how should hospitals better care for AS patients? HEALTHCARE

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im interested in hearing from people about how hospitals could better accommodate people with AS.

i live in the uk, & had a traumatic experience at a hospital entirely due to my AS.

while the hospital has countless posters offering free translators for people who do speak english, there was no support for autistic patients (classified as a condition with communication dificulties), nor was there any awareness of what it is, or problems autistic patients may encounter.

id be glad to hear from people in ANY country, however~ im trying to draw up a basic list of problems autistic people may encounter in hospital. most issues can be tackled with foresight, or information for staff.
you may PM me if youd prefer.

~for example- i had to book in several hours in advance of an op, to wait in a crowded waiting room. i dislike being around people, & have severe visual overload & visual crowding, so sat on the floor in a corridor. but the waiting room has specially wide chairs for people who are obese.

~i cannot understand many accents well, others are painful to my ears (eg scouse, spanish). i saw a spanish surgeon who raised her voice in anger when i asked to see someone else, politely explaining i couldnt understand her. i have echolalia, asphasia, ADD, & hyperesthesia which makes many noises (inc words or voices) painful. i still had to see her.

~i have severe hyperesthesia, so light touch is painful, & touch on my arms makes me feel sick AND hurts. people kept patting me on my arms. yet hyperesthesia is common in AS, & my medical notes clearly state i have AS.

there are far worse instances too lengthy to enter into; i now have a long term health issue due to a lack of care, all due to their inability to understand what AS is.

there was an excellent article in the NY times last year, where airports recognised the unique needs of autistic travellers, & provided swift movement through ques etc. (google "testing autism and air travel") ~ sorry, im too new to post links.

ANY- ALL- hospitals should have a similar awareness of autism, & strategy.

im not looking for personal stories, just ideas like being seen first thing in the morning, to avoid sitting in a waiting room too long, & a general outline of behaviour staff may encounter with AS patients.

sorry this is so long, and thanks in advance : )

Last edited by tuesday on 09 May 2013, 3:37 pm, edited 1 time in total.

In my case, three things in particular:

* hospitals are full of sensory overload, and it might be good to preferentially offer single rooms to people with sensory hypersensitivities
* researching medical conditions and knowing a lot about medicine as a layperson does not mean I'm a hypochondriac, and even if I were a hypochondriac, that would not be a good excuse to be rude to me
* I take some statements literally, and may respond in unexpected ways, so check that I've understood what you mean

Regarding the Spanish nurse, did you tell her that you have a disability that affects your ability to understand accents? Because racists will often use 'I can't understand them' as an excuse to try to avoid interacting with someone from a different cultural background. If she thought you were racist and trying to make an excuse, that makes her anger a lot more understandable.

My most traumatizing experiences in hospitals have always had to do with having unsuitable room-mates. I had a bad meltdown because of that issue the last time I was in the hospital. I think if at all possible, Auties and Aspies should have their own rooms, or at the very least be put in a room with a very, very quiet person who doesn't get many visitors.
Amelia

thank you both~ i had all of those problems, too! :/

~ettina~ no, i apologised and explained very politely to that i have aspergers, which means i have trouble with auditory processing and communication.
her rudeness is inexcusable, as was her lack of awareness that this is common in AS. her accent- im not sure where its from in spain, is so severe i even set off my synesthesia. english drs dont meltdown when having to deal with someone who has chosen to move the uk but not to learn english- then gets a free interpreter, costing the NHS money.

All those fluorescent lights dont make it easy. At least they are not crowded here like in some countries where 2-4 more people would be in the building.
For lowly populated locales, its impractical to have an aspie designed hospital and trained staff, though large cities could fund an AS friendly, smaller hospital for general admissions.
Taller ceilings, quieter hallways, ear muffs and a glass of wine to waiting patients.....

