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Dad of Alix

Links between PDA and soiling?

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My 6 year old daughter has a PDD-NOS diagnosis, which I don't believe fits her properly. I've only just heard of PDA and the more I read the more I feel that it's something I'm going to have to chase up.... (waiting for a call from CAMHS as I type)

My question to anyone who has any experience of PDA is this... Are there any links to soiling? My daughter soils regularly, 4-10 time daily. She had fecal impaction and spent a week in hospital last year. She now take Sodium Picosulfate daily and whilst we can have an occasional good day the majority are bad. She refuses to go to the toilet when she needs to, prefering to soil anywhere, although never while she is sleeping. She fits so many of the other criteria but I can't seem to find anything on toileting being a factor....

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My 6 year old daughter has a PDD-NOS diagnosis, which I don't believe fits her properly. I've only just heard of PDA and the more I read the more I feel that it's something I'm going to have to chase up.... (waiting for a call from CAMHS as I type)

My question to anyone who has any experience of PDA is this... Are there any links to soiling? My daughter soils regularly, 4-10 time daily. She had fecal impaction and spent a week in hospital last year. She now take Sodium Picosulfate daily and whilst we can have an occasional good day the majority are bad. She refuses to go to the toilet when she needs to, prefering to soil anywhere, although never while she is sleeping. She fits so many of the other criteria but I can't seem to find anything on toileting being a factor....

 

I'm not sure about links between PDA and soiling specifically, your daughter isn't diagnosed with this but hypothetically I wonder (if this was the case) if the problem could be related to the social demand/expectation to use toilets (and as such the parental demand to do so). If the syndrome is about the person pathologically avoiding demands in an attempt to control situations it wouldn't be inconceivable to use toileting as a means of control.

After all, whether we are diagnosed with a condition or not, toileting is something on a very basic level that we all have a degree of control over.

Also, the fact she doesn't soil at night suggests (to me) that she does have a degree of control over this.

 

I wonder if CAMHS could help you identify the reason she does this (for example: control, attention, a way of expressing herself/other issues, lack of understanding) and come up with methods to enable you to be able to deal with the problem?

 

Out of curiosity.... What do you do when she does this? e.g what do you say, do, how do you act, how does she respond to this?

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Over the last 18 months there's been just about every type of response from myself. everything from totally ignoring the situation (which then bought on wetting herself as well) praise for getting to the toilet on time, Really long talks about it, stickers, reward charts and, I'm afraid to say, losing my temper on the bad days and shouting. :( All have had varied responses but the constant is that something that "seems" to work only has a short life before it starts to fail....

Alix has been discharged from CAMHS, with view to further assessments when she's 8. I've been told that I can contact them at any time but the person who was most helpful is now mysteriously not replying to my calls......

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Over the last 18 months there's been just about every type of response from myself. everything from totally ignoring the situation (which then bought on wetting herself as well) praise for getting to the toilet on time, Really long talks about it, stickers, reward charts and, I'm afraid to say, losing my temper on the bad days and shouting. :( All have had varied responses but the constant is that something that "seems" to work only has a short life before it starts to fail....

Alix has been discharged from CAMHS, with view to further assessments when she's 8. I've been told that I can contact them at any time but the person who was most helpful is now mysteriously not replying to my calls......

 

I wish I had an answer for you, I don't unfortunately and it would be inappropriate to guess. All I can do is shake my head that you aren't getting help with this, as obviously it will become more of an issue as she gets older.

Do you think that you might have an increased chance of dealing with this effectively if you could find out why she does it? It can be difficult for a child that age to express themselves at the best of times so getting to the root of the problem could be challenging - also its hard to understand whether this is a response she has because of a 'syndrome' or a more general response in some kind of way of expressing a problem she has.

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I wish I had an answer for you, I don't unfortunately and it would be inappropriate to guess. All I can do is shake my head that you aren't getting help with this, as obviously it will become more of an issue as she gets older.

Do you think that you might have an increased chance of dealing with this effectively if you could find out why she does it? It can be difficult for a child that age to express themselves at the best of times so getting to the root of the problem could be challenging - also its hard to understand whether this is a response she has because of a 'syndrome' or a more general response in some kind of way of expressing a problem she has.

