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a thread to talk about ASD and loss of urinary continence

(24 Posts)
UnChartered Mon 18-Mar-13 18:32:55

sorry for the thread title, but i didn't know how else to explain it.

DD is 5.9yrs, Y1 and was 'potty trained' almost 3 yrs ago.
she has a dx of ASD, is waiting for assessment for SPD and waiting for anxiety therapy with CAMHS.

she has hardly ever wet her bed, but has frequent and sometimes prolonged episodes where she cannot make it to the toilet on time during the day.

there are times when she wees and has no idea until it's too late.

she has had social stories about the toilet, she is not constipated, she hasn't got a UTI, she hasn't been sexually abused (GP asked, i was happy to answer all his questions)

i don't know what else to do/try

she's HF in that she has a great vocabulary but at times she is hard pushed to form words, and she very rarely volunteers information.

it's taken me 20 mins to write this post as she's needed changing.

actually, add another 10 mins because i'm having another cry about it.

Sunnymeg Mon 18-Mar-13 18:43:59

Had this problem with DS. Apparently the messages in the brain about bodily functions, aren't as strong as a lot of the sensory imput the brain receives. So if the brain is dealing with a lot of sensory stuff, IE in a busy classroom, then they may miss the normal cues telling them to go to the toilet.

DS is 11 and we still have the odd accident. He always has a change of clothes in the bottom of his schoolbag. He got used to changing himself when he was quite young, 5 or 6 I think, that took away a lot of the embarrassment.

UnChartered Mon 18-Mar-13 18:55:06

thanks for replying Sunny, is your DS in MS school?

UnChartered Mon 18-Mar-13 19:03:25

i ask because i've kept DD at home for short periods of time when she's at her worst, i'm at a loss how to manage it really

PolterGoose Mon 18-Mar-13 19:15:53

Hi UnChartered I will re-post a slightly edited version of what I posted on the constipation thread;

My experience with my ds is of him holding in his wees which has the effect of making his behaviour horrific. None of the professionals we have seen over the years (he was dx at 6, is now nearly 10) have ever taken it seriously It was really hard, seeing ds in discomfort and telling him to go and try but him insisting he didn't need to etc etc and then him having a desperate leaky dash to the toilet, with his behaviour getting more and more violent. I always assumed for my ds it is a sensory thing as he displays a whole range of hypo- and hyper-sensitivities to many external sensations so, in the absence of anyone taking any interest at all, I had to draw my own conclusions.

His was also coupled with not drinking enough, especially at school and the school staff just did not take me seriously when I said he needed to be told directly to drink and wee, standard response was "Well, we do remind the children" which wasn't enough as ds clearly couldn't feel a full bladder.

I think, with hindsight (and we still haven't cracked it completely, we still get terrible behaviour when he has a full bladder and he still often refuses to go until the last minute, but leaks are rare) that getting him to drink lots has improved his recognition of needing to go.

Something else that is really important is not to ask a child to go and try unless there is a pretty good chance they are ready. Trying to expel a small amount of urine is hard to do (go try when you don't need to!) and may (this is my speculation) mess up signals. I worked out that after a drink eg a dreaded Fruit Shoot (anything that got him drinking was worth it) he would be ready to wee after half an hour. It helps to work out patterns.

Ds was late to toilet train at 4 and not reliable (in the loosest sense) for nearly 2 years, he had lots of accidents in reception. He was dry at night within a day of starting toilet training and has never wet the bed confused

The whole thing has always confused me as I've heard of many poo-withholders but never wee...

silverfrog Mon 18-Mar-13 19:30:12

oh, dd1 was a wee-holder too!

after a disastrous attempt at potty training, by her nursery (against my wishes angry) when she was 2.6, she started controlling the amount she drank in order to be able to control her weeing.

she was terrified of havign an accident, and so would hold and hold. in order to not be uncomfortable, she therefore stopped drinking. completely. for 9 months.

it took us a further 2 years to get ehr to reliably drink more than about 20mls of liquid in a day. again, all thoughts of 'good' drinks went out of the window, and she was allowed anything which she could tolerate. it was still a long, hard road.

we finally started toilet training her when she was 4 - it took that long for us to be sure she was drinking enough in the day to ever have a full bladder. and even then, she was drinking so little that she could (and did) hold on all day until she was desperate at about 5pm - we had one shot each day at getting her to a toilet.

