Missunderstanding and ignorance in emergency health care

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I'm quiet too but I'm in the US so I think in my case many long emergency room waits are caused by so many people not having insurance and having to use the emergency room as their primary health care provider. I'm one of those people.

When I had appendicitis I had to wait 3 hours in the waiting room just to get in the back. I've heard of US emergency rooms where the average wait is much longer than that.

That was an excellent post, Tawaki. Thank you.

In sweden they call who ever you yourself decide is the best to call in that situation,
I have no family in this city and my fiance would not benn able to help in that situation, I did not ask them to call Biff, Buffy or guy down the street, I asked them to call my closest friend who also would be able to get there within 5minutes
and who also would be able to understand and speak for me.
But they didn't tell him where I was, only "in the health care center", and there is at least 15 of those in my town so it took him 2 hours of calling and running to find me.
I have a card in my wallet that says that I'm autistic and asthmatic and leave me alone or at least keep calm, I should not have to add "if I have trouble breathing, please acuse me of lying about my asthma, treat me as a child and make evrything as chaotic as you can"
I can't have a phonenumber to anyone on it couse it depends very much on the situation who I need them to call.

In Sweden all medical visits and help is free, you don't need insurance or lawyers pressent and that makes a huge difference so I don't quite understand the point of your long post
The central line was only a protocol one with nutrition and I knew I didn't need one of those and I didn't want to be stuck with one so I wouldn't be able to leave.

I now have my voise back and no trouble breathing, thank you

Thank you for taking the time to write them out.

My wife is asthmatic, and she once woke me at about 2AM and could only whisper that she could not breathe and needed to go to the ER. As you have shown in the details of your own recent experience, a clinic is not the correct place to go unless the folks there are already familiar with your case and you are a regular/current patient there.

Once we had arrived at the ER, a nurse could not accept the fact (he could not imagine) that my wife could not move the needle in the breathoscope (or whatever that particular device is called), and he kept trying to get her to blow harder! He eventually "caught on", however, and my wife soon got the mask and the "breathing treatment" she had told me she was needing. My being right there beside her definitely helped in getting the nurse to understand what was going on.

In my own case, I have often had nurses and doctors essentially ignore what I have told them about needing a certain medication or treatment, and then my telling them about my AS/HFA so they will hopefully better understand how I could even know has usually only made matter worse. Overall, I would say you handled yourself very well under some dire circumstances, and I am glad to know you finally got what you actually needed!

Putting this in a US frame (I don't know the Swedish health care system).

Stealing the inhaler. I gather she has been on the inhalers for two years, and the medical people thought she didn't have inhalers for two years, and stole one.
Why that mattered to them is beyond me. We get plenty of asthmatics, for whatever reason, never even buy their inhalers. You can't get high from Ventolin/or the steroid inhalers. Now we do get tweens/teens that abuse OTC cold medications (don't ask), but the person doesn't even fit that demographic.

I guess the staff might have thought originally the poster had a panic attack. Not all severe asthmatics have an audible wheeze when things are hitting the skids. Aspergers=psychiatric disorder=possible panic attack/anxiety attack. Being a clinic, another guess, is they have someone working in mental health services. With the staff seeing someone coughing/can't talk and having respiratory problems, might have been hoping for ponies (panic attack) instead of a run away horse (asthma attack).
Also not all therapists are good with all patients. That therapist might be working with folks dealing with grief and loss issues, and gets hauled in to help with an Asperger patient. Something not even in his/her area of expertise.

Also (being generous to the staff) a therapist IF DONE RIGHT can help a person calm down enough, so you can get information and or with the asthma attack help the person slow down the breathing/panicking. I bet while the therapist was mucking around, the staff was speed dialing the ambulance.

Sedative. For a panic attack Ativan/Xanax would be given here, while the doctor worked up another angle like a heart condition. Sedatives are also given for people who are trashing around that need things like IVs, and other invasive procedures. Some doctors use Benadryl instead of a benzo.

Tawaki

The problem is, an Aspie or Autistic person can hurt themselves and those around them VERY badly, or even fatally, if autism is ignored by medical, police, and fire personnel! A few years ago, a nurse at a hospital here in SoCal was killed accidentally when she was strangled by a little girl who had autism, and was restrained in the ER after an accident. They gave her a sedative, which of course acted the opposite and caused a panic attack, and she broke the restraints and pulled both of her shoulders out of sockets, and then in trying to get out of the room, the nurse was ensnared by the little girl's restraint straps and somehow was killed by either strangulation or hitting her head; I'm not clear on the details.

It is case like that, which CAN AND MUST be avoided by education!! !! !! !! !! !

I am truly terrified of what could happen if I were in the place of that little girl... She was probably 80 lbs, and I'm a 185-lb bodybuilder and powerlifter.

Charles

Reading the OP had me sitting there feeling panicked for them. To put myself in their situation. Sometimes, it just doesn't feel like the healthcare is as good as it should be with it so much generalized, and even some of what people have been taught is not up to date.
I can understand where Tawa was coming from. It would've been frustrating for the nurses and Dr.'s trying to do what they thought was best, but may not have been completely since there was a lack of communication.
Perhaps one of the best medicines for problems in this world is communication. With communication, there is often understanding. The only issue is...so many of us have problems actually DOING the communication.

I've had bad experiences with health care professionals too. One example is that it took them 3 years of me complaining of severe stomach problems to properly be diagnose with IBS. Another time I was at the hospital and they used a procedure that didn't have to be performed at all which ultimately ended in painful bladder damage and a trip back to the hospital. My ability to urinate properly has never been the same since. I wont let them near me to fix it though, not after the neglect and pain they caused in the first place.

Oh I so feel you here. This is why I refuse to go to a hospital unless its a dire and immediate emergency. The thing with me is that I also get extremely nervous at hospitals. My mom is the one who has to speak for me and stuff like that and she does. But the worst part is that they don't understand the autism. They can't comprehend me being 23 years old but having the mind of an eleven year old.

I've had times when I've started crying out of frustration and walking out of a hospital because of how bad the anxiety and panic was. They really don't understand people who are autistic with special needs. It gets me every time. I mean I'm not stupid or a ret*d... I just have trouble with verbal and emotional expression. Not to mention how nervous I get when there is lots of unknown things going around.

Plus having trouble being able to feel pain. I don't respond with 'ow' or 'that hurts' if someone is prodding me. They don't understand this. They just poke and prod me and end up misdiagnosing me with some minor ailment that doesn't even apply to what is going on. My mom can't explain things to them any better... because nurses and doctors are so goddamn ignorant they couldn't tell Autism from a whole in the ground. D:

Do you have any ideas about propotitions that could make a change in theese things?
I'm meeting some officials about this next week so this is a chanse to actually make a change

Any ideas on what to prupose and say are helpfull.

Doctors should be trained to understand physical and psychological stress/discomfort factors for us in a hospital setting. They should not to be quick to perform any procedures "provided it isn't a life threatening situation" without consent, disclosure, and even accommodating communication. An autistic person should have no reason to feel uncomfortable in a hospital setting because staff should be trained to be patient and understanding, not jumping to conclusions based off stress reactions because an Aspie with a health problem is just going to feel naturally stressed. Not feeling understood is just going increase the stress level.

I'm sure if you'd moaned, they'd simply have told you to stop being such a crybaby.

I guess normal people sense they can get away with ignoring us, and behave accordingly, as if by reflex, with no ill will required. This behavior must have been favored by natural selection since the dawn of our species, or it wouldn't be so universal. It's not economical to give a crap about us, instead of focusing on those who really matter, so the ones who did paid the price by failing to pass their genes on to the present.