An outdoor clinic under a tree in a beautiful spot would be nice

I have only been in the hospital a few times but they were ok experiences. I was always in my own room, the nurses were always patient with me and would dim the lights if I asked. I also received my treatment in a pretty timely manner

Luckily, as long as I am not pushed into stress, I can fade out pretty good by portable gaming consoles or books. So waiting rooms or hospital rooms are not as bad as long as I can read. (But it happens to me, that I forget time or dont hear, when they call for me.) Only problem I had where typical misunderstandings of speech and meaning.

thanks~
typical things i have thought of would be asking staff not to pat autistic patients to 'soothe' them, as it can be painful or intrusive, or to ask 'how are you' as small talk.
any other suggestions?

This is EXTREMELY important!! ! I hate having to worry how to politely get out of the way of the approaching hand, as if rabid bat circling my shoulder. Some people accept but do not understand why I don't want to be touched (akin to assaulted), but they abide by my wishes. Others are judgmental and decide on their own, that I need to "loosen up" and learn to love being patted and touched. When they tell me that, I feel like telling them their teeth need to be loosened up by an Asperger's fist, but of course I neither say nor act upon that. I know they mean well, and I appreciate the intent. But please keep the paws off me at all times, unless it's time to do a procedure. Then PLEASE explain what & why, and don't tell me whether or not it will hurt. I'll judge that for myself, and handle it. Lying to me to say that something won't hurt when they darn well know it will, simply causes me to be ill-prepared and surprised, and to wonder if something is going wrong (if it hurts when it's not supposed to, etc).

So I tell doctors that they're welcome to stick a needle anyplace they need to, and tell me exactly how big the needle is, show it to me, and let me watch so I am totally prepared, and all will be fine. I've had probably what many people would consider incredibly painful medical procedures done, and I had NO problem at all tolerating them, or holding still, etc., when my wishes were granted to be informed. I'm told that NTs don't want to know how big a needle is, or see an incision being made on them, and so forth. That's fine for them, but would be abusive if on me, not to make me 100% aware of all of it.

Charles

I don't know what could be done about it, but I tend to have problems, I suppose because of executive dysfunction, not necessarily having the answers to a doctor's or triage nurse's questions handy. Sometimes even if I would normally know the answers I have trouble recalling them when I'm put on the spot, especially if I'm sick.
On the other hand, I run into problems because I've researched the condition already and want to talk about the details, and, like Ettina mentioned, that tends to make doctors think you're a hypochondriac or otherwise get offended.
I'm also bothered by fluorescent lights. After a while they make me very disoriented, dizzy and anxious.

Most hospitals do have dimly lit and designated quiet areas for patients coming into emergency for severe migraine headache. I know this because my older brother has had to go to hospital for that problem in the past. According to his account of it, if patient comes in for migraine headache they immediately move patient to quiet/dark area. I think that doing the same thing for autistic peoples would be helpful.

I definitely agree about the making sure not to touch autistic patients unless necessary for examination purposes.

I live in the US and am a registered nurse in a large Veterans hospital.
I think people on the spectrum really need to be identified upon hospitalization, and nurses should receive education about autism. Because I am also on the spectrum, I know how terrible it can be for an autistic patient to be touched or subjected to loud noises.

I paid someone a visit and found the recirculated air to be stifling. This vents seemed to carry some fumes of disinfectant. Very claustrophobic. This happens if they're carrying a contagious disease. Other rooms would allow you top open windows. What would be nice is fresh air, maybe disinfected on the way out, instead of the sensation of huffing something mildly alcoholic.

Also, the displays don't strictly have to be flashing and making noise, the whole time, especially as people are trying to sleep or talk. In theory, a night time button might be simple and intuitive, could be overrided if something anomalous happens.

The hospital branches in my area are already pretty accommodating to autistics. All I have to do is specify my diagnosis when I enter the hospital, and they'll come up with well trained staff. That was what helped my recent ambulance ride, when the paramedics were told that I was autistic. They immediately asked me if I was nauseous and started an iv.

when I was an inpatient last august, I told the staff that I was on the spectrum and I was treated very well by them. I got adequate pain relief and relative freedom from overstimulation [a room to myself was a BIG HELP!]. I got to keep the shades drawn and the fan running [I needed the soft thrumming brown noise in the background to block out unpleasant hospital noises [beeping machines, screaming patients, et al]. my surgeon was sensitive to my needs as well. my only complain was the humongous bill I got later.