit and veg and has a multi vitamin. Sounds healthy but sometimes I’d love to be able to just throw something in the oven for him to have.

Also at risk of sounding patronising (which I don't mean to be!) have you tried letting him see someone pooing on the toilet so he sees it's not (sensorily) scary. We had to do this with NT DS3 who was scared of it and would hold it and poop in pants up to school age. Slightly embarrassing but we all do it. Maybe he needs visual training at a similar time each day after meals? Lots of 'Mummy poos' ahh lovely, that's better, contented sighs. May take a while but might point him in the right direction.

Have you looked into getting ABA therapy to help him? I work in an ABA school and we often help families with toilet training (can’t help though as I’ve not done it myself). One of our 10 year olds just finished toilet training (both urine and bowel movements) over 9 weeks in time for the school holidays. He has severe ASD with a very low development age (under 2) and is non-verbal.

You need to find some online forums for parents of children with ASD. ASD Friendly was a life saver for me but I'm not sure how active it is now.

Does his EHCP detail his continence issues and make provision for changing him? School staff should be trained to deal with this. He cannot be left waiting for you to come into school to do it.

Would you be prepared to send him to a weekly residential school placement? Try to keep an open mind about it and look at every option within a reasonable twice weekly travelling distance. Be very picky and ask a lot of questions and you may find somewhere that makes a huge difference to him.

A PP has suggested ABA. There's a lot of controversy around it and some autistic adults feel that it has caused them significant harm. Make sure you research any techniques you consider very carefully.

Good luck