Nurses Doctors Hospital Understand ASD?

Post Reply New Topic

SteelMaiden had a post about making a list to give to staff at the hospital while going in for surgery for a day. A list of things that us Spectrum folks don't do or like. This is very important as many NTs do not always know who is on the spectrum or not and you can't just tell by looking.
So to make a list of things would be good and help staff (nurses and doctors) be more knowledgeable about folks on the spectrum.

There have been times that doctors and nurses have not dealt with me properly for their lack of knowledge, and SteelMaiden's idea of making a list for them is brilliant! So many times i have been to the hospital where my mother would end up talking i just remained silent.
Without my wife or someone with me i wouldn't go. That way they can talk to my wife.
I've avoided the dentist for years now as i hate the sensation when they drill. If i try to explain they give me more novacaine. And i kept trying to explain and got 3 novacaine shots yet it isn't the pain i don't want the novacaine it's the sensation they can't rid of. Dentists just don't seem to understand what i am saying. My wife thinks they should knock me out before hand. I am already on Klonopin.

The list would include things such as:

No eye contact/very little
Warnings before being touched
Depending on what is being done, adequate anesthesia/numbing agents
Not expecting the patient to be verbal and make eye contact.
No use of metaphors or figures of speech
Letting us know what they will be doing
Don't mind my stimming
Sensory overload limitations.

These are various ideas that one could list, including some SteelMaiden originally listed.

Yet it's a really good idea, as once in an ER or Hospital the nurses and doctors go at one like they have no boundaries sometimes.

I'm not sure why hospital staff do what they do, and not all are horrible. Yet the last time i went to the hospital it was horrible and then i had to go back since they messed up the 1st time. The 3rd time i went back from the 2nd when they sliced )they numbed for this one) and packed my finger the nurse who wasn't even a doctor (never seen the doctor who overdosed me practicly on antibiotic) just yanked the packing out of my thumb of a hole of flesh and it hurt really bad and i asked to numb it he ignored me. It took immense focus to attempt to get the pain away from that one.

Sometimes i think that alot of us who are adults are grown enough, that other people who are NT don't always think or know we are on the spectrum. We may look "normal" yet unless they are told we are on Autism Spectrum, they might treat us the same as NTs. Then again they might treat us the same anyway and thats disturbing.

I am not entirely sure, I am quite sure a lot of mental health or health professionals in general I have ran into have not quite understood me and may have given advice that would work better for someone without AS or may have misunderstood certain behaviors...but not so sure about the mistreatment.

The the other day a psychiatrist said if I wanted to get better I'd be willing to try more meds or something like that, and though I completely disagree not sure it constitutes mistreatment and I don't think it has much to do with the autism....except if she meant better as in neurotypical with good mental health in which case I wouldn't get 'better' even if my mental health improved.

Well since I scream un control ably when in pain
they learn quickly to deaden any pain.

Doctors are generally rough with me, especially because of my SPD issues (makes me probably a not very pleasant patient to have). Dental hygienists are also the same because of those issues (well most of them), but dentists in general are usually great. Probably because they don't do the cleaning and I've never had a cavity or a tooth pulled.

I remember once my mother told a nurse I had Asperger's. The nurse began to worry a lot for me.

There's been mental health counselors i've seen who are more suited for regular disorders other than the spectrum as well.

As far as regular hospital or ER or dentist visits go, did anyone feel like the nurses and doctors did not understand that you person (especially people of adult age) may suffer from a spectrum disorder?

I guess this would apply mainly if one had to deal with the staff oneself for the most part. It is easier to bring a gf, mother, someone who knows you and understands your conditions and can talk with the staff.

I was never a patient but working in a hospital can be mentally draining because of all the noise and chaos, some of which is unnecessary. When I would transcribe medical records I would listen to dictation from surgeons. The recording station was near the recovery room and people (the employees) would often shout and talk loud. Yet the doctor keeps dictating when I would have told them to Shut the f**k Up! I thought my supervisor might tell the director over there about all this noise because it cannot be good for the patients but no, she wont do that. Sometimes, I have come to work and the women I work with were screaming on phones and it was a chaos bin and I have had to tell them One at a Time!. Even patient floors can be noisy with the staff (more so that the patients who can't do much of anything) yelling and screaming. Why do they allow this?

On my last trip a couple months ago I had a nurse who had family with autism, she was very nice and provided us(mom and I) the quite room to wait in, was very concerned with getting in my space, over stimulating etc. Did not get upset when I gaged on the tounge depresser and bit her hand as I always do. I was in their for what I can only think was a bad case of food poisoning, I know I get very non verbel and fuction very low in situations like hospitals and ill health so she was good to have. For the first 10 or so years of life doctors visits were harder partly becouse we did not know what we were dealing with aspergers, lots of advise and treatment that was useless. Like anything some are better then others and when you find a good one stick with them.

I've met doctors, nurses and dentists who do, and some who don't understand (or accept) what I explain is good and bad with regard to my comfort with things being done. I despise the theory that it's better to "surprise" a patient with a needle or a hose stuck up someplace, as that's exactly the opposite of how I find it. Tell me it's going to hurt, and it's going to hurt bad for a long time, and I'm OK with it. But surprise me, and it's NOT ok. Also, I want a play-by-play explanation of EVERYTHING. I don't care if it's something that I'm "not supposed to understand", and I find it patronizing when it's assumed that I "don't need to know". I'd rather the doctor says "The needle is going to hit the bone in a second, and it'll feel like an electric shock, then it'll feel like pressure when I pull it back and inject (whatever it is). Never had any discomfort or issues at all, when I know what's going on.

Some doctors cooperate, including my dentist of the past 3 years. He is the FIRST ONE I've ever found, who is willing to tell me to brace myself because "this is going to hurt!! !".

Charles