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lorryw

autistic adults and privacy

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Hi guys,

Well the new day service has started for our lad (now 24, non verbal with challenging behaviour) and we are having a few teething problems. I know you are a very learned and experienced group and would like some help and opinions please.

The staff at the day service have decided that my lad is constipated (he opens his bowels at home every morning0 and feel this has led to a couple of meltdowns. I feel he is anxious and this has resulted in his increasing use of the loo while at day service. The day manager phoned me to discuss this and pointed out they were a day care service not a medical centre. I pointed out that autism and anxiety related stomach problems were common but agreed I would contact our GP. I then had a call from an OT who had visited the centre and had been asked by the staff to contact me to discuss sons bowels. This morning I had a phone call from sons socail worker who had also been contacted to talk to me ablut sons bowels. Later a note arrived home with a suggestion by the behaviour therapist that my sons GP could come and visit him at the day service "to help build a positive relationship between him and my son for times when he needed to be seen by him"

Im cross that so much personal information has been shared with so many with the insinuation that that we are ignoring his health needs. I have arranged an appointment with our GP to discuss the issues with him.

Our son has reached 24 and to be honest has not needed a doctor other than for usual childhood ailments. Most doctors are totally clueless about how to deal with him.

Should I be feeling so cross or am I overreacting. Alao concerned about our sons right to privacy.

 

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Sorry for what I am about to write.

 

 

As I understand it this is where you start to lose parental control and there is very little that you can do about it.

 

I would first make an appointment to go in and see the daycare manager to see if you can reach an agreement. I suspect it is a 'staff convenience' issue rather than a medical issue, but it is the way of institutions. I would guess they want to use enemas on a daily basis.

 

Then I would ask for clarification (in writing) from someone more senior to the daycare manager about whether you can expect support with his care needs whilst using daycare and how many is too many times to need to use the toilet? Hopefully the answer will be that there's no upper limit.

 

That may be enough to sort it out but if it isn't I would get some independent advice about what your rights as a parent are. I know there are changes afoot to give the parental voice more sway but I don't know how far they've got. Mencap are good in my area for exactly this kind of thing.

 

Good luck lorry. We are just a few years behind you and this is something I dread.

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not solely related to your problems but i know that from a social services and often medical point of view 'poo is the answer'. they may well be looking for an excuse/reason to explain away a specific behaviour your son is exhibiting. our foster kids are always constipated, in bad moods and angry. those three things aren't always linked, but the first answer to them is always 'sort out the poo'. if he's already going once a day for a proper go, then i think you can safely rule out constipation. our kids get poo related bad tempers after about 4 days of not going at all! i would make an appointment to get some more detail from them about why they think hes constipated, it might be something that is just a habit of his that they are mis-reading - for example one of our kids would make straining noises on the toilet like they were constipated, but actually she was just having a wee and thought you always had to make that noise!

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Hi there this is very intersting as I am doing adult nursing right now and we are currently discussing when and why information is passed on.I do feel in your case this is wrong as it seems you have not been consulted to give your input,usually when info is passed in this manner it is because the workers feel your son is being neglected in some way,but for bowel movements?this is rediculous.MY opinion I have worked in a care home for all sorts of health problems for seven years and I feel this is bad practise you need to speak to your GP and the head of the day centre.

Good luck.

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I don't know enough about confidentiality of information, or how it is decided to 'share' information and when that is okay to do that and with whom it can be shared. I'm sure others will post about that.

There seems to be a number of issues in your post. The sharing of information and the seeming agreement that there is a constipation issue and finally what they are trying to decide is the solution to the 'problem'.

If your son is going to the loo every day then I don't really see how he is constipated. But I would discuss this with his GP. If he isn't constipated then what exactly is the toileting issue they have. Is he repeatedly going to the toilet and he needs assistance and they feel this is due to some kind of leakage due to a blockage??

What is your feeling about that, and what do you think is behind this frequent visiting the toilet? If it is to do with stress and anxiety, or trying to escape to a different environment etc then that needs to be addressed.

Also how exactly are they planning to give enemas (if that is the intension) to an autistic adult who probably won't understand this invasion and may have lots of other sensory issues going on.

