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Original poster

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

48 replies

Aero · 07/01/2011 23:10

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?

OP posts:
wasuup3000 · 07/01/2011 23:42

Going through the same thing with my 6 year old, says the same about not feeling it. We are seeing CAMHs they are going to do a social story around something called "the sneaky poo" and work with him. School are supposed to make sure he sits on the toilet everyday for 10 mins but he doesn't and school don't monitor it as they don't won't to draw attention to his difficulties. CAMHs are wise to schools not taking their suggestions up on the first couple of times of asking and are prepared to be persistent about it with the school.

wasuup3000 · 07/01/2011 23:44

www.narrativetherapylibrary.com/img/ps/spoo2.pdf

Found it here - it does need adapting for age, maybe shortening and missing out the stuff that might be too detailed.

Original poster
Aero · 07/01/2011 23:52

reallywasuup? I took him to the GP and they gave us lactulose. That was a few years ago before I associated it with ASD. Paed prescribed Movelat - disaster!

I didn't realise CAMHs could help with this - he doesn't have major behavioural problems at school, so it has never been suggested that there could be help with this on a more social front! Also his dx is verbal (paed and I agreed a dx on paper might not benefit him later in life), so he no longer is seen at the hospital. I'm beginning to think this might be a mistake because his will is getting stronger and he is exercising it more as he gets older (naturally)!

OP posts:
wasuup3000 · 07/01/2011 23:52

Just reading through that now and its going at it from the angle of constipation my sons problem with soiling is a sensory one, hence the story being adapted for his needs.

Original poster
Aero · 07/01/2011 23:56

x posts - just had a v brief look - that looks good wasuup - and it at least satisfies me that we are not in fact crap (no pun intended) parents who can't get out ds2 to sit on the loo etc etc.........will read that in more detail now - thank you! :)

OP posts:
wasuup3000 · 07/01/2011 23:57

We went through a movicol stage given by the medical paed at the hospital but as our son was not constipated they referred the matter to CAMHS who had recent dx our son so we already had a keyworker that we knew.

wasuup3000 · 08/01/2011 00:01

Its Ok I know how frustrating it is. Our son with ASD is educationally gifted but not self aware yet.
School just see a bright boy who follows rules and most of the time does as hes told in class although they acknowledge his communication is poor.

wasuup3000 · 08/01/2011 00:04

This might be useful to you as well?

www.thegraycenter.org/social-stories

Original poster
Aero · 08/01/2011 00:04

Exactly wasuup - same! They assure me he won't need a statement - and so far, I agree, but he will certainly need understanding!!

OP posts:
Original poster
Aero · 08/01/2011 00:06

When you say he's not constipated - how do you mean? I ask because I've always said ds2 is constipated, but actually I fully believe it's behavioural and he really doesn't like the 'poo' aspect of toileting. He has no pain when he does eventually go, but he can hold it for weeks!

OP posts:
wasuup3000 · 08/01/2011 00:09

I applied for a statement and got refusal to assess, so I took the LEA to Tribunal but they backed out the week before and agreed to assess. Then they gave me a note in lieu and then did almost the same thing again when I took them to tribunal. I am awaiting a statement for my son he also has ADD and dspraxia (1st percentile for dyspraxia) which is overdue from the LEA but I know its on its way at least!

wasuup3000 · 08/01/2011 00:11

Its a sensory issue for example my son can't feel when hes too hot in the summer and leaves his jumper on with sweat pouring from him and is under sensitive to pain, doesn't like the Hoover and handryers ect.

wasuup3000 · 08/01/2011 00:12

Therefore he either holds it in because he doesn't like the feel of it or can't feel it coming out or a mix of both.

Original poster
Aero · 08/01/2011 00:14

I'm currently taking LA to tribunal over dd who has ADD and SpLD, for refusal to assess - she is in Y6. Not sure I can handle any more stress!! He definitely has certain sensory issues - noise being one of them.

OP posts:
wasuup3000 · 08/01/2011 00:20

I have a DD in year 7 with a non verbal learning difficulty, SplD and selective mutism, fortunately I didn't have to goto tribunal for her statement but its a bit rubbish and I have had to work hard to improve it battling the LEA has taken up a lot of time over the last couple of years!!

Original poster
Aero · 08/01/2011 00:20

I reckon it must be sensory with ds2 then also.

Thanks so much for posting - sometimes it's just knowing you're not alone in the struggle is enough to make things look brighter! It just got on top of me tonight (although I stayed calm). We have a meal to go to over theweekend and he is often sick at restaurants because his tummy just can't cope and I was not wanting to go......will be ok again now for a while as the 'beast' has been expelled!!

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wasuup3000 · 08/01/2011 00:21

Yeah!! :)

Glad to have helped in some way and good luck!!

jabberwocky · 08/01/2011 00:35

Don't overlook the possiblility of fecal compaction and seepage. We went through 2 years of colon rehabilitation with ds1 (who has Sensory Processing Disorder) and the last couple of years have been much better.

