Going into hospital- advice needed

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Going into hospital for major operation in a couple of weeks, and have to stay in for about a week- and I'm petrified.
I've never stayed in a hospital before and really don't know what to expect.

I just know it's going to cause havoc with my AS- when I saw my consultant last week at the hospital I had a meltdown in the middle of the waiting room when waiting for a blood test. I'm barely sleeping with worrying about it, and I'm really concerned about how I'm going to be when I'm staying there. I'm really scared of hospitals.
All the information I can find about going into hospital is kind of helping, but I am yet to find anything about adults with AS in hopsital, and I haven't found anything on WP yet either.


What I want to know is, if you've had to stay in hospital, what made it more difficult for you (in relation to ASD) and what could have been done to make it easier?
What did you say to doctors/nurses so that you didn't end up in a state of meltdown/shutdown?
What sort of things did you do that helped?
Any advice for someone with communication difficulties when under stress when talking to healthcare people?


This is my list so far (that I'm considering giving to consultant)- please add to it if you can!

- I have communication difficulties when under stress or when I'm anxious- please give me time to talk and to think, and write things down if I need to
- Ask me direct questions
- I have problems with people touching me unexpectedly- please tell me what you're going to do first
- I can't always remember/process things you have said- I may need you to write down important things
- I'm really really anxious about having anaesthetic- what can I do?
- When I'm on the ward, I will need to be in a corner so that I feel comfortable, and so that I am able to sleep better.


Thank you for your help!

Talk to your dr about being able to take an anti anxiety \ sleeping tablet beforehand, to help alleviate anxiety.

I found that not knowing exactly what was going to happen was really stressful. Would it help if your dr explained exactly what was going to happen?:?

I've also discovered that I don't deal well with anaesthetic administered via mouth\gas - I am sensitive to smells and taste, and just inhaling the gas made me have a panic attack. It was terrible.

Good luck....

When I had my hystorectomy back in January, a private room and explicit instructions stating that NO candy stripers, house keepers or med students were allowed. Only my parents and medical staff that was 100% necassary were allowed. They were basicaly instructed to keep me in isolation.

I forget how they knocked me out though but I was knocked out for quite a while. I went home the next day.

I have been advised that being in hospital is deadly boring, so if you expect to be in for a while and awake then take something to occupy your mind such as a pile of books.

This is a very good advice. Maybe some modern stuff will do the job too, like an mp3 player, portable media player.

Some folks complained about the brightness in there, so take sunglasses with you if your eyes are sensitive to bright light.

Generally, I would recommend trusting the doctors and other medical stuff, they are there to help you in the first place. No need to worry about it. Personally I was more afraid of getting a prick than the operation itself, but I got myself over it.

Although this might not be the case for you or any/all others with autism or AS, I am most scared of hurting myself if I wake up in a hospital half-way and find my arms or legs tied up, which they do to prevent pulling out IVs, etc sometimes. I could badly hurt myself accidentally trying to get free. I'd make a SPECIFIC request that they not do that, if you're bothered or panic at restraints. There was a teenage girl who was in an accident, and in the hospital with restraints for setting of a broken leg, or something... She woke up alone in a recovery room, and she hurt herself worse than the accident hurt her, ripping ligaments right off her bones trying to break free. That was a preventable disaster.

I think you'll be fine, and you just have to remember that not everyone understands AS, and you might want to have a printed fact sheet to hand out to any nurses, etc., explaining what the important things are about making an AS patient comfortable in the hospital.

Charles