 

You've hit all the nails that I wonder about on the head. I've been just about everywhere I can for help and the majority was to no avail :wallbash: (it took a year to recognise the fecal impaction, not long after a continence nurse told me she was "stumped" and discharged Al....)

Luckily my CAMHS contact has just got back to me and is on the case. Although she knows very little as its only just been included on any diagnosis system....

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You've hit all the nails that I wonder about on the head. I've been just about everywhere I can for help and the majority was to no avail :wallbash: (it took a year to recognise the fecal impaction, not long after a continence nurse told me she was "stumped" and discharged Al....)

Luckily my CAMHS contact has just got back to me and is on the case. Although she knows very little as its only just been included on any diagnosis system....

 

I am sorry about the futility of this comment but.... I wish you every luck with this, I am in the middle of my own battles with "the system" and understand the sheer frustration of this process especially when it seems that nothing is happening. I don't understand why some people have to fight for everything, I find it really shocking that the differences in quality of services differ so drastically by region and by 'who' you see. Also the level of training differs so much across 'professionals' so that it feels like a hit and miss kind of thing. I hope you can get somewhere with this.

Best

Darkshine

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baddad   

All have had varied responses but the constant is that something that "seems" to work only has a short life before it starts to fail....

 

 

Hi DoA -

 

Quick observation: If something seems to work, even for a short time, it can't be the 'demand' causing the problem...

My guess would be it's more she becomes disinterested in the reward on offer, or after the initial attention of the establishment of a new routine the 'attention' reward either becomes insignificant to her or the 'control' reward of non-compliance becomes more significant. Another possibility would be that you/others monitoring become either relaxed about any sanctions imposed or more casual with the rewards, which would negate the need for her to comply either way.

If you're absolutely certain that it's not medical, and you're absolutely certain that it's not because she can't recognise the body signals telling her she needs to go then I'd just continue with sanctions and rewards and absolute concrete boundaries. The only deviation from that you're likely to get with a PDA diagnosis is a justification for the behaviour (which IMO is unhelpful whether used as a salve for the parents conscience or as an excuse for the child) and the advice that you should proceed with an all carrot no stick regime, which IMO reduces your arsenal by at least 50%, but probably more.

 

PDA is a new term being applied to 'normal' childhood behaviours that have been written about in text books since text books began. Giving it a new name and spin does mean big business for the people adopting /promoting / treating the 'new' condition, but ultimately all they'll be offering is a 'skinny' version of what you can get from Super Nanny for nowt, and a dramatically extended timetable for 'rehabilitation' to boot.

 

HTH

 

L&P

 

BD

 

Oh - PS: Anger is a pretty good behavioural management technique, BTW. Shouting isn't particularly great, but it has it's time and place, and Smacking is defintely something to be avoided, but being disappointed and angry with your children - and letting them know it - is a positive thing, not a negative. It's a form of sanction, and sanctions make kids think about their actions.

Edited by baddad

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all they'll be offering is a 'skinny' version of what you can get from Super Nanny for nowt, and a dramatically extended timetable for 'rehabilitation' to boot.

 

Speaking of Super Nanny..... Saw something related to this in a rerun..... She decided the little girl was doing it for attention (in the sense that the negative attention of scolding, cleaning and changing was still seen as attention by the kid) and as a consequence the kid had to sit in wet pants for a bit (not hours or anything) and the end result was the kid didn't like sitting covered in... ahem **** or **** and consequently stopped.

 

I don't know if this is at all relevant in your Alix's case or whether this method is appropriate or anything.... I've just had a brief look and under a post called toilet training its mentioned:

Link

 

I think that when you do find something that helps, consistency is key - but this is easier said that done sometimes!

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jlp   

I have a 7 year old with a PDA diagnosis who is still not toilet trained. We see a consultant at the hospital about his bowels and he is currently on senna tablets as he refused the movicol and could taste it in anything we tried to sneak it in. When things get bad we do need to do cleanouts with movicol which is unpleasant.