I seem to remember that you posted before about your son being taken out by some daycare workers who didn't appear to have any understanding of your son or autism etc. Therefore I think you would be wise to let everyone know your opinion and what you agree to and what you will not allow to happen with your son.

Maybe a much more graduated approach to being introduced to the daycentre is needed, with there being someone there who is his main contact - sort of like a nominated care worker etc. Can you go along with him to begin with? Do the staff have any experience or training in ASDs. Is training available to them. I would also seek some written assurance that their staff do have experience and will receive on-going training regarding autism - otherwise they simply won't have a clue as to the possible reasons for any of his behaviour. Don't assume anything. Is your son able to give consent himself? If he is not then it might be worth looking into how to be recognised legally as his advocate so that you have the legal right to decide and make choices for him. Then at least all professionals have to defer to you. Without that, now that he is an adult, professionals maybe able to make decisions on his behalf if they feel it is 'in his best interests'. So I would at least find out what the position is.

I don't know if that helps at all.

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My highly verbal 22 AS son had a doctors appointment today. He has been building up to the appointment and stressing about it now since last Friday. On Monday he went to the loo 12 times!!!!!! He is not constipated but stress and anxiety do this to him all of the time. It is actually very frightening how little those who are supposed to understand our children and adults actually do. Not only that how easily they jump to the wrong conclusion and suddenly what they 'think' becomes fact.

 

Here is a link to something that it might well be worth you passing onto not only the Day Care Centre but also your GP http://autismdiva.blogspot.com/2007/04/str...my-trouble.html it will very probably bling them with science but ignorance is not blissful in my experience. Here is a shot quote from the piece

 

'So, if the MIND's cortisol and stress in autism study is indicative of what is going on in most autistic kids (and adults), then we ought to expect to see problems like Irritable Bowel Syndrome in autistic kids (and adults).'

 

Change is a BIG issue for autistic people and maybe if they allow your son to settle in his trips to the loo will settle down as he does. Turning it into a BIG issue is only going to create more stress and anxiety and result in more visits to the loo.

 

At the moment I am a member of the External Reference Group and involved in writing the draft Health Chapter for the up and coming Adults Autism Strategy one thing that is coming through via parents, carers and utistic adults is the impact of metabolic and digestive problems and ASD. It has been included into the draft of the Health Chapter which means that even the Government are now taking this issue seriously.

 

Cat

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Hi Loraine,

 

So sorry to hear you are having these problems. >:D<<'>

 

I agree with Jaded, you do lose control when your offspring becomes an adult.

 

As you know my son has been in an ASD residential placement for over 10 years, they are very good but we still get the odd blip when things go pear shaped and he crashes. The big bonus is they work with us, we just have to flag up a problem and they have a meeting to sort it out, we feel part of the 'team' and feel our voices are heard. I would love to have my lad living nearer to us as he's 4 ½ hours drive away but I worry we would lose the partnership we have. He has a good life, better than we could give him at home or any local assisted living place could give.

 

I have to say most of the problems are due to my son reaction to something they have done or not done and they don't realise his behaviour is not the problem but a way of communicating the problem.

 

I have supported a few parents in the past who are not allowed any input and in some cases have no contact because their offspring refuses it. They are not even told why their offspring doesn't want contact with them or if they understand what it means. I hope this changes sooner rather than later, parents need to have some rights.

 

I'm gobsmacked that the day centre doesn't understand that your lad will react in some way to his new placement, he could display this in many ways including physical signs. I can only suggest you try to work in partnership with them, not always easy but you need to be able to have a voice. It's often the case you have to find evidence to back up what you're saying, or find an ASD expert to give evidence. It's not just for your son's benefit but the benefit of everyone who looks after him. Try hard not to alienate them, let them know you would like to work in partnership with them.

 

I don't know what his rights are to privacy but it sounds as if they have overreacted and brought in everyone, but you have to wonder for whose benefit this is!

 

You could create a folder documenting all your sons needs including his likes and dislikes, medical needs, what works for him and what sort of things would give a negative reaction, try to paint a picture of your son, you know him best. They should be grabbing your input with both hands.

 

I hope you manage to work something out and your GP is helpful.

