8 year old not toilet trained, told to not try anymore ?

[SoDoNothingNow]

8 y old ds (AuDhd) is not toilet trained. He is very clever and totally understands the process and the expectation but will not do it.

Over the years we’ve tried everything since age 3. He has made himself seriously ill on multiple occasions due to it (hurts himself, screams till he vomits or hyperventilating till he passes out, fights and injures himself and destroys things / hurts others)

We’ve seen the GP, HV, school nurse and OT, contacted ERIC for advice and nothing works.

He’s not receptive to bribery or awards charts, doesn’t care if anyone makes fun of him and won’t go near a toilet at all ever.
When we have tried to remove pull ups recently he became so severely distressed and we were advised by his psychologist to now just stop. Do nothing. Change them and say nothing don’t refer to it at all, no expectations nothing as they feel he will at some point in the next year just decide he will do it and they are talking about demand avoidance.

Has anyone else been through this ? It feels wrong to just do nothing now ?

I’d follow the advice for now. Secondary school might be the prompt he needs.
Did he used to use a potty? Has he always had an aversion to toilets? Any idea if germ related? Sharing facilities etc.
Have you considered a commode at home?

How does he manage at school? Can he change and clean himself?

Won’t even look at a potty used to scream and scream. At school he holds on if he can but if he needs changing he is taken to the welfare area and they allow him to change in there as he can do that himself (never soils at school)

This must be so hard but if I were you I would absolutely trust the professionals here. If you can remove all pressure, just shrug and move on, there's a good chance he'll just do it when he feels like it. But you have to play the game 100% for it to work. I haven't been in your situation but I've dealt with demand avoidance and you have to be clever about it ime.

This is not a normal situation, I’d be following the psychologist’s advice.

I'd stick to the advice op, it might just work.
can he / will he change the pull ups himself? is he in a mainstream or special school?

You need to follow the professional advice. If you won't, you must at least be honest with his psychologist so they understand your son's situation.

Mainstream. He will change himself (but not in or near the toilets as gets stressed) he usually tries to hold on , he’s strangely unbothered by anyone else knowing and not embarrassed ? If he needed help school have said they would help and we signed the consent for it.

I just feel exhausted it’s been years of constant trying. It’s like he’s not receptive in any way to the idea of actually doing it. I’ll follow the advice but it feels so odd after so long of the aim being to get him trained. We’ve been told he will likely just decide overnight some point that he will use the toilet but to expect him to then decide that another skill or expectation will be dropped, and not to react to that.

This sounds really tough. If you feel you've tried everything, I would follow the psychologists advice now.It definitely sounds like demand avoidance is a lot to do with it.

I think following the advice might just give you a bit of relief for a while? It must be bloody exhausting trying to potty train for that long.

Does he have a PDA diagnosis?

Completely agree. Stop everything. Give up on it. No expectations at all. If it’s demand avoidance he’ll only start doing it when you well and truly dont want it to happen.

Please dont feel bad about this. Your son has higher needs than you may have realised and it’s ok to do this.

I get that it feels counter intuitive to stop, but trying isn't working, you're emotionally exhausted, he's fighting against you because that's what he is doing, and you're not achieving anything positive.

take the advice. ignore anyone who judges you or him. encourage his independence in changing himself and just see what comes next x

Wow he's a lot like my ( undoubtedly but as yet undiagnosed) autistic 9 year old daughter. We also were advised to " back off" by her therapist and she now uses the toilet at school although not at home or out at any other locations. Slow slow progress but progress nonetheless. My advice would be to listen to the psychologist. My daughter's therapist believes she has demand avoidance, possibly PDA ( we have food and behavioural issues too) but she's very intelligent. I kind of want to be your friend as I've never met anyone else in this situation and it's been a lonely lonely road! Feel free to message me. If I get any more expertise/ advice I will pass it on x

You must be exhausted after trying for 5 years. I'd accept the advice and relax for a while. If he changes his own pull up and cleans himself up at least you have not got to do that. He'll probably go to the toilet when he feels lik it in his time.

I agree with others here and I also have ND children. It’s possibly the trying to make it happen that is causing the refusal. Trust that he’ll do it when he’s ready and in his own way. But I do understand how you feel. It can be very difficult to let go and accept some things

I feel your pain and frustration. My autistic son was wee toilet trained at about the age 7. He wasn't pooed trained. He had many an accident at school. He was under camh and investigated at gosh. He had many tests and exams. I felt like the bad parent who couldn't be bothered.
The breakthrough was that gosh found that his colon was too long. As it took from eating something to it too pass was about 10 days.
He had a ACE fitted and with medication inserted directly to his bowel really helped.
It's a long road. I wish you luck

Sounds like a fear similar to those with fear of spiders, driving etc if he won’t go anywhere near it. Could be the avoidance mentioned above but seems more extreme so maybe a route of seeing someone to help him with this fear if that makes sense rather than waiting

If he changes his own pullups then he's already taking most of the burden stemming from his toilet refusal, so let him continue as he is.

All sorts of aspects of using a toilet aren't very nice in sensory terms, like the cold seat, the flush noise, and the risk of splashback. Being autistic, articulating that will be hard or even impossible. As he gets older, he might find those sensations easier to tolerate.

Consider also that he might cope with using a portable urinal as a means of urinating at home.

Hi OP,

I’m a Psychologist and specialise in neurodiversity. I completely agree it needs to stop, I’m surprised based on how distressing it sounds for him that you haven’t been told to do that before now.

If he is sensitive to demands the only thing you can do is completely loosen the demands, and over time he will do it when he is ready and when he feels motivated himself (rather than just doing what everyone else wants him to do). Toileting is very difficult because it can turn into a battle for power, and your child will always win, you can’t control what they do around the toileting, and trying to do that for a demand avoident child can turn it into a bigger battle for control to the point where it can lead to serious toileting problems and be traumatic for the child. The suggestion to stop is to try and stop that from becoming more embedded. I suppose the other thing is that some ND children simply do not have the level of interoceptive feedback to develop those skills like others might do, even if they intellectually know what to do, so learning to use the toilet is just really, really hard and can take a really long time. However you do choose to approach it, I would be asking yourself why it feels difficult to you to stop even though you know what you were doing wasn’t working. And whatever you do decide to do, I would definitely avoid saying anything that might indicate he should be embarrassed or ashamed as that often escalates things.

I know how difficult it is to feel like you're doing nothing but that is not the case. You've done everything humanly possible. You need to take the pressure off him and yourselves. To keep pushing him at this time will just traumatise him and you. You're not doing nothing - you're making a conscious decision to take a break from this now and let him have some breathing space. In my experience with my ASD son, sometimes just taking the pressure off can give him time to process and come to a decision himself.

In case it hasn't been said, you're doing a great job as a mum - it is hard and unless you've been there, nobody can really understand how hard it is! Be kind to yourself 💐