im interested in hearing from people about how hospitals could better accommodate people with AS. i had a traumatic experience at a hospital entirely due to my AS, recieved sub standard care, and now have long term health issues- all due to the lack of knowledge of the staff with whom i dealt. i have to have the op all over again, with it's lengthy recovery. while the hospital has countless posters offering free translators for people who do speak english, there was no support for autistic patients (classified by the NHS as a long term condition with communication dificulties), nor was there any awareness of what it is, or problems autistic patients may encounter.
the referral letter states i have AS, and i introduce myself to staff as having it. it made no difference. im trying to draw up a basic list of problems autistic people may encounter in hospital. most issues can be tackled with foresight, & better awareness amongst staff. ~for example- i had to book in at 10 am, sit in a crowded waiting room, until an op at 4pm. i dislike being around people, & have *severe* visual overload & visual crowding, so sat on the floor in a corridor. staff were dismissive of me when i asked for help. 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. she spoke to me with unconcealed anger. ~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 to 'calm me down'. yet hyperesthesia is common in AS, & my medical notes clearly state i have AS. when i eventually told someone to F off for doing it, i got the outraged 'you are UNACCEPTABLY RUDE' glares. but it hurts me, i find it hard to speak sometimes, im embaressed to explain things~ and was clearly giving off very uncomfortable facial expressions. i couldnt express myself well enough prior to taht to explain what hyperesthesia is, and know rom prior experiance that people generally think one is anyway, simply being rude, neurotic, attention seeking, blah blah blah. 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")
ALL hospitals should have a similar awareness of autism, & strategy for ASD patients.
i did not encounter any awareness, yet this is a major, new, teaching hospital. it's neurology dept does internationally recognised, and groundbreaking research into AS. sadly, this is not reflected in the hospital. some staff had never heard of aspergers or autism when i mentioned it, one spoke to me as though i was a sub normal child :/
i was regarded as ~racist (when i asked to see an english dr because i cant understand some foreign accents, though the hospital has no prob;em with people who choose to live in england and not speak english),
~fussy (when i asked if there was a bed in a quieter position~ to recover from an op, i'd been placed opposite the doors to the ward & nurses' station- im painfullly sensative to noise and visual movement),
~selfish when i asked for an early appointment (because i cant wait in waiting rooms) etc
and staff made their disapproval very clear to me. at best i was spoken to as though i am of sub normal intelligence. i am not. do you have any ideas of basic standards youd like to see? NICE and the dept of health are in consultation atm, so it seems a good time to raise this. sorry this is so long, and thanks in advance : )
