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Hospital Appointment

Amy

Hello

Hoping to keep this short so will not say a lot of detail about why I have the appointment, but I do.

On 30th Decmber at 2pm I have a appointment at hospital-in a Heart Center to see a specilist.  I do not completly understand what is wrong other than my heart does not as well as it should. the GP does not know any more so had to send me to the specilist.  (its a longer story than that honest) 

So, I have been having a lot of problems and really want to get my heart better so I can exersise and other things again, and not have major issues with standing up or being dizzy and falling over a lot. 

But, I also (ASD related) imagine a lot of problems with acually going to the appointment. New person -may not understand ASD, will end up none verbal, they will not know what is wrong etc.., New place -possible to be noisy, or buzzing no-one else can  hear, or too bright, or too many people, or no-where that I feel able to sit-I am very fussy about seats, confusing things - doctors make things so complicated going too fast and using long words I do not know what they mean, tests - I assume I will need a  few test for them to know what is wrong, like well as long as it is not anything touching me, noisy, bright, etc then im fine! (basically they is no test like that), treatment - i can not swalow tablets, well I do not know what they might want to do but I hope it is not bad. 

I know I need to go, so I can be better and be allowed to do exersise and my breathing problems and chest pains stop. but absolutly anything that can make the whole process at all easier would be amazing. I will definatly be taking sunglasses, ear defenders, something to fidget with and communication cards that I use already. But like anything else to help me to prepare for it or to cope with it would be a big help.

Amy 

Parents

  • 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.

Reply

  • 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.

Children
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