I am really struggling

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I am in between two surgeries. I had the first one this past Wednesday and I have the second one tomorrow.

When I had my post op appointment for the first one yesterday, my doctor told me that the surgical staff was angry at me because I was asking questions that "normal people" don't ask as i was trying to understand what they were telling me and because I needed sensory accommodations. They called me a bad and difficult patient because of these things.

I asked her if they had not noticed the Autism on my medical chart. She said that they can all see it but they don't take that into consideration because they don't consider it a medical condition. She also said that they have Autistic patients all the time but not Autistic patients like me whom they can't tell are Autistic by blatantly obvious stereotypical signs. She also said that they are not used to patients who don't just blindly conform without asking questions. She said that because of that, even though they all see that on my chart it says that I am Autistic, because I don't look the part, they expect me to think, speak, act, and respond like a normal neurotypical and if I do anything different than what they expect, they will get angry and call me a bad and difficult patient and complain to me about that and complain to their superiors about.

So, she said that it's my responsibility as an Autistic patient, to understand where they, the surgical team, is coming from, it's my responsibility to understand that they don't actually believe i am Autistic even though my chart and my diagnosis say that I am, and it's my responsibility to have grace on them and to have patience with them and to adjust my responses, my communication, and my behavior to accommodate their needs and their lack of understanding and that i should just understand and give them grace if they treat me with anger and disdain because they don't believe that i am actually Autistic.

They had overwhelmed me so much that I literally started having trouble breathing ten minutes before they wheeled me into the OR. When they assumed that I was just nervous because of the surgery, I told them that wasn't the case. I don't get nervous because of medical procedures. I was losing brain functioning because they had me in a room with no door and I was hearing about thirty conversations at once outside the room and the bright lights from the nurse's station were invading my area. They finally moved me to a sensory safe room. But apparently they complained to my surgeon that they had to do that too.

I am dreading the second procedure tomorrow especially since I have already been branded as a difficult belligerent and problem patient just because they refuse to accept that I am Autistic just because I don't fit the stereotypical mold that they are used to.

I'm so sorry, skibum!! That's just plain wrong on every level, it's completely indefensible, and totally a***hole behavior. I'm headed off to bed soon, so I won't go on right now, but please believe me, I'll be thinking of your tomorrow, and am hoping you'll get a much better team. If any meds make you feel like you might throw up, be sure to aim at the w*kers who mistreated you today!

I wish you a restful night's sleep and a peaceful tomorrow.

Thank you so much.

WTF

Maybe this would interest you:
=>   AASPIRE Healthcare Toolkit
I've been trying to bring it to the attention of my healthcare providers. Plus I give them a printed copy of the toolkit's:
=>  "How Autism Can Affect Healthcare"
Along with a one-page summary of which sections of the document most apply to me, and how.

I wish I could say it has helped though I don't think most of the doctors even bother to read it.

Update

I am having the second surgery today. The ride never showed up. The surgery center called me yesterday because they had had a cancellation. They asked me to change my surgery time from 1pm to 11:30 am. I called the transportation part of my insurance, they told me it was all set and I would have a 10:50am pickup. But the dispatch never changed the time. Then they tried to tell me that the insurance never told them about the time change. So now they are scrambling trying to find a driver. The surgery center said to just get there whenever I get there. But this is stressing me to no end. If the surgery doesn't end up happening today, it changes my entire life schedule for weeks.

Next update:
they found a driver so at least it's happening today

I'm sorry to hear this is happening. I hope the surgery goes well.

That's awful and I'm sorry that you have to deal with all of that on top of having to have surgery. I'm glad the ride for today worked out after all.

I've had occasions when medical personnel in hospitals were just d*cks for no reason. And that wasn't even because of autism. But for instance I was in recovery after a relatively minor surgery and I was really feeling poorly and having a hard time of it and the nurse was angry at me because I wasn't just bouncing back and feeling great. As if I had any control over that? She insisted I had to get up to go use the bathroom and I did but found I couldn't walk because of the pain in my abdomen (where I had the surgery) after just a few steps and had to sit down, and she refused to get me a chair and left me standing there doubled over. So my then-boyfriend who was there grabbed me a chair and she said it was the wrong chair and had him get another one. Then I started making my way back to the bed by dragging the chair bit by bit and she scoffed that that was harder than just walking. Which obviously it wasn't. When she found out I had come in from the ER and it was not a scheduled surgery she softened a tiny bit. But just a bit.

This wasn't nearly as awful as what you went through. I mention it as an example because it was just so unnecessary. It was like she was being a jerk for the sake of it.

I will definitely take a look. Thank you.

Update

Home now! The driver gave them his direct number instead of dispatch since dispatch botched everything up making me two hours late

Night and day difference in how I was treated by the surgical staff today vs. last week. They even gave ma cute little sensory kit with earplugs and a eye mask. They were so much nicer and I was able to help them understand some of the miscommunication we had last time and they were able to learn and they really appreciated me teaching them how Autism can present. Also as soon as I got there, they took me back immediately so there was no wait. I was very happy and even laughing and joking with them. So glad they were able to learn and change. I don't mind people making mistakes. It's just so awesome when they learn and change.

I'm glad to hear you're home and apparently have caused the enlightenment of some doctors.

Some personal experiences:

- I once told the folk in Cardiology I was on the Autism Spectrum and the response I got from one Doctor was they were only interested in my heart, not my brain. I think it registered when I responded that it would affect how we communicated.

- In an Emergency room I did not have my AASPIRE handouts and therefore hadn't gotten across the message that there shouldn't be more than one person talking at a time and...the technician putting the IV port in my arm and the doctor were talking at the same time. Honestly, I really thought the technician said "Try to move your hand", actually he'd said "Try NOT to move your hand"; fortunately, I had another arm he could use for a second try to install an IV port.

- I once told a Neurologist I was on the Autism Spectrum and she snapped back "What! Are you a baby?!" (We think she didn't know adults could be Autistic!) I am now consulting a different Neurologist affiliated with a different hospital.

I'm glad that things went better for you today.

This, squared.

skibum,

I'm so glad things turned out better for you! Your good news is my good news.

I'm sorry that I haven't responded sooner, but I've made several attempts. Some technical something-or-other has kept me from posting anything. All I've gotten for days is error messages.

Thank you for bringing more awareness to the medical community at large. ..Sorry it had to be at your xpense based on your first interaction with your med team