 

I have come to the conclusion that he has genuine bowel problems but that things have got very complicated with the autism and PDA - he is worried about germs which means he doesn't like sitting on the toilet, he doesn't like the cold toilet seat, he doesn't like the control aspect of being told to have a try. I don't know now if his psychological problems with toileting caused the medical problems or the other way around. He has always had problems, we used to laugh when he was a toddler as he could never stand anything on his tummy, even pjs were pushed down to underneath it - now he older we realise this was because his tummy can be very tender.

 

We've tried rewards, we've lost our tempers - especially when it used to be smeared everywhere. Now I do rewards occasionally, they don't really make much difference neither does punishement. Ds has been in tears about his 'problem'. I'm not really comfortable punishing because I'm not totally sure it's 100% behaviour, I think there is a degree of medical problem there too. What if I'm shouting at him about something he really has no control over?

 

If your daughter has been in hospital due to her bowel problems then I'd say even if the problem started as a behavioural issue then there is possibly genuine medical problems now. Bowel problems are very common with children with autism and PDA is a form of autism.

 

We manage now by staying calm, cleaning him up without making an issue and trying to encourage him to at least try a sit on the toilet. For a while I had a reward chart that was a grid of numbers to 50, on random numbers I had pictures of things that were his current interest (sonic etc). He got one star for sitting on the toilet regardless of if he did anything, and another one for managing a poo on the toilet. If this meant he landed on a grid with a picture he got something from the 'lucky box' (little things - sweets, stickers) which kept his interest. When he got to the end he got a prearranged reward. It worked really well for a while but then he started wanting to control what he got and insisting he'd had three poos at school so I stopped it - but for a few months he at least tried. My problem isn't really the soiling, it's trying to get him to go along with the problem's treatment and consequences - he'll refuse to take his medication or to shower or to just try to sit on the toilet. We insist but there's a huge fuss everytime!

 

I haven't been on this forum for a while so am pleased to see there is now a PDA forum.

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I have come to the conclusion that he has genuine bowel problems but that things have got very complicated with the autism and PDA - he is worried about germs which means he doesn't like sitting on the toilet, he doesn't like the cold toilet seat, he doesn't like the control aspect of being told to have a try.

Hello - I'm someone who is good at asking stupid questions ;)

 

Just a thought - and possibly a really stupid one - but have you tried one of them cushioned loo seats - they aren't as hard or as cold as the normal ones - my nan had one before she died and it was a lot warmer to sit on :P (there's also heated loo seats but they cost a bomb - which is why me nan got the cushioned one :lol:)

 

With regard to germs - does he understand about cleaning? You could buy some of those antibacterial wipes and let him see you wipe it before trying him... (if you do try this - don't flush them though or they will block your drain!!!)

 

I can sort of understand why some kids struggle with the whole toilet thing - and it can't help when they have medical conditions either such as bowel problems - I'm not keen on them but they're kinda necessary for most :rolleyes:

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JsMum   

I would contact Nas for further support reguarding the soiling if its related to PDA/ASD.

 

There is a few topics on their website.

 

http://community.autism.org.uk/discussions/health-wellbeing/parents-carers/soiling-issue (Mods remove if not allowed to post this)

 

http://www.autism.org.uk/living-with-autism/understanding-behaviour/toilet-training.aspx

 

Have you also had any support from this foundation

 

http://www.bladderandbowelfoundation.org/

 

also ERIC

 

http://www.eric.org.uk/

 

http://www.eric.org.uk/Constipation/constipation_soiling_leaflets

 

I would contact these for further support also if you have not had any support so far.

 

I dont understand why she was discharged from the contence support services in your area, if CAMHS have discharged her and she is continuing to have difficulties i would request a referal again.

 

It must be very distressing and stressful for you.

 

JsMumx

Edited by JsMum

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Hi dad of Alix

 

My eldest was very difficult to toilet train in the day. I tried leaving him in stuffed full leaking nappies but he didn't even seem to notice! We had to have potties everywhere, including right by his bed at night. Gradually as he got used to using it we moved the potties nearer the bathroom. We got a trainer seat for the toilet and eventually got there, but he was only 3 at the time.

 

My youngest was dry in the day very easily and had great control but pooing was a totally different matter. He just didn't want to do it anywhere. He would hold on for days, he would sit on piles of cushions and be very fidgety and grumpy, but would refuse to admit he needed to go. I tried the new pants (he wouldn't want to get dirty :( ), no joy. Reward charts/sanctions did not work at all no matter how strict we were. It was like he was frightened to go. He ended up in hospital after fainting and being sick several times in a day. They couldn't find a reason but said he was constipated.

