Missunderstanding and ignorance in emergency health care

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Several people have said to me that I should publish my text about the incident that happened last thursday
and I thought that this is the most relevant place to do that.

It's a bit long but the point of the story is in the detailes so I hope you manage to get through it.

Sumary: I'm autistic and temporarily unable to talk and the doctors make my situation lifetretening couse of ignorance

I woke on wednesday morning unable to use my vocal cords, no idea why they don't work but I was able to visper by the evning.
Thursday morning it didn't work at all again and when I tried to take deep breaths I started to cough but my astmaspray helped make it better.
When I was on my way home from school I saw something that triggerd my PTSD and it got even harder to breathe and right then
my astmaspray decided to break so I could only take very small breaths but I stayed calm.
My fiance was at work and my neighbor(/good friend) was still at school and I thought I shouldn't be at home by self in case
it got worse so I walked to the healthcenter that's very close to my house and I wrote on a note
"Voise broken, out of astmaspray and close to feeling panic"
(I can still only take very short breaths and now bearly standstraight couse of lack of oxygen)
She tells me to go to the waitingroom and goes to get a nurse, she then takes me in to a room and asks for my personnumber,
I write it down and give it to her and she says that I'm not registerd to this healthcenter and then stares at me,
waiting for an answer
I point to the note where it says out of astmaspray so she will understand that I just went to the closest one, she stears
at me for abit longer then goes and get a doctor.
(I am now hanging over the table couse I'm to dizzy to sitt straight)
He sits down and ask what the problem is and I point to my hand (where I have written "voice broken") and then to the note
out of astmaspray, he looks on the computer and says that I have no prescription of any astmamedicin,
I write "2 years", he asks if I got the medicing 2 years ago, I nod, he stares at me then asks if I stole it from a friend.
(I'm bearly getting any air at all)
The nurse says that I should lay on the bed so I can get more air and pats me on the back,
I try to move to the side so she will stop touching me but she doesn't.
I don't want to go to the bed couse if I lay down I know it will only make me cough,
but I have no way of comunicating that and she gets another nurse and they lift me by the arms and I walk with their
help to the bed and sitt on it.
They make me lay down and keep trying to comforting me eventho I keep puching away their hands
(I start to cough alot and getting almost no air).
One nurse asks who she should call and tell that I'm there and she hands me my phone and I show her the number of my neighbor
(he knows abit signlanguage so he would be able to understand me), another nurse is reading on the computer and then she
must have seen my diagnoses couse she vispers autistic and aspergers to the others and now they finaly stop pating me.
A psycologist comes it to the room and everyone else leaves
(My coughs are getting worse and are constand)
she asks if I've had it tough lately and tries to pat me on my arm,
I pull away and she keeps asking questions with a childish voice eventhough it's obvious that I wouldn't be able to answer
even if I wanted to couse they took away the notepad and I'm coughing to violently to be able to talk even if I had a voice.
She goes away and after a couple of minutes they comeback with some calming pill that they want me to take,
I shake my head couse I get manic from those but I can't get them to understand that
they say that I have to take the pill and just stand there stearing so I take it so they won't say that I'm uncooperative.
I cry and sign "call Emil" and the doctor tells the others that I know signlanguage.
Then they put me on a bed with wheels and roll me into an ambulance.
They start taking lots of tests, pating me on my arm, saying that they heard that it had been rough with my boyfriend recently
(absolutly no idea why they think that (or how it could be related)) and talking on the radio saying "intubating" "soon there" "narcosis".
I show I want to write and they give me a notepad
I write "autistic" "no narcosis" and they say okey no narcosis and stop touching and talking to me.
They take me out of the ambulance and in to a room with lots of big machines and about 10 people in it.
they make me get on the bed in the middle of the room and 4 people start putting on things on my arms and taking blood
I try to show that I want to write but nobody responds, about 5 people are just standing there and stearing.
I start to cry (still coughing and not getting any air)
and try to push away their hands and then they try to put on a mask on me
I hit it and try to get out of the bed,
one of the nurses stands right next to the bed so I can't get my legs down and I try to puch him away but he wont budge.
I push away everyones hands and show that I want to write and they give me a notepad
I write "I want my coat" "What are you doing" "whats in the mask",
the doctor says "ofcourse we wont do anything without telling you what we are doing
(ignoring the fact that they've just done atleast 5 things to me without one word directed at me).
The mask contains the same stuff that astmaspray does so I let them put it on
(note that it's now been over an hour sence I asked for astmaspray)
(my stress from them ignoring what I try to comunicate and that I can't control what they are doing has made my
breathing problem far worse then astma-medicin-treatable and my throut is getting very dry from the coughing)
A nurse tries to put in a central line and I try to stop her and a doctor comes and says that he is going to put a camera in
my nose so he can look in my throut
I hit his arm and write that I want to go to the bathroom.
(I would never ever be able to stand anything put trough my nose)
They rolled me to the bathroom after they put anesthetic in my nose
(a long nasal spray that ran down to my trought and made me cough more)
I still cough constantly but I'm getting abit more air so I can go the bathroom by my self and
when I'm finiched I try to go the exit but they wont let me,
I try to take out the central line but they wont let me and I have to go with them back to the room.
There are less people and machines in there now and they make me sitt on the bed but I wont lay down
(I now switch between holding my breath and coughing)
The doctor says he is going to look with the camera in my nose
I hit away his arm
He says that he has to do it so he can help me but I don't respond
They take my bed and roll in trough the hospital (write a text to Emil to come to the nose and ear part)
to a room thats almost empty and the doctor is there with his camera
I get to sitt in the chair in front of him and he says that he has to look so that he can help me and shows how he's
going to do it and I keep looking away on the floor.
He says that he can look in my mouth with a mirror instead and I let him do that.
He tells me to say AAA but I don't even try couse if I could do that I wouldn't even be there.
He tries to listen to my lungs but I can only take one breath about every 10 seconds
A nurse comes in an gives me a mask with adrenalin in it so I will be able to breathe better
I try to take out the central line, the nurse stops me, I do it agein so she removes it.
I take of the mask and go put on my coat (I hold my breath so much that it's just a waste to have it on.)
The nurse makes me sitt in the chair and drink some medicin.
Emil comes in and talks a bit with the doctor, the nurse tells him to convinse me to put on the mask.
I go towards the door, the doctor says that I can't leave yet, at least an hour for observation or at least till I can breat properly
I keep walking to the door and the doctor tells Emil that if it gets bad again I have to come back right away.
It's now been 3 hours from when I first walked in and just wanted one dose of astmamedicin.
I got a prescription of pencilin and cough medicin and neither of those have a chanse at affecting my vocal cords in anyway.