then, once she was trained at home, she would refuse to go to the toilet at school, as she was so private she didn't like other people helping her wipe/dress. and so back to holding all day, and controling the amount she drank.

she is 8 now, and will now go to the toilet at school if directly told (she has a reglular toilet schedule), and can wipe/dress herself. we are now working on poo, as she holds that too all day (same reasoning on privacy).

when stressed, the first thign that goes out of the window is drinking, and therefore going to the toilet. her behaviour deteriorates as she gets more and more uncomfortable, but she still resists going to the toilet.

holidays/travel can be a nightmare because of this. once she has gone to the toilet in a new place she is usually ok, but getting her to go the first itme is tricky <sigh>

she has toileting as part of her (extensive) IEP.

UnChartered Mon 18-Mar-13 19:30:45

Polter yes, the denial when you know they haven't been all day and can see them wiggling and jiggling

and asking 'do you want to go to the toilet'...she takes that as a direct question and answers accordingly. she doesn't want to go at all, so is it denial and about transitions as well?

bochead Mon 18-Mar-13 19:32:26

Could it be anxiety related?

For DS both day and night urinary continence is directly related to his anxiety levels. I sort out what's worrying him and the problem stops. (Sounds simplitistic but as I'm sure you'll understand it took years to get to this stage).

silverfrog Mon 18-Mar-13 19:32:29

we have stopped asking dd1, and instead say 'dd1, toilet'

if she is reluctant, that is quite often 'dd1, toilet, NOW!' - she does love to push boundaries, and is never happier than when making us cross <another sigh>

but asking her if she wants/needs to go is fruitless - she just denies it.

UnChartered Mon 18-Mar-13 19:33:21

i didn't mean to ignore you there silver

it's taking me a while to press 'post'

DD is having another fight in the bathroom with DH

be back soon

PolterGoose Mon 18-Mar-13 19:40:46

Silverfrog same here, of course he doesn't want to go, we can now say "ds, go and try for a wee" and he mostly will, depends on mood, even better now we have 2 toilets so sometimes he will respond to a competitive seeing who can wee first (obviously I need to need a wee too!)

It is only recently, at 9, that he is starting to be more aware of his own mood and what helps so he knows if he feels antsy to go try for a wee but it is a case of whether he recognises either the bladder signals or the angriness early enough or the mood takes over so he doesn't think straight.

Sunnymeg Mon 18-Mar-13 21:29:30

Unchartered, yes he is MS.

UnChartered Tue 19-Mar-13 11:47:33

sorry not to have come back to this last night, WW3 happened (you know how it goes)

anyway, i think DD has 2 issues

she probably has SPD and has difficulty with proprioception, she is only just learning to recognise hunger from within instead of by the clock and can go 6+ hours without drinking for instance. in times of high stress (like christmas or illness) - this is when she loses all control.

and then when she's busy concentrating on something, her rigidity of thought kicks in and she won't go because she's frightened of missing what she's doing

actually, she's got 3 issues, she hates the smell, the lights, the sounds and water splashes on the floor....

used2bthin Tue 19-Mar-13 14:14:30

I had no idea this was related to autism, thought it a coincidence that dd had developed the same issue as a friends child who also has asd. Dd was dry by day before three and was very reliably dry in the day till five and a bit when she started school. She now continually leaks urine. It coincided with her meds being out for her genetic condition and her surgeon tinks it could have caused the messages to the Brian to not be working effectively. Reading with interest!

used2bthin Tue 19-Mar-13 14:16:33

Oh and at school they had to send her in on her own to the toilet otherwise the noise of the hand dryers had her hurting other children. But it took a while before the connection was made, I wonder if that was the start and she avoided going maybe.

UnChartered Tue 19-Mar-13 14:37:52

used i've had lots of nods and 'yes, this is common in child with ASD' (caring carrot? ) but no offering of any actual help with it

it's beginning to affect her quality of life, one Dr is talking of meds to relieve her anxiety, when i'm not even 100% it's totally down to that confused

UnChartered Tue 19-Mar-13 14:38:29

the nods are from professionals, i didn't mean here blush

PolterGoose Tue 19-Mar-13 19:16:35

blush I hadn't even thought of the hunger thing... Ds eats 'by the clock' too.