 

Nellie xx

 

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Hi.I am not working or registered as a nurse now however I was a district nurse and also worked in care of the elderly for many years and so have a lot of bowel experience. :P

If the day care staff say that they are not medically trained then they are not trained or qualified to assess whether a client is constipated.They may think an individual might be constipated however a doctor or nurse would need to do a physical examination to find out.Unless someone has established that constipation is a problem it is pointless involving numerous professionals in offering advice re what to do about it.I expect that an adult would have to give informed consent to a physical examination.If your son is not able to give informed consent then I would expect you to be involved in deciding whether it would be in his best interest.I would not think that conducting any physical examination would be helpful in enabling your son to settle in a new environment.So I would not advocate an examination unless there is good reason to suspect severe constipation.

Having said all of that I think it is positive that the day care centre are communicating with you and attempting to help.I have come across numerous occasions where older people who are unable to communicate their needs have become confused and unwell due to constipation and people have not thought to investigate whether it might be an issue.Karen.

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Thank you all so much for your advice.

The service has been training since November, it is a completely new service. We have spent months having him assessed by various professionals from the local learning disability team. I have tried to be positive and supportive but I have a horrible feeling its a case of the blind leading the blind.

Yesterday he ran off while getting into the taxt to come home. He banged his head on metal raiilings and got on the ground to hit his head on the concrete. We were called to come and collect him, the situation was explained and I was told "dont worry no one was hurt", They obviously meant no one other than my son who had a cut head and huge bump. I hate feeling like the parent from hell but we have campaigned so hard for this. We were told today that he wouldnt be leaving the building because they didnt want to over stimulate him. So he has swapped our 4 walls for another 4 walls, I feel as though I have completely let him down.

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Lorry of course you have'nt let him down . exactly the opposite . thank god he's got you . Can you imagine where he'd be if he didnt ? You've fought for this day service, its not your fault they are ###### ( but trying). I really dont think many people realise that there are barely any services for adults with severe autism and challenging behaviour , x

Edited by lisac

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Lorry,

 

>:D<<'>

 

As Lisa says, you've worked so long and so hard for your son's support - no way have you let him down, but it must be awful to watch the professionals getting it wrong after the hopes you had for this placement. I sense your weariness and frustration.

 

Can't add to the excellent advice given by others, but I hope the centre can listen to you and work with you to try and improve things for your son.

 

K x

Edited by Kathryn

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Loraine >:D<<'> >:D<<'>

 

"dont worry no one was hurt"...........that just sums it up!!

 

You have fought so hard to get your son the support he needs and is entitled to, it's the system that has let him down, not you.

 

Try to hang on in there for a little longer, with your help, knowledge and experience it might just get better.

 

Take care

 

Nellie xx

 

 

 

 

 

 

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You could create a folder documenting all your sons needs including his likes and dislikes, medical needs, what works for him and what sort of things would give a negative reaction, try to paint a picture of your son, you know him best. They should be grabbing your input with both hands.

 

Have you heard of 'Communication Passports'? These are a booklet containing all this information, presented either as a hard copy or on a disc.

 

The idea is that they go with the service user, especially during transitions. Here a few links, but there are loads if you google.

 

http://www.oxtc.co.uk/communicationbook.shtml

 

http://www.communicationpassports.org.uk/Home/index.php

 

http://www.scope.org.uk/earlyyears/docs/comm_passa5.pdf A template for a CP.

 

This might be a way to help the Day Centre understand your son. Apologies if you are already using a Communication Passport.

 

Bid :)

Edited by bid

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>:D<<'> >:D<<'> >:D<<'>

Lorry I have no wisdom to add but do understand how frustrated and sad you must feel.I hope that these are problems at the day centre to do with inexperience and that things will improve for you all.

Karen.

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Interesting, I never knew that, bowel problems being an asd complication for, I have always had them, constipation for days, and the reverse for days. I fouled up my first GCE's because of bowel problems, and hayfever, the anxiety was immense, I was in a cold sweat most of the time, and could not do my best, so I failed. Since then, exams of any kind have been a problem, I always have bowel issues and I wasn't aware anxiety might be the cause.

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