Summary please, or at least an explanation about what this is actually about?

27315: I read through this...it aggravates me to learn yet another story in which an Autie is treated in such an unconducive manner. I regret it happened to you and I hope you're feeling better.

I added a mini sumary

I've almost got my voice back but my throut is still sore from all the coughing that day

Sheesh, are medical people trained to act like idiots? You'd think they would be better about disabilities, but it actually sounds like the exact opposite.

Okay, I see you live in Sweden. So what I will comment on is what would happen in the US.

I would have loved to have seen what your oxygen sats were on room air, but that's for another thread.

If anyone rolls into the State with a life threatening emergency, heart attack, blood sugar at 700+ or the ever popular below 40 mg/DL, status asthmaticus pick your life threatening issue, the ER staff does not have time to mess around dealing with Aspie issues as your life is swirling the down the drain. I would much rather have you alive, pissed off and thinking I am a total b***h, then have me see you brain dead on a vent, waiting for your family to roll in.

There are less than stellar personalities working the ER, but Aspies need to met us half way.
If you have a chronic disease/disorder (seizures, diabetes, food allergies, etc), get a 3x5 card, and write your full name, date of birth, your chronic diseases (if any), medications (doses and how often you take them will make the triage nurse swoon, but do what you can), A FAMILY MEMBER NAME AND PHONE NUMBER THE ER STAFF CAN CALL IF YOU ARE UNABLE TO SPEAK FOR YOURSELF. We will not call Biff, Buffy or the guy down the street., because in the States only immediate family can make decisions for people who can't. Your husband/wife can. Your finance can not. Your life partner of 25 years can't, unless you have a lawyer draw up the paper work. If you are an adult Aspie who doesn't speak to immediately family AT ALL, get to legal aid
/lawyer and have a friend become your Durable Power of Attorney for Health Care Issues. This way the ER staff can call Biff, and by pass your folks.