 

The thing that started a huge change for the better was the simple thing of getting a new toilet seat. We moved house (he had just turned 6) and there were old pine toilet seats which we didn't like, so we got new, ordinary white ones. He was almost chuffed to be the first one to use the new seat in the downstairs toilet (even at 15 he still always goes downstairs to do a poo!). It wasn't plain sailing, I had to sit with him, it would take him hours and be very painful and he would cry (he has sensory problems which may have been the cause in the first place along with problems with germs - he still can't tell us). Gradually it came to him just telling us he needed to go and when he'd finished. Now he still tells us he's going, but he gets on with it, he always changes his pants after whether he needs to or not (germs?). I have also found having Andrex/Sainsburys toilet wipes available have really helped as he can get him self 'properly' clean. We also use the Palmolive aquarium liquid soap - it is fairly clear, not smelly, and unlike bar soap doesn't get dirty or touched by other people. He also has his own towel in the cloakroom and bathroom. No doubt others will see all this as pandering to his anxieties, but we are helping him live with them until he is old enough to accept help in the form of CBT or whatever. By contrast he won't shower as he read in New Scientist that dirt is good for us (this hasn't worked with toileting or food preparation though :wallbash: ).

 

Aside from all of the above, the fact that ignoring the soiling caused her to wet herself as well does imply to me that there is certainly an element of attention seeking going on (though not necessarily a willful and deliberate course of action). However this may only be a part of the problem and may not be as straightforward to sort out as some think.

 

Good luck!

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I was thinking about PDA at 4am this morning (as you do!).

 

The key difference (in my opinion based on experience) between a child being stubborn/awkward/difficult/naughty/manipulative etc and PDA is that the child will refuse to do something he REALLY REALLY WANTS to do just because you want him to do it, are encouraging him to do it, or trying to use it as a reward, or even when you are threatening to withhold it as a punishment etc. They will in effect 'cut off their nose to spite their face' as they say.

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jlp   

I was thinking about PDA at 4am this morning (as you do!).

 

The key difference (in my opinion based on experience) between a child being stubborn/awkward/difficult/naughty/manipulative etc and PDA is that the child will refuse to do something he REALLY REALLY WANTS to do just because you want him to do it, are encouraging him to do it, or trying to use it as a reward, or even when you are threatening to withhold it as a punishment etc. They will in effect 'cut off their nose to spite their face' as they say.

 

Exactly! We always say that if ds2 was drowning and offered a hand in help he'd refuse it! He genuinely will miss out on things he wants. He spots rewards, psychology and reverse psychology a mile off too!

 

PDA was mentioned with ds1 when he was first diagnosed and I didn't believe that this described him so declined to have it investigated further - he can be very awkward but in a straightforward autism way, ie when something isn't 'right' or doesn't happen the way he thinks it should, ds2 is a seriously different personality and the diagnosis, particularly the 'pathological' bit, fits him perfectly. It's so hard to describe the difference between 'awkward' or 'controlling' and PDA but I'm satisfied that both boys have the correct diagnosis.

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Exactly! We always say that if ds2 was drowning and offered a hand in help he'd refuse it! He genuinely will miss out on things he wants. He spots rewards, psychology and reverse psychology a mile off too!

 

PDA was mentioned with ds1 when he was first diagnosed and I didn't believe that this described him so declined to have it investigated further - he can be very awkward but in a straightforward autism way, ie when something isn't 'right' or doesn't happen the way he thinks it should, ds2 is a seriously different personality and the diagnosis, particularly the 'pathological' bit, fits him perfectly. It's so hard to describe the difference between 'awkward' or 'controlling' and PDA but I'm satisfied that both boys have the correct diagnosis.

 

I think if I had been dx as a child I may well have come under the PDA bracket. The stress and the anxiety caused when someone tells me to do something I am just about to do are so overwhelming that they stop me in my tracks...

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I think if I had been dx as a child I may well have come under the PDA bracket. The stress and the anxiety caused when someone tells me to do something I am just about to do are so overwhelming that they stop me in my tracks...

