Hospital Appointment

Thank you for the replies. 

Muckworm I did not know you could do that-if I did i wish i had did it before now. obviosly with it being christmas they will be closed or reduced services I expect, so even if I could use a phone I can not imagine them doing much to help me.   Also I did not know you could tell them before you go.  I have another clinic (for a blood problem, sepreate but I assume somehow linked to this heart problem I now have) and they are starting to get the idea that I have ASD and to help me- like they make me go less often than if I did not have ASD and sometimes mum goes and speaks to them without me going (she has the same thing and has been going years, since it is inhereted she can sort it out for me too, I just have to have a blood test at my drs which I am fine with and they talk about the reusult, it is all the waiting and people I do not like there) 

Anyway, it is good to know you have good experience after saying you have ASD-I was planning to tell them soon when I get there, I have a rejustration form to take just annoyingly it does not say about any other condition/disability so I could write ASD, mum might have to tell them when I give them the form. 

Oh, and to everyone just so you are clear it is outpaitines I am going to. At the moment (and I hope not at all!)  I am not in a ward or there overnight or anything, unless they suddenly say I have to or something. Just from mentions of machines or beds maybe it was not clear I am not expecting to have this. 

What hapened to you is not good longman-especally that form. Did they get it sorted out to that you have AS and to find out what it is!?  And now I have a good and bad expereise of other people with AS/ASD and medical people. I am not really sure what to expect now, and will not know wich they are till I get there. 

Thank you for telling me that Explorer. I will try and fill it in and give it to them at my appointment.  Just what is the bit that says what they have responsiblities to do and what ajustments they should make?  Or is they any more information about this somewhere else on the NAS website?

Thank you again for replying to me.
Amy 

Hi Amy, You might find this useful, from the NAS website.  It tells people aout their responsibilities under the Autism Act, so they understand that you have difficulties and that they need to make reasonale adjustments. You tick the boxes about what affects you, because of your ASD.

Passport to individual autism support

It is a simple document that can help healthcare professionals to understand your communication and support needs.

Also a good idea to take someone with you who can better take in the information. They do tend to explain things without appreciating that the patient is not best placed to understand what is being explained.

Also try not to do so much option exploration in your head - following through all the possible permutations, particularly the bad ones, in any situation.

If you are prone to this try to find a way of interrupting this - flick your ear or somewhere else that produces enough discomfort to interrupt the thinking process, then try to apply reality - most of the things you are anticipating may be least likely to happen. Try to give yourself positive options as well as negative ones.

Having said that, yes some health personnel don't seem to understand autism despite all the awareness training that supposedly is going on. And most hospitals seem amazingly oblivious to sources of noise, like those pay-as-you-go TV monitors above your bed that hum and whirr at night, or those personal fridges for keeping patient specific medications that run empty most of the time.

But having someone around regularly can provide an intermediary to communicate needs, and hopefully explaining that you have ASD will be enough to ensure sensitive care.

My lengthy hospital experiences are 2-5 years behind me now, so hopefully things have got better since. But on a premed in 2009 I wrote on the form mild asperger's syndrome. Before the op the anaesthetist kept asking what inhaler I used and seemed unconvinced by my protestation I didn't use one, until they produced my premed form to prove the point. Someone after I'd signed it had scored out asperger's syndrome and written above it "asthma".

Well obviously I was a silly patient who had clearly meant to write asthma. And after all everyone knows what aspergers is, and obviously if the patient could fill in the form, rather than a carer, well obviously its not aspergers. Indeed I kept finding that they assumed I had a carer who could be contacted.

Hi Amy -

Earlier this year I had some problems with my stomach and needed an endoscopy - I am HFA  and the thought of even walking through a hospital door, let alone them doing anything freaked me. I am hyper sensitive to any form of touch, sound light etc.

Anyway, I contacted the hospital before hand and explained I was autistic and they invited me to go the week before to visit the unit and put some things in place for me to cope.

They were super - I could wait in a different room to others, which was low lit and quieter, they were patient and helpful and the procedure went well. When the doctor spoke to me he explained things really well and slowly and kept checking I understood what he was saying.

I think if you can communicate the fact you are on the spectrum it will help - also they allowed me to take someone with me who can calm me if I get wound up (I actually didn't need them but knowing they were there made all the difference). I would do this prior to you attending the appointment.

Communicate with them! If they don't accommodate your needs, report them to the Quality Care Commission people who inspect hospitals. I'm pretty certain legally they have to accommodate your needs if you have an official diagnosis.

Amy - hope all goes well and hope this helps x.