Also the doctor name and phone number is a nice to have. Put have Aspergers/HFA/Autism on the card too. Laminate that bad boy and toss it in your purse and wallet

Reading the post, the original poster probably had status asthmaticus. That is why the transfered from the clinic via ambulance to the ER. That is why everyone was crawling all over him/her. If you have asthma, "and aren't getting ANY air", that is a life threatening emergency. No little metered dose inhaler of Albuterol/salbutamol/Ventolin (trade name) is going to hack it. Your lungs are shutting down. When oxygen levels drop, people get combative. What the staff was trying to avoid is having your lungs totally constrict and having to tube and bag you. Bagging asthmatics is not fun, as it is a real art. Bag too hard, air gets trapped in the lungs and doesn't go back out. Then it is like bagging a brick. A total nightmare.

Best guess for the endoscope is the doctor was looking for throat swelling, possible foreign body lodged somewhere. We get tons of asthmatics,usually the ENT would do that in the morning. Never saw that in our ER.

Have no clue what the therapist was doing there. If you are on the verge of dying, the last thing I want is a social worker mucking around.

You have the right to know what medications are being given. I have severe drug allergies, and during my asthma attacks, I questioned each an everything that is being pushed/hung up or pill. The medical staff has to tell you.

Being combative with the staff. If you are swirling the drain, and combative, the staff will sedate/restrain you. It might be that nifty Haldol/Ativan/Benadryl combo or actual soft restraints. No one wants to do the soft restraints because it is a huge pain in the ass. The documentation is a mind boggling. But if you need the IV, NG tube etc, and it's all hands and feet in the air, your will get restrained. (needing=you will die without it).

In the States, you have the right to sign out AMA. Against Medical Advice. If we patch you up enough, that you can scoot out on your own power, and don't want to continue treatment, you can sign the AMA forms. It releases the hospital if you drop dead on the sidewalk. Drug addicts and alcoholics do it all the time. Just remember if you have insurance, your visit won't be covered, and you will be liable for entire balance.

While most think the ER staff sucks as humans, remember it's called the emergency room. Not the clinic. Not your family doctor. I work in the Pediatric wing of the ER. There is no glory papoosing a 10 year old ASD. We try everything in our power not to manhandle our patients. But when vital signs are tumbling towards 0, yeah, we aren't going to be as pleasant.

This problem with ER staff is near and dear to my heart. My husband is an Aspie with cardiomyopathy, and I have severe asthma and anaphylatic reactions to food and medications. Been many times to the ER. Have had my share of less than pleasant doctors, nurses and staff.

Glad the original poster is doing better.

Tawaki

Why was she accused of stealing an inhaler?
What was the psychologist and the sedative for?
Why did the psychologist come first, before a doctor or other medical person after the patient mentioned asthma?

hg;cr

Horrific grammar, couldn't read.

I understand. Just because she was nonverbal they at first treated her like whatever was wrong with her was psychological and later had very poor communication with her about the things they were doing and getting her consent on them.

I read the whole post, and they may say we have no empathy but my heart is racing from claustrophobia and lack of air . That's a horrifc story....

I think I can kinda see both sides of the issue here. I'm an Aspie and plan to work a little in emergency medicine i've had some training.

I gather the OP is upset because she ran out of a specific medication and felt if she could just go and grab some more real quick she'd be better and on her way. However being autistic and have comprimised vocal cords she couldn't just walk in and explain that to the staff, which I imagine was very discouraging. And I realize even some of the simpler medical procedures would feel invasive to a more autistic person.

However, like Tawaki above said it did sound like you were having a real respiratory emergency that required some advanced intervention. And not being able to hear your whole explaination they probably assessed you as they would any patient first looking at your airway, breathing, and circulation. Both your airway and therefore your breathing were severely comprimised which is very troubling. By the way you describe your infrequent breaths i'm little surprised they didn't start bagging you, or did they?

But yea my medical knowledge is still limited so maybe just a dose what you wanted would have been fine I don't know. I'm a little surprised no one could sign with you, i've seen a couple nurses and docters do it, just bad luck I suppose

Yeah. They were acting like the OP wasn't a person or something. I think they could have prevented all of this by just making sure they had either a sign language interpreter or that pad of paper available at all times--and actually listened to what the OP said using those things.

Plus, them getting someone with asthma to lie down? Stupid, stupid, stupid. You just don't get as much air if you're lying down. The OP said it made them cough worse to lie down--no wonder. I've had issues like that; not with asthma, but with a nasty influenza/bronchitis combo that resulted in my throat swelling up. Anyone who has had experiences like that knows that it is almost always easier to breathe if you stay propped up. I slept half-sitting just so I wouldn't wake up coughing and gasping, and all I had was bronchitis. If it'd been a full-on asthma attack... Yeah. That's pretty scary.