There really is a lot of stuff we adapt to without even thinking about confused but, I suppose having time to think and reflect is a rarity for us all hmm

dietstartstmoz Tue 19-Mar-13 20:33:44

The timing of this thread is perfect as DS is now aged 5.5 and has been toilet trained for 8 months, but in the past 2 weeks has been having several wee accidents every day. He is definately not drinking enough and I also think his sensory processing is very bad at the moment and this could also be affecting his ability to focus on the urge to go. Some interesting points for me to think about

MummytoMog Tue 19-Mar-13 21:13:30

No idea about the bulk of the issue (although my friend's twelve year old still takes medication for night wetting at stressful times, and isn't on the spectrum) but rather than miss school, would a big pull up work or would it get flooded/DD wouldn't want to wear it? DD is a bit hit and miss on the poo front, so she goes to nursery is a pull up when she's having a particularly bad phase and sod the teachers (they don't want her to go in nappies. So for the first term, she wet herself twice a day every day. Sigh). DD is now basically potty trained, but doesn't realise she's doing a wee if she's engaged in something else interesting. So we get the occasional bag of wet clothes from school when they've let her use the computer.

ilikemysleep Tue 19-Mar-13 21:48:41

I have 3 'autistic like non-nts' and one 'bipolar like non-nt' kids (only 1 dxd with aspergers at present). The bipolar-like one has perfectly normal toiletting habits. Ds1, who has aspergers, was reasonably easy to train but wees very infrequently. I only recently found that he isn't weeing when he gets up and often not til lunchtime, apparently without discomfort. My 5 year old does the leaking wee thing intermittently. He was trained with a lot of effort at 3, fine for about a year, then started being constantly a bit wet all through reception, then improved a bit in year one, now we are just starting another round off. He is very hyposensitive to pain, very clumsy, always covered in bruises, and poor at managing and organising his body - for example he drooled for ages and was a late talker because he struggled to articulate, was slow in learning to bit and chew, that sort of thing. He is very literal but quite kind and empathic and doing OK socially just now so I am biding my time on an ?ASC investigation. My daughter is 2.10 and we are in the midst of the wee holding from hell. I had her in A and E this weekend as she had not weed for 24 hours despite being absolutely desperate. She hates being wet, won't wear a nappy any more but is terrified of voiding anywhere and won't sit on the potty (I thought girls were supposed to be easy...) . We are filling her full of juice so she wees two or three times a day when she literally overflows. It seems to be a combination of perfectionism and sheer stubborn determination of mind over matter. And yes, I think she may well be an aspie, though hard to tell as she is so sociable compared with my boys (but then, she would be, wouldn't she?) - if not she definitely has sensory processing issues - won't wear jumpers, hates loud noises like hand dryers or hoovers, etc etc. I suspect she will be like DS1 and wee only very infrequently...but then before I had the children I would wee in the morning and then not till after the end of my school day quite often. The difference is that DS1 was always quite biddable and would go to the loo when told to!

Have you seen those 'dry like me' pads? www.amazon.co.uk/Dry-Like-Me-Toilet-Training/dp/B005OIGBQA
they might work to prevent leaks appearing through her clothes, as might training pants like the brightbots, if you could persuade someone to remind her to change either over at lunchtime....I would also ask for a 'boot camp' - that she be told to go to the toilet at breaktime, lunchtime, and afternoon play. For all the good it will do, unless she has one to one support....I begged them to do this for my DS when he was constantly leaking and smelling and they said 'of course' and never did....of course...

used2bthin Wed 20-Mar-13 19:57:48

Dd wears tena lady minis and being dd, she now won't get dressed without the pad so I can't see how good or bad it is butitisupsetting when she was so good with it before.

We were offered meds too but due to chronic constipation she can't take them. Can't believe how many others are suffering with this too!

UnChartered Wed 20-Mar-13 21:45:45

i like the idea of the 'bootcamp' that might help to de-sensitise DD and get her to go regularly - she responded very well to an alarm clock system i used one time when i kept her out of school for it, i was setting it for varying times at which she had to go to the toilet, and she did. totally non-verbal cue and she responded.

maybe i need to think about using pads for her - not sure how to address that though

used2bthin Wed 20-Mar-13 22:05:40

The down side of pads for dd is she gets sore and has had a couple of utis. But she was needing changing every ten mins and the pads mean she can just have it changed at lunch time and less worry about odour etc so it has worked really.

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