Aspergers and soiling...................

[Aero]

Ds2 is currently sitting on the loo (I've been banished). I have made him sit there for the next 10 minutes in hope of some sort of production. (Fingers crossed). He should be asleep - but his tummy is sore - hurting from days of holding and he's at the stage where he can't really eat etc.

He will be 7 next week. He is very clever in every logical way and has no learning difficulties (in the educational world anyway).

It's doing my head in. I know he can't help it, but the amount of soiled pants and bits of dry poo falling out of his pjs and the constant floor cleaning and bed changing because he's very aware of the problem and is embarrassed and doesn't want to need help with it IYSWIM. His intelligence tells him it is not cool to have soiled pants at age 7. He says he can't feel it. He can't discuss it and he literally spells out the words when he needs to say something about it. (i.e - has just come in now and spelt 'done' out - hooray, at last)!! I don't get it. Will it ever end?

Has anyone's ASD/Asperger's child with this problem outgrown it?

mumslife, there is definitely a link. A lot of research is now focusing on the Brain-Gut-Immune Triad of ASD. The advice we followed:

1. First make sure you have cleared any impaction/impactions. This will usually mean one or more enemas, possibly suppositories and then lactulose.

2. Start using probiotics, limit or elinimate constipating things like milk and bananas from the diet.

3. Wean off lactulose and onto cod liver oil.

This is basically what colon rehabilitation is all about. It can take a loooong time but is worth it!

look at www.treatingautism.co.uk

It is so helpful to know this frustrates other parents too. I think we have at least shifted the culprit at the end of the bowel this weekend! So much so that it blocked the toilet (ugh)! We are going with the lactulose in the mornings and will set the alarm for 6pm each night with the ds and a glass of warm water (which he doesn't really enjoy, but it definitely helps move things on a bit quicker).

We've gone through the 'sneaky poo' social story tonight too and I think it's made some impact (again, no pun intended) that ds2 is not the only child who goes through this! It at least got him talking about it and thinking of his own suggestions for posters etc.

My son is 8 and has finally been referred to the hospital because of the amount that he poos. He too says that he never feels a poo and soils.

They have ruled out constipation because of the volume and number of times that he goes in a day but suggested that he never really learnt how to poo.

We were under the paed's advices going to the loo every hour because he goes so much but this did not really reduce the soiling.

We are now trying a different approach by only going 20 mins after every meal and my son sits on the loo and blows up a balloon - this is the closest thing apparently to help him use the muscles that he needs to have a poo, he has to blow the balloon up 4 times each time for this month and then we have to increase the time so that he is not left on the loo straining.

I have to go with him as leaving a child with a balloon is not the best idea :) but I had to anyway as he can't wipe etc.

I have no idea if it is going to help but just wanted to pass the idea on.

look at the treating autism website (address above) - lots of stuff about diet (gluten, casein etc ) that can worsen problems

((also google 'retained reflexes' which i think can also be a factor in these problems - may be worth seeing sensory trained OT if that is the case ))

That could be a really good idea dennymosh . Gastro paediatrician is running out of ideas with my DS2. They have said all my DS suffer from IBS - they have identified some trigger foods, but it will always be hit and miss as to all of them.
As an IBS sufferer myself, i can see how the withholding cycle can start. It is really soul destroying to not be able to control how you feel during/after eating. To find an element of control is empowering. Then you can't control the consequences of withholding - and the feelings of powerlessness come back.

DSS is autistic (Asperger's), aged eight, and also soils himself. It's been an issue for years. Medical causes were ruled out and it seems to be mostly linked to emotional issues and stress. However, DSS claims not to know when he needs to go and then suddenly it's too late and he's soiled himself.

The school are trying to put in place a soiling program to try and deal with things. DSS doesn't tell them if he's soiled himself, can't clean himself up and doesn't seem to be aware of the massive social stigma that his issues cause, despite doing social stories.

At the moment, we're finding that bribery is working best. If he goes a week without soiling, he is rewarded with being able to make crystals in a science experiment.

My son is nearly 10 and he still soils himself saying he cant feel it, i thought he was just being lazy and didnt like going to the toilet, I am relieved that other children with asphergers do this and its not just my son, we have been to numerous specialists about his problem and they have just palmed us off saying its all in his mind and hes just being lazy and then started asking questions about his home life and school life as if something was happening to make him do this, i just wish they had told me this was quite normal in children with asphergers it would have saved a lot of hassle, just hope he grows out of it soon

Its my understanding that what starts as not going to the loo (witholding) because the child has poor body awareness or sensory anomalies- as is not uncommon with ASD (and perhaps is too busy playing), can become constipation due to enlarged bowel capacity and slowed movement. Then things get worse with whats called encopresis (running through) but means constant soiling with the child having very little control and a miserable time. The treatment for my son was to use stool softeners and senacot to keep things moving until the bowel had reduced to normal size and can work properly. This took a couple of years of treatment, but now he knows when he needs to go and despite his ASD usually gets there on time. Ds only started to improve once we saw a specialist in constipation - the poo doctor! For any one whose child is suffering encopresis I think specialist help is best. Some hospitals have a specialist constipation nurse.

my child too! But for us, the answer has to be to keep habit of regularily going to loo after meals/breakfast, and before outings, not wait for him to tell/judge. He is 10. Not serious soiling just traces and he isn't constipated. I think he is holding on for sensory reasons. When he has been on days out, or residential trip there have been no problems, so I think he tunes out when he is at home, and in a safe setting. I think he has got into a habit of holdingon and associates it with playing with cars or computers To some extent he just "can't be bothered" that is an ASD aspect too. We are working on the idea that he needs reminding and trying to stop him playing for long periods unattended. He has no obvious anxieties or OCD, and he is best with a re-inforced habit.
Our son rushes off and takes a shower when he thinks he has slipped up, so he is completely aware of what he has to do to solve problem (wash himself,new pants); I sppose the next stage is getting him to put the same amount of effort into remembering to "go" early enough. He used to be a bed wetter and that has ceased so I am very hopeful.

Things have definitely improved though over last few years. I think he will stop this habit and it has never been a school problem.

My DD did this until age 8. Movicol sorted her out. Once they get used to withholding they can't feel the need to poo and seepage occurs around the large impacted poo. DD is still on daily Movicol and I don't know when we'll give it up! Sometimes (a lot of the time) I still have to remind her to poo, when I can see she needs one - she starts squirming!

It's an ASD issue?! Why has this never been told to me before?!

DS2 is on daily Movicol, has been for years, doesn't really help but still giving it to him (?!).

HE says he doesn't 'feel' when he needs to go, and we have all the issues mentioned upthread, he's 9yo now and still no closer to being clean, despite having been dry for years.

And DD had similar issues until she was 7/8, so there was even an overlap there. Both have ASD.

FFS! 13 years I've been dealing with this, and I never knew it was connected. What can I do to help him?

And yes, this year, finally, after 13 years of washing underwear, I finally decided that life was just to fucking short to be elbow deep in shitty knickers and pants, and have finally started throwing them away and buying new ones.

It's an ASD issue?! Why has this never been told to me before?!

DS2 is on daily Movicol, has been for years, doesn't really help but still giving it to him (?!).

HE says he doesn't 'feel' when he needs to go, and we have all the issues mentioned upthread, he's 9yo now and still no closer to being clean, despite having been dry for years.

And DD had similar issues until she was 7/8, so there was even an overlap there. Both have ASD.

FFS! 13 years I've been dealing with this, and I never knew it was connected. What can I do to help him?

And yes, this year, finally, after 13 years of washing underwear, I finally decided that life was just to fucking short to be elbow deep in shitty knickers and pants, and have finally started throwing them away and buying new ones.

Couthy it isn't exclusive to children with asd, just more common. Ds is also 13 and still on movicol, despite being an enthusiastic friut and veg (well most veg) eater. I found the soiling ( which is just about resolved now) one of the hardest parts of caring for ds.

my son is 13 has dyspraxuia and recently being tested for aspergers. He too has had this problem for many years.

however what i discovered after a lot of work with the ot is that the problem, wasn't him not feeling it,when my son was using the toilet, due to balance issues he was to busy focusing on the balancing and not the act, that he never pood properly, therefor his bowels became lazy, impacted etc.

we bought him a seat for the toilet s with handles so that he could hold onto and felt secure (like a child toilet seat, with handles and a step. problem solved.

however my son will never use a toilet outside the home.

The seat with handles sounds promising - where did you get that from? Any chance of a link? I'm quite happy to buy one and see if it will make a difference.

At the moment, his soiling is supposedly dealt with by the GP, but it's getting ridiculous, all he does is write out a repeat prescription for Movicol.

Is there some sort of Consultant (a poo consultant?!) that DS2 could see? Who would I have to ask for a referral to?

This needs to be solved by the time it comes to Secondary transfer, which gives me 2.5years. I haven't cracked it in the last 6 years, so 2.5yrs seems like it's unachievable but I need to try!

I want to have him referred on to someone who might know what they are talking about, unlike my GP, but I don't know who to ask for a referral to!

kid version

adult/family model

ERIC is amazing. Standard GP advice plus Bristol protocol and Bristol stool chart are worth a look.

Who to get referred to depends on your area. A phone call to the school nurse should tell you how enuresis/ encopresis services are set up.

There's an appropriately named Paediatrician with an interest in gastroenterology near you. No idea if suitable service though.

Hi the link posted above is the seat I have, it made a huge difference to my son as it allowed him to feel secure while using toilet.

Hi sorry its just the kids version we have, my son is 13 but is tiny, maybe size of a 10 yr old and he still uses it fine

My ds will be 9 soon and has the same problem. He has never been 'clean' since coming out of nappies. Although he never fully soils himself, there is always varying amounts of poo in his clothes and around his bottom, every time he needs to go.

My son has told me previously that he doesnt know he needs to go until it 'starts to pop out' (about 2 years ago) and he used to soil at both home and school.

It it now just restricted to home and he refuses to use the toilet in school and holds onto it all day. Which kind of contridicts my previous theory that he doesnt have much control over it, if he is able to hold onto it.

He now says that he is scared to go, he refuses to use the word 'poo' or any other word relating to toileting functions.

We have seen various experts, we have tried the sitting on toilet regularly etc and nothing seems to work.

I have reached the conclusion that sometimes, this is just as good at gets.