Interacting with doctors is one of my least favorite things to do. But it’s got to be done. I just got a new doctor a few months ago, and I need to meet with her tomorrow and talk her through the aspects of my life that may impact my ability to interact with her, follow her directives, and also factor into her decision-making process. I don’t want to go on record as being autistic / Aspie, because even though I live in a major metropolitan area that’s chock-full of scientists and researchers and great hospitals, there is still a ton of misinformation and really awful assumption that can keep me from being seen / treated as a fully functioning human being, if “Autism” ends up on my medical chart.
I could see this as an opportunity to educate this new doctor about my situation, to bring her up to speed on women and autism, which would be wonderful – if it were even possible. I, however, am simply a new patient who has a long record of inexplicable behaviors which probably got chalked up to “attention-seeking” (healthcare providers of all types apparently love to describe women patients that way), not to mention an extended series of boondoggles into the wilds of trying to figure out what all my maladies are about. Precious few of them showed up on any measurements… thus, I must be “one of those” who’s just a vexation and doesn’t really want to cooperate or comply with the doctor’s orders.
Disclosing my autism assessment last August can open up a whole other can of worms, and this is when I feel at my most disabled — completely incompetent and unable to fully express what’s going on with me in a way that is meaningful and makes sense to the person sitting on the other side of the desk from me.
So, as my anxiety levels spike, and I end up replaying every . single . failed . interaction . with . doctors in my head (not a good use of time, to be honest) I decide, once again, to just work around the subject of autism. Talk about my issues in non-medical, non-DX terms… just naming them as things that make me the unique person I am.
Like most autistic folks, there are a number of significant issues I’ve got with doctors. If this were a drinking game, and you took a sip/shot of your favorite alcoholic beverage every time you you agree with or have experienced something I’m about to say, a lot of us would be dead of alcohol poisoning, I’m sure.
First issue is, of course, all the sensory overload. I have to drive about 45 minutes into the city, where I have to find parking, and then I need to get myself up to the 8th floor, where the offices meander throughout an old former apartment building, filled with scents and lights and people and unfamiliar stuff. It’s a little much.I also shift into non-verbal mode, when I’m under stress, which makes it even more difficult to communicate. Throw in a dash of selective mutism and… Ugh.
Second issue is with eye contact and how it doesn’t mean what a lot of doctors may think it means. It’s not an attempt to avoid interacting with them. It’s an attempt to interact more effectively with them.
Third issue is with processing speed. It’s already a little slower than I’d like (I’ve been tested), and when I’m under pressure, it gets even slower. So, between the non-verbal kick-in and the sensory overload and the mounting anxiety of dealing with someone who literally has life-and-death power over me… my processing can slow to a halt.
I’m getting tired, just thinking about it all. There are even more issues.
But I need to sort this out, figure it out. I’ve messed up so many interactions with doctors in the past, I have no interest in repeating the performance. Plus, I can’t just change doctors every year or so, which is what I was doing, for a while. I need to develop a decent working relationship that’s collaborative — and which makes room for me to collaborate.
So, I’m spending some time today getting a bunch of stuff in writing, so I can take it in and just hand it to her. And have it in my record. I don’t need to make a huge deal out of it, but I do need her to understand certain things about me.
Like: I don’t just act out of fear – especially when it comes to questioning the wisdom of “routine” medical procedures. I actually have logic to back up my decisions, and as a rule I put a lot of thought (and research) into everything I decide.
Like: If I argue with you, it’s not a sign of disrespect. It’s because I take responsibility for my own health and well-being, and that means a lot of active engagement, even if it treads on the toes of authority figures.
Like: All of this is incredibly difficult for me, and if I seem to be difficult, it’s not for lack of trying. I’m probably just getting down on myself for not keeping up.
Then again, do I really want her to know how difficult it is for me? I’m not so sure. That can work against me. The last thing I need, is to be considered incompetent.
Anyway, it’s all food for thought. Keeps me on my toes.