It wouldn't have slowed them down any to make sure the OP was able to communicate. It would in fact have resulted in more cooperation because the OP would have been able to explain things like, "If I lie down I'll start coughing uncontrollably," or, "I tend to have paradoxical reactions to sedatives."

Sure, it would have been smart to make sure you had a card with your information on it ahead of time; but let's face it, not everybody's going to have a card like that. They need to realize that sometimes there are going to be communication problems, and they need to figure out how to get around it when someone can't talk. They can't just barge on ahead and act like you have nothing to say.

Every emergency room should have a text-to-speech device of some sort--something as simple as a laptop computer, or a dedicated VOCA. Plenty of people are going to come in unable to talk; and that would let them communicate as long as they are literate. Having multiple ways to communicate with a patient could literally save lives, and typing is faster than talking; plus, if there's audible output, people are more likely to pay attention. Pen and paper should of course also be available and close at hand, as well as sign-language interpreters and foreign-language interpreters.

You might think this is overkill; but think about it--communication is probably one of the most important things to establish in the emergency room. I'd go so far as to say it should be a priority in all but the situations in which the person is unconscious or things are going so fast that there isn't time to say anything at all. I don't mean it's the only priority (that would be silly); but it's not something you should be ignoring. In an emergency situation, if you don't have an open line of communication, that could mean you miss crucial life-or-death information. At the very least, it could mean you miss your chance to reassure the patient and tell them what's going on so they don't freak out on you. It doesn't take a genius to understand that if your patient knows what you're doing and why, you're far less likely to have to get a half-dozen people to hold him down so you can do it.

Regarding the sedative--They probably gave that to you so that you wouldn't panic when they used the endoscope to check your airways. People often find it very unpleasant to have things stuck down their throats, and a sedative can help. They should have told you why they were giving you the sedative--not just, "This will help you relax."

I have misunderstanding and ignorance from regualt health care providers. I've had this problem with my joints, epsically my knees ever since birth. If something brushes up against them when they are unbent, I feel like I am going to pass out from pain. My mother always asked the doctors and phycologsts about it and they always just said it was because of the autism. They always suggested stupid "therapies" to try and desentise me that were really more of a tourture session. Brushing and joint compression made it even worse. I would have meltdowns and fight off my mother when she came at me with the brush. She eventualy figured it wasn't worth it. A lot of people don't like chiropracters and alternative health care providers but chiropracters are the only ones who have taken me seriously about the problem with my joints.

I know that all doctors main objective is to keep you alive but my situation was nowhere near lifethretening before they tought the best way to treat an astma attack was to completly ignore what I comunicated, acuse me of stealing and give me a psycologist.

I'm sorry about my spelling, I've got hyperlexia.

They treated the fact that I couldn't talk as a fact that I couldn't comunicate at all
and the fact that I'm autistic as a fact that I have no say or understanding of whats best for my health.

I wanted someone to have any eye on me IN CASE it got worse, but they took in so many different people all running around and ignoring what I know whats best for me and giving me no control at all in whats happening to me so I couldn't keep calm and my instingts changed to intead get away from all people couse I knew that if I could only get a minute to calm down and at least know what was happening I wouldn't have such acute trouble breathing.

The part about the camera is only wrong on my part, and could count as me not understanding whats best for me and acting against their better judgement but the feeling of having
something put up my nose. . . it wasn't an option. And I really felt that they were exagurating the whole situation.

I think I'll try to talk about this with some officials.
To have a signlanguage interpator at all times would be to much to ask
but I think that all working within health care should know to listen more to what the patients say about their own helth then just asume things from how they know they usually are, at least when handling autistic people couse we often don't display symptoms or react to things the way they expect,

Example: 3 years ago I went to the emergencyroom couse of acute and unbearable pain in my stumach and told them it was a 9/10 on the pain scale
and then I was left ib the vaiting room for 10 hours without anypain killers or anything at all and saw lots of others go in and go home and people with less acute injuries who came in after me get patched up and sent home, I got to sitt in a room by my self after 12 hours and met a doctor after 14.
I'm 100% sure that the reason I had to wait so long is couse they saw a teenage girl that wasn't crying or panicing so it couldn't poasibly be as acute as I said it was.

How can you trust that they'll help you when they measure your injuries in your amount of moaning?

That's so terrible. It seems to me that you tried to communicate to the best of your abilities & they were treating you like a child who did something wrong.