ASD and Hospital

[Nursey]

Hi there everyone,

 

I am a nurse in the UK working in a busy A&E department in a Children's hospital. I am by no means doing "research" as such however, I found this forum and thought it may be a good source of information.

 

We have several schools in our area which cater for children with ASD and Asperger's and inevitably at points some require hospital treatment. I was wondering if anyone had any experiences to share or any suggestions as to how hospitals and nursing staff can make the whole experience better for children with ASD and aspergers who need to come into hospital.

 

Thank you in advance for any comments/suggestions.

[CarerQuie]

One thing which would help is visual symbols on things and to explain what is happening.

 

Some ASD children find language hard to understand but may respond to symbols.xx

[PinkSapphireAngel]

I would agree with that one, also although this might not be so practical being kept waiting around can be a real problem and a meltdown trigger, not sure what could be done about that though.

[Nursey]

I would agree with that one, also although this might not be so practical being kept waiting around can be a real problem and a meltdown trigger, not sure what could be done about that though.

 

The only thing that could be done re: your suggestion would be having people known to be on the AS as a higher triage number, however this is probably not practical and would count as positive discrimination. Many parents would feel upset by this and there is always a risk that children who do NEED to be triaged as higher and seen quicker are overlooked and/or do not receive treatment as promptly as they should. For example, we have a lot of head injuries which can deteriorate quickly...

 

It is a worthy suggestion though, and I have to say, many of the parents/carers are happy with the time frame in which they are seen.

[lindy-lou]

India is going in for surgery soon and what would make things easier for me,is when i tell a nurse my child has aspergers that they dont look at me like i have 2 heads,a bit of understanding of ASD would go a long way in helping i think,Like india over reacting to pain,i cannot imagine how hysterical she is going to be after surgery,I need people to understand why she reacts the way she does and why we need to do things our way.Dont know if that makes sense or not?

[DaisyProudfoot]

Can I just add that many of our children have higher pain thresholds than other children and this is often overlooked so they end up suffering more and often in silence either because they are withdrawn due to the surroundings or just non-verbal.

 

My son went back to hospital three times with a broken leg before they finally believed me and x-rayed him. He ended up in plaster from his hip to his toes for 8 weeks. He was three at the time and had fallen off a log - literally.

[Steve_colour-se7en]

Hello Nursey,

I have a question, are many/most people in A&E aware of conditions like Asperger Syndrome and ASD's as a whole and the possible implications that having an ASD may have on behaviour while attending a visit to a busy and noisey environment. For instance my son has Hyperacusis which will bother him and others with this condition to the point of sensory overload, others are bothered by the extremely bright lighting and smells that go hand in hand with hospitals, again all of these can be contributing factors to a sensory overload. Are there rooms/ areas which can be made available to people with ASD's like relative rooms or are these few and far between. Also the use of a Pecs visual system would be nice for explaining things, as it can be a confusing time for most of us and it would be nice to think of as a standard through all hospitals. It is not, and I do appreciate always possible to cater for everyone, however an ASD child or adult in a complete full blown sensory overload may actually empty the waiting room quicker than anticipated so we can come in handy for getting triage numbers down somewhat <grins>.

 

Steve..

[Viper]

I was at the A&E yesterday with my AS son but he was too out of it to notice what was going on. Overall the hospital was extremely good with the nurses knowing all about AS and taking time to talk to Ben and show him what they were doing before going ahead.

 

I think our kids need to know that they are about to have something shoved in their ear before it is done.

 

On another visit to A&E my as daughter who was about 13 at the time was treated like a complete idiot because she wouldn't answer any questions and my hubby was answering for her. The actual comment made was "can't you speak for yourself?" My husband just said no she can't. I think this kind of thing is unacceptable.

[Nursey]

Hello Nursey,

I have a question, are many/most people in A&E aware of conditions like Asperger Syndrome and ASD's as a whole and the possible implications that having an ASD may have on behaviour while attending a visit to a busy and noisey environment. For instance my son has Hyperacusis which will bother him and others with this condition to the point of sensory overload, others are bothered by the extremely bright lighting and smells that go hand in hand with hospitals, again all of these can be contributing factors to a sensory overload. Are there rooms/ areas which can be made available to people with ASD's like relative rooms or are these few and far between. Also the use of a Pecs visual system would be nice for explaining things, as it can be a confusing time for most of us and it would be nice to think of as a standard through all hospitals. It is not, and I do appreciate always possible to cater for everyone, however an ASD child or adult in a complete full blown sensory overload may actually empty the waiting room quicker than anticipated so we can come in handy for getting triage numbers down somewhat <grins>.

 

Steve..

 

Thank you for your input. I can only speak from the experience I have had in my training in the area of the country I work in.

