My mom took the photo just as I was about to fall asleep.
For me, in the ER, this is almost a miracle–two hours into the marathon of overload only an ER can create, and I was laying down, not full of anxiety or crying or arguing.
I have had many, many ER visits—we’ll go with a hundred. And I’ve had roughly 35 hospital stays, all since 2012. At this time, my home base hospital is a big city hospital where staff is used to doing whatever they can to move a little faster. They ask questions at the speed of light. They take your blood pressure on one side while drawing labs on the other. They barge in and dash out without ever telling you who they heck they were and what they were doing for you. Or maybe they just needed more paper towels and came to steal some. Sometimes you can’t tell, especially once it’s the 30th time that day.
I go to this hospital because their IR (interventional radiology) department manages my feeding tube as well as my central lines. With devices like that, only the hospital that placed the thing wants to manage any care related to it. I feel safe once I’m down in IR for whatever procedure I need. They know me so well. They know that stitches won’t stay, that I’m allergic to all adhesive, and they know that I need anesthesia sometimes, even if others don’t.
But that ER is the WORST. Loud, fast, chaotic… it turns into a situation where I’m not communicating well, they get angry because of it, I cry, and then I’m really not getting the care I need. In January, I went in with a high fever, and I KNEW I had a central line infection and was becoming septic. The ER doctor all but physically shoved me out their door, and she and another doctor were giving me radically different messages with some twisted pressure something stuff thrown in. Just as they were discharging, they took my temp a final time, “Just so we all feel safe!” according to the nurse. It was 103 again… maybe I should’ve had the long meltdown hours earlier and it’d have saved me all that upset! By the time I had a room, my cultures were already positive and I WAS septic.
Here’s what blows my mind. I have seen this hospital named in multiple articles about ERs and autism. Apparently they know how to care for patients who need things to be slower, quieter, and more predictable. Not the place that had me so panicked the last two times, I was in daily loop mode from the anxiety bout when I’d have to go back. (loop mode–“I don’t want to go back.” “What if I have to go back?” “What will we do when I need to go back?”)
One thing my lovely autism-and-mito life has changed is… me. I do not believe in “it won’t work” or “it isn’t possible.” If it’s not working and it needs to work, I better get it on it and find a way! So I went on a mission. I was going to find a way to get the medical care I need without completely terrorizing me.
In all those articles about the hospital’s understanding of autism, I always saw the same doctor quoted… I may have a word a little off in this, as in, right concept but not perfectly accurate, so I apologize but… as I understand it, he did autism training for the whole ER staff as part of a study. A few years back, I even wrote to the reporter and asked if I might be able to get in touch with him. I’m a great googler and my mom is a great phone caller, so we did find a way to get in touch–but he was out of the country. His assistant said he’d call my mom the next day when he got back. He did, while he was driving home.
He asked to learn more, so I emailed him the next day explaining that sensory overload and constant changes in the instructions or expectations are big issues. That I would do better with both if given time to communicate and a chance to work things out in typing first if needed. He forwarded to my mom the paper he did based on that work in the ER. It has a series of questions about the patient’s unique needs. Really, really good, respectful, this-guy-gets-it questions.
I did have to go back just last month. While I packed my bag, my mom emailed him to say we were coming in. He responded almost right away. He was again out of the country, but he let the Director of Nursing know we were coming.
It was different as soon as we got there. Smaller room, overhead lights turned off. Slower, quieter talking. Explanations. Doctors were taking my words literally and not making assumptions of what I “really” meant. One person at a time. Doctors who sat down and who didn’t block my mom out or only talk to her but not me. And one of my favorite ER nurses ever–as we went to our room, I saw him in the hallway. I said, “Mom! Remember the worst ER day ever? This is the guy who saved the day!” Nearly everything he says is sarcastic. I think. I can’t really tell. Normally that would upset me… but somehow I’m not the least bit threatened. He really truly is like a superhero nurse. He took over after the wretched I-really-was-septic stay, after a nurse who hadn’t been in my room in hours. He did all the things she should’ve done and fixed the errors she’d made in the last 8 hours. He’s never too busy… they pull him this way and that, yet he gets coffee for moms and takes patients to their rooms so they don’t have to wait even longer for transport. He’s a captain in the air force and moving to the VA soon–I’ll miss him when I pop in at AGH, but really, he gives the quality of care our veterans deserve.
And that’s about it. Labs, tests, talks. Medically, we were all confused. I went in because I had been spiking high fevers and had a lot more pain and rapid heart rate. But when I was in the hospital the week before for the same reasons, I got no fevers at all! y blood sugars were running oddly and persistently high (300-400) and my white blood cell count was very very low (2.1).Over the weekend, palliative care did my labs again from home, and they did show possibly infection, so that’s why I went back in. I was still getting all those symptoms on and off. They thought the positive test was an error, yet, I was showing so many signs of infection but no one could find any other signs of where one could be.
Ultimately, the verdict is that my fevers and rapid heart rates are due to progression in my failing autonomic nervous system, which regulates all those things that just happen in your body–temp, heart rate, blood pressure, sweating, digestion… It seems the fevers hit when I’m active, as in, on my feet more than fifteen minutes. The body has to work harder to regulate when standing, and without the energy for cells and organs and systems and bodies to do that, mine fails. At the hospital I get no temp or racing heart, but I am always in bed, leaning back, feet up. It still doesn’t answer all the questions, but… this mito. There will always be tons of unanswered questions.
I am so thrilled that this hospital showed me what’s possible in terms of understanding the challenges that come with autism in the ER. It gives me more hope for everyone else who needs easy but important accommodations. Before, just knowing I’d have to go back was like a big tent of edginess over my days.
Thanks to a doctor who cares so much about the autistic patients no one else in this very medical city has helped yet, I had no tears, no frustrated growling (it’s hard to find a word for the sound I make!), no repetitive questions or panic when my mom had to leave for the night. It just took a darker room, quieter voices, and slowing down a little. I wish the whole medical field could take a step back and realize that treating patients as individuals can be that simple and make this much of a difference.
A little bit after the photo, I actually fell asleep.I guess I had run out of things to stay awake and worry about since the list was so very short
Thank you, thank you, thank you to Dr. V!
NOTE: At this time, the article with the questions I mentioned is only available by purchasing the full text version from an online academic journal, so I can’t share it with everyone. The pink document below is the best I can do for now, and it’s much better than nothing! This is one I did on my own. It’s half sheet when printed, so I have a copy in several places, like my wallet and the bag I take when I go to the hospital. I highly, highly recommend having something down on paper like this. You can copy my format or even whole statements from it if they fit your situation.