I find it really stressful or it makes me really angry - quite often if someone says "just do such and such" right at the moment I've stood up to do it - well - I generally over-react and tell 'em to stuff it cuz it makes me so angry/tense - and if its something I'm planning on doing later I quite often really struggle once someone has suggested doing it :rolleyes: (I've always been told its cuz I'm stubborn and immature though...)

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glyno   

hi i hav an 11 yr old who as soiled throughout his childhood,and like u i felt like pulling my hair out j was seen by consultants at the hosp who kept saying he was constipated and the soiling was a over flow.he was treated for yrs with different medication but nothing solved the problem obviously as j became older it became more of a problem,he was 10 yrs old and wud soil whilst at school sumtimes up to 10 times a day and he just didnt care it was like he didnt even realise what was happening ,to cut a long story short after ys of being treated for constipation we were seen by a constipation clinic who were brill they told me what i already knew j wasnt constipated it was all phsycological,because he had the problem for so many yrs j didnt reconise the sensation of needing the loo he also cudnt smell himself either even those them around could.The clinic were brill they came and gave us some ideas we had a reward chart that when he had say 10 stars on he recieved a treat,we had to get him 2 sit on the toilet for 10 mins at a time use a timer so they no how long theyve been there,hot drinking choclate given 1st to encourage his bowels to move,didnt matter if he didnt go just keep trying and stick to the routine.J still as some problems but no where near as bad he will tell me if were out and he needs to go but still refuses to use any toilet but his own unless were on holiday.I still have to clean j up as he finds it impossible he does try sumtimes but ends with toilet being full of tissue and him still in a mess,but i can cope with this after yrs of cleaning him up so many times in a day it didnt happen overnite but within a few weeks things were better,if hed been diagnosed correctly yrs ago things would of been so much better .j as just been diagnosed with asd so maybe thats y it took us so long to get him clean as i do understand that some children do hav this problem.

Edited by glyno

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Sally44   

I don't know how professionals in your area view this as a diagnosis. Some professionals don't think it exists, while others think it is a definate sub-section of an autistic spectrum disorder.

 

The right place to go to for advice, and even a diagnosis if no-one will listen to you or assess and your child, is to get in contact with Sutherland House school in Nottingham. It was Elizabeth Newson, from this school, that put forward the theory of Pathological Demand Avoidance. And they do do assessments. I don't know if, or what, they charge for this.

 

I have spoken to them myself about my own son, and found them very helpful.

 

Anxiety can also play a major role in childrens' behaviour when they have an ASD. So also consider anything that might be causing her anxiety.

 

My son did have some characteristics of PDA, but not the personality profile of it. After some time i've come to the decision that it is not PDA, but major anxiety issues, fear of failure, fear of expectations and outcomes, fear of being in the spotlight.

 

There is also a PDA support group and if you google PDA it should come up. You might find it useful to speak with another parent of a child with PDA - although I presume each child is different, as is the case with an ASD.

 

My son's school do use approaches for PDA for my son to help manage his anxiety.

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Sally44   

The other thing I wanted to add is that soiling can be part of a sensory difficulty such as sensory processing disorder. Senses can be over or under responsive. Or the child may lose body sensation when focused on doing something. It maybe that she cannot feel she needs the toilet. An Occupational Therapist is the person who would assess for SPD, and they have to have completed the modules to be able to assess for this properly. For SPD the child should receive a sensory integration programme, but the NHS do not provide this service.

 

The only way you would get an OT to deliver a sensory integration programme is if you pay for it privately, or you manage to get your child into a school where there are OT's on site that deliver this as part of their therapies. This most likely would be an independent ASD specific school, and you would need to go to an Educational Tribunal and prove that that school was the ONLY one that could meet your child's needs.

 

Does she have other sensory problems eg. appearing deaf or sensitive to certain noise or both. Is she clumsy. Is she touch sensitive and has problems with clothes tags, socks, shoes, brushing hair, cutting nails etc, or does she like to be squashed.

 

You've already identified that she has sensory problems with smell. Does she smell things. What are her eating habits like. Is she a fussy eater, or will she eat anything.

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