There must be something I can do

[Zipidydooda]

Have never made a thread before but posting here desperately hoping someone can help me as so far anyone I've gone to haven't been able to!

I have a 8yr old asd boy who struggles with his toileting (both bladder and bowels). He has a lot of anxiety around going to the toilet and will often rather go in his clothes than stop what he is doing and go to the toilet. He does understand consequences (smell, sore skin etc etc) but doesn't seem to care. He doesn't tell us when he has done it and will often stay in his wet or dirty clothes until we notice. He often lies about having done it or that he needs to go to the toilet when we ask him.

There is no physical or medical reason for the incontinence (he's had tests etc) so it is all behavioral and anxiety based. We have tried everything we can possibly think of to resolve this issue and get him clean and dry. We go with him so he isn't alone, we ask him regularly to try and use the toilet, we've done visuals, reward charts, sensory toys in bathroom for distraction, had conversations about why it's important etc etc. unfortunately we have also got cross at times as we feel like we're just getting no where. what else can we try?

Apologies for the long post but please, is there anyone out there who has been, or is going through this? Anyone who can offer advice or something that might work for him? And how do we undo the damage we may have done by getting cross with him about it 😔

Anyone?

Is DS receiving any support for his anxiety? Is he under CAMHS and the continence service? What is school like? Does he have an EHCP?

Hello, my son is coming up 8 and has ASD himself. He will not use the toilet at all. So I spoke to my council about a commode which has been brilliant for him.

Fundamentally all behavioural changes come about because they benefit the person involved. You make it enormously inconvenient to soil clothes and enormously gratifying to use the toilet. Consequences are the only way to produce lasting change. It takes time and consistency and you can’t cloud the process with rage or fear. It’s important not to see it as the more clumsy reward and punishment model more commonly expressed.

For example if every time you see your child pick their nose they must stop what they are doing and wash their hands they soon learn not to do it (or more accurately not to be seen doing it).

I would imagine there are many consequences of soiling that are inconvenient and time consuming. I would imagine if what you are doing is fun and satisfying that quickly using a toilet and getting to keep doing it is a huge draw.

@EndlessLight he isn't under CAHMS and is not receiving professional support for anxiety. He doesn't have a diagnosis of anxiety, just the asd. He is under the care of bladder and bowel specialist who has made many suggestions and spoken at length with him, but we still haven't found anything that works.

School are actually very supportive and have made adjustments there too, he has a designated toilet just for his use and they regularly remind him to go to the toilet as well as allowing him to leave a lesson on the rare occasion he does say he needs to go. There is no EHCP in place though. I did bring it up with them but they said he is managing with all other aspects of school life and it's unlikely and EHCP would get approved.

@Tiny1994 thank you for the suggestion but I'm not sure that would make much difference to our son, it's not about sitting on the toilet, it's about being in actual room. A commode would still have to go in that room. Once he is in the room with one of us we can usually get him to sit on the toilet. The issue is getting him to go there in the first place.

@Gazziliondayz we do give consequences and are consistent with them, but it is not working.

DS needs more support for his anxiety.

Request an EHCNA. Many schools incorrectly tell parents their DC won’t get or don’t need an EHCP.

Other than adjustments for toileting what support is the school providing? Reducing anxiety by better meeting DS’s needs will help.

Request a referral to CAMHS.

Has DS had a sensory OT assessment?

So the anxiety is focused on the bathroom rather than the toilet?

@Gazziliondayz sort of, it is a bit of both. At home he is happy to sit on our toilet but the issue is getting him to stop what he is doing and go in the bathroom. When we are out anywhere/visiting relatives etc he will not sit on a toilet, I can convince him to go into the room if I go with him and he stands to wee but under no circumstances will he sit to open his bowels.

At school he doesn't like the room or the toilet (he's been given multiple options for which room/toilet to use) sometimes he will run into the room, wee as quickly as possible and then run out. Most likely he will avoid going at all and that's when he wets.

@EndlessLightOther than the toileting issues he doesn't receive any additional support from school, he has no issues with the academic side of school, infact he's like a sponge and just soaks it all up. He does struggle socially but they worked with him on that and he now has a few friends.

I get outbursts when he comes home from school so I'm aware that sometimes things at school do bother him, but at school he is the quiet kid, he does what he's asked, he never speaks up if something has upset him.

I haven't heard of an EHCNA, what is that? He hasn't had a sensory assessment either. He's only recently diagnosed and I am trying my best as I learn more, but I'm a bit lost. I don't know how to help him or what is available. He's had input from early help, bladder and bowel nurses and I've approached several charities to discuss and see if anyone else can help. Perhaps wrongly I have just taken what I've been told by the school and just accepted it.

I'm so worried he is going to lose his new found friends due to this, let's be honest, kids are cruel sometimes. And I feel like I'm letting him down by not being able to fix this

I’ve found children infinitely kinder than adults about differences. The school will take a strong lead.

what happens when he doesn’t use the toilet and what happens when he does?

Unfortunately, schools don’t always tell parents accurate information.

The school should be providing more support. Request a meeting with the SENCO. Support at school is about more than academics. The school should be working with DS on anxiety, social skills, emotional literacy. The outbursts at home following school are known as the coke bottle effect. It signifies unmet needs at school. If school was easier, home life would improve, and it is likely the toileting would improve, although maybe not be solved completely.

An EHCNA is an Education, Health and Care Needs Assessment. It is the needs assessment you first request as part of the EHCP process.

Not all ICBs commission sensory OT on the NHS, but if your area does, it is worth a referral. Even if your area doesn’t provide sensory OT on the NHS and assessment can be part of an EHCNA.

It is worth reading about how sensory processing differences influence toileting.

It is also worth looking at demand avoidance and PDA strategies. Demands can be internal demands, such as needing the toilet.

@EndlessLight thank you. You've given me somewhere to start and I'm going to get straight on to these things tomorrow.

I don't put my commode in the toilet I use it in the hall way. I accommodated it for him. The reason why my son won't go to the toilet is the bathroom it self. He doesn't like the toilet. The noise it makes scares him.

@Gazziliondayz are you referring to consequences or praise we give? If he doesn't go to the toilet in time, once we have realized we stop him from whatever he is doing and take him to the bathroom, he is perfectly able to clean himself up and deal with his dirty clothes so he is instructed to do this himself and we don't leave until it is done properly. We then reiterate why he needs to be on time and what happens if he's not (smell, sore skin etc).

If he tells us in time then we make sure we go with him (one fear is being alone) and stay as long as he needs to finish properly. We then give plenty of praise and cuddles. (Used to give rewards but that seemed to put extra pressure on him to 'perform' and he couldn't cope).

@Tiny1994 that makes sense and is something we could consider, we did have a camping toilet which made a difference for a while but for other reasons we had to get rid of it. However that still doesn't help us when we are out or when he is at school. How do you manage those situations?

He don't use the toilet when his out or at school. He only does half days at school. Also refuses to go out if it isn't school. So can't help you there sorry.

To me the impact on his day seems very similar regardless of where he functions. Praise can be as detrimental as punishment, the aim is that the desired behaviour is intrinsically better for him.

so if for example he soiled himself while watching his program when he returns having done the right thing in that circumstance does he just get to take up where he left off? If he goes to the toilet does is his program waiting when he comes back.