 

Awareness of ASD and Aspergers...

 

During our training (to become a registered sick children's nurse) we receive a great deal of input and undertake placements with both children and adults with learning disabilities and there is not one person who does not come into contact with children with ASD/Aspergers. Many of us take this even further and apply to do elective placements and undertake further study in the same area. Nurse training is recognising more and more the need to have a good solid knowledge and understanding in this area, and the University I studied at particularly received a good deal of praise for it's decision to do this in out training and it is hoped outher places will follow suit. Unfortunately, it seems some of the "old school" nurses are oblivious and as a result don't be surprised if a student nurse is ever looking after your child. Don't be disappointed or upset by this though - they are probably in better hands with them than a trained member of staff who hasn't a clue what to do! If your child has a care plan of any sorts or a protocol for school, ICP, whatever, it is always of help to us if that can be provided for us to gather more information as we do understand that every child with ASD/Aspergers is different.

 

The use of PECS and images.

 

Mostly, a lot of the parents/carers bring in their own PECS or symbols to use, however I recognise that they could still be put into place in the hospital in key areas. I shall be looking into this further I think and seeing if I can do anything about this where I am.

 

Quiet/Private rooms

 

Again, I can only speak for where I work. Although the hospital I work in is a dedicated children's hospital, it is a very old building, which is short of space and workable facilities. A new hospital is due to be built in the coming years and we have been consulted as to what we would like in addition to what we currently have and one of the things mentioned was a quiet room (Primarily used for giving bad news etc but could be multi-purpose) We currently have 3 cubicles and 3 bays. The cubicles are more private and the doors can be shut and lights turned off etc if required, and I would imagine that wherever possible a child with any hypersensitivity to sound/light etc would take priority when allocating spaces at triage. In a general hospital I can see this not being a reality, as they tend to just have curtained off bays and have little understanding about paediatrics.

[Nursey]

I was at the A&E yesterday with my AS son but he was too out of it to notice what was going on. Overall the hospital was extremely good with the nurses knowing all about AS and taking time to talk to Ben and show him what they were doing before going ahead.

 

I think our kids need to know that they are about to have something shoved in their ear before it is done.

 

On another visit to A&E my as daughter who was about 13 at the time was treated like a complete idiot because she wouldn't answer any questions and my hubby was answering for her. The actual comment made was "can't you speak for yourself?" My husband just said no she can't. I think this kind of thing is unacceptable.

 

I agree, it is important for ANY child to be told what is going to happen before anythign happens and it is something I personally take very seriously. Trust is needed to be gained and the need for honesty is paramount for both child and family. I am sorry that the member of staff you encountered was not understanding. It is however usual for us to attempt to ask the child what happened etc if they are old enough as we constantly have to be aware of child protection issues and what have you. I hope you received some sort of apology from whoever said this to your husband.

[Nursey]

Can I just add that many of our children have higher pain thresholds than other children and this is often overlooked so they end up suffering more and often in silence either because they are withdrawn due to the surroundings or just non-verbal.

 

My son went back to hospital three times with a broken leg before they finally believed me and x-rayed him. He ended up in plaster from his hip to his toes for 8 weeks. He was three at the time and had fallen off a log - literally.

 

We encountered a child with an extremely high pain threshold the other day, who was clearly in pain on arrival, which was a bit of a scary thought! I was not directly involved in his care so I could not say what was wrong in this case, but needless to say he was dosed up on calpol and ibuprofen as soon as he walked through the door!

[jb1964]

Hi Nursey,

 

Can only say like lots of other people have already posted about letting them know what's going to happen etc with procedures.

 

My daughter been to A & E and has stayed in hospital several times over the years. Things that have started her off on her anxieties are:

 

Telling her they're going to do a blood test etc - (she is completely petrified of this but once she is over the inital scare of this and calms back down she accepts it).

 

Then not knowing when they are going to do the blood test etc - usually this takes time and my daughter specifically needs to know when (or at least an estimate - of say before 6pm).

 

I've known her be in hospital for several days - to be told she's going to have tests done later (we have meltdown - and then although she's still scared - she accepts it) - obviously we have the when, when, when - and after several hours the nurse may say 'oh we're going to wait and see now' which she then can't understand because they've told her that they're going to do a test.

 

This has happened with blood tests, urine tests, blood pressure etc etc.

 

Also, we have big problems if say the nurse/doctor/consultant etc says things like 'the area that is painful is where her appendix is' - which caused her to become hysterical thinking that she was having a burst appendix. I think any discussion over a condition needs to be talked to the parents first without the child involved - obviously all children differ and lots of parents may say the reverse - but from our own experience talking about medical conditions etc in front of my daughter has freaked her out (she's 12yrs old).