Original poster
Aero · 08/01/2011 00:42

Thanks JW - There could be that too. This has been going on all his life - his (sorry to be graphic) 'beast's are enormous - always have been and he's always been funny (peculiar) about it and has been a reluctant toileter in that department from the word go.

I'm off to bed now with my reading material! Thank you both for replying. :)

OP posts:
jabberwocky · 08/01/2011 02:53

Aero, ds1 was on Miralax for a year (I think the same as lactulose in the UK) then I decided to try other things. What really seemed to get us on the right track was cod liver oil at night and probiotics in the morning. You have to get the really good probiotics that have "good" bacteria in the billions and come chilled. I break open the capsule and put it in juice.

For the cod liver oil, my best experience has been to spoon it into a glass, have a separate glass with strawberry syrup and draw up each into an oral syringe. Then, down it goes without much complaint. Otherwise, tbh, cod liver oil is rather ughhhh.

oliviaaah · 08/01/2011 18:04

Aero, Ive been having this issue with DS recently too. He's recently 7 and we're waiting for an appointment with the paed to assess for ASD. He had been witholding for about 9 months or so and before Christmas I lost the plot (as you do) and finally went to the doc with him. We waited for the school holidays to start and blitzed him with lactulose and movicol. So much that he absolutely could not hold it in. He's been taking it for three weeks now and the habit appears to have been broken. He's also having a yakult in the morning, as much to drink as I can possibly get down him and ditto with fruit. We're gradually lessening the dose and keeping our fingers crossed. Lots and lots of encouragement and praise, lots of appealing to his lovely logical mind. It helps that he's very compliant to those in authority, so 'what the doctor says' is respected, and, btw the doc was great! Got down to his level and talked to him like a grown up - just right.

Please forgive me if you've tried this already and it hasn't worked. I wish I had gone to the docs much sooner, but I kept thinking I could sort it myself. Definitely worth waiting for a holiday to do it though, so there's no added stress about soiling in school. We kept a chart with columns for 'ouch factor', amount, hardness, etc, which he also quite enjoyed filling in. Going back to school this week, he asked me to tell the teacher to let him go to the loo quick if he asked, so I did and that was fine. (Mind you, he hasn't done a poo at school ever I don't think).

Good luck, and let us know how you get on.

Also, get cheap pants and chuck them away. Life's too short and you've got enough on your plate.

jabberwocky · 08/01/2011 18:31

Good point oliviaah, ds1 had his own bathroom pass last year so that he didn't have to wait. He had been doing well with poo control but the initial problem had escalated initially to the point where he couldn't hold in wees either and we were still dealing with that to some degree. So far, this year he is doing well

Original poster
Aero · 08/01/2011 20:00

The lactulose has definitely helped this time, (for now anyway) and he has probiotic drinks. He will only drink when he is thirsty though which isn't nearly often enough in my opinion, but I cannot force him to drink. He will only take a sip and then tells me he can't drink any more, yet when he's thirsty he can down whole glasses of water in a few mouthfuls! He, of course is a verrrrry fussy eater and this, I am sure is sensory. He likes the taste of some fruits but not the texture or the skin etc. He eats grapes - very fussy about which grapes are acceptable! Crunchy apples only - will only eat peeled. Chews clementine segments and spits out the 'skin' bit etc, etc. He sucks the seeds from tomatoes and leaves the rest. He will eat raw peppers, carrots and cucumber (peeled), so there are things he will eat, but of course, no amount of cajoling works for the AS child. I hate how professionals look on parents as if it is their fault their children are fussy. We know all the healthy options and ds1 and dd both eat well. It is hard and frustrating, but I think food battles are not the ones I wish to get into with ds2 - there's soooo much else to worry about tbh, and you're right - life's too short. I should throw away the pants shuldn't I - guess my severe problem with waste prevents it, but it has been very draining!

OP posts:
mumslife · 08/01/2011 20:58

This reply has been deleted

Message withdrawn at poster's request.

oliviaaah · 09/01/2011 14:40

Aero I so agree with you about food battles. I have gone a long way to avoid them. We seem to trundle along ok in that area at the moment. He states his likes and dislikes so strongly, but will say 'I hate potatoes' and will also eat them without any cajoling in the same meal, so ignoring his protestations seems the best way to proceed. I try to keep the conversation away from food at the dinner table if I can, and also, when we eat out, he's much less fussy. He'll happily tuck into moules frites at cafe rouge!

Also, when DS started taking these huge doses of lactulose and movicol, he started drinking more at the same time all on his own. I expect there's a link there. Also, he's quite fond of soya milk, and I've read on other threads that dairy products can exacerbate this problem.