 

After the results of a barium meal once the consultant said that he may have to put a camera down to have a better look - my daughter got extremely upset - and of course once they reach a certain stage in getting upset nothing you say goes in. We later got from her that she thought it was a 'camera' as in digital camera - in this situation I think it would have been useful to show things rather than explain them.

 

She was also told during a conversation about possibly going on the pill (she hates having her blood pressure taken as she feels like her arm is being squeezed and going to drop off) - that if she was prescribed the pill she would have to get used to that feeling - afterwards she started to get upset and said that she didn't think she would be able to take the pill if it made her feel like that - she thought that when she took the tablet her arm would feel like it was being squeezed.

 

She also had the 'magic' cream put on her hand once which is supposed to numb the area that they put the needle in - she still cried when they did it - saying that it didn't work she still felt the pain (even though they leave it on for 30mins or so) and therefore it was a lie etc - she refused to have it the next time.

 

Also, eating I know used to be a problem with my daughter because she's extremely fussy and although I know that these days the hospital food is quite varied on the kids wards - she still struggled.

 

Medicines - be prepared for projectile vomiting straight after - I can remember several times nurses didn't know whether they needed to give another dose or not - and it's extremely hard to get the second lot in if they think they need another dose.

 

Obviously I think perhaps it would be good for staff to know that if something triggers off anxieties - that they need the child to calm down first before trying to give them any further information.

 

Basically any talking with them needs to be specific to reduce the possibility of them mis-interpreting things.

 

Hope this helps,

Jb

[madme]

Definately to be aware of the pain threshold. My son took an awful lot of to put out for his op which meant that he took ages to come around. When he needed dental treatment the dentist wouldnt listen and he flew out of the chair. They had to give him an adult dose so that he couldnt feel anything.

[CarerQuie]

My son generally doesn't use PECS on a daily basis but might if he were ill.Since I don't require them generally,it would be reassuring to know that they were available at Hospital.xx

[loulou]

Hi Nursey,

 

My son is 7 and had AS and ADHD. He also has chronic asthma and has had major bowel surgery x2. Consequently he has spent alot of time in A+E and in hospital.

 

I would definately say that a quiet area for such children would be excellent. Kai gets total sensory overload in our children's A+E as it is very busy but also very small. Babies screaming really set him off. Thankfully the nurses know him well, so try to take him somewhere more quiet.

 

If possible, a side room is also good for him, as he is much calmer when he is in a quiet place. He also swears alot when he gets stressed, which is not ideal when there are little children around .

 

As others have said, you will need to explain things well in advance (as with all children) and also be very patient. I also agree about the high pain threshold in ASD children. My son had a tumor the size of a grapefruit in his stomach when he was 2, along with severe peritonitis and he was STILL trying to run up and down the corridor in A+E!

 

Finally, i think it's great that you are showing an interest in making hospital visits easier for children with ASD's. Well done

 

Loulou x

[mum22boys]

Hi,

 

Can only go on our past experiences but it is always better for M not to be spoken to directly. He does not like to be asked questions and feels very uneasy if nursing staff try to talk to him. I always explain this to the staff so we don't have a lot of grunts and a tantrum to follow.

 

Also if M needs treatment and it is something i can do (last trip was a cyst on his eye and the nurse showed me how to dress his eye and therefore did not need to go near him) then I would prefer to be shown and get him used to the idea that something needs to be done. Also as an idea M would benefit from being told what treatment was needed and providing it was not too serious then being left 10 minutes or so to digest the info. I understand that can not always be done as an emergency is an emergency!

 

I don't think anything could make the trip completely stress free as unfortunately when we as parents need to take our kids to A&E it is done in a rush and there is little time to prepare them.

 

mum22boys

[lil_me]

Going on lots of previous experience with my son what would have made things better are

 

Dimmer switches, he doesn't like the excessive lights in hospital but hates the dark, or maybe even a few lamps ? as I know hospitals don't like rewiring

 

No excessively noisy toys - as when other kids play with them it can be awful for those sensitive to noise (inc blind children etc)

 

PECS cards in the unit somewhere, last thing I'd consider picking up in an emergency, I have a disc somewhere with loads on if you want it to print some, there are loads of ones on the net you can print free, but I am sure someone in the hospital would be able to elp, maybe a SALT. I would also suggest having makaton as some kids use this, inc children with Down's syndrome etc.

 

Explain things properly, be honest, no point saying 'this won't hurt' when it will as this is why my son doesn't trust any doctors or nurses any more.

 

Listen to parents & expect the unexpected, regardless of a similar diagnosis these children are very different.

 

 

Well done for taking the time to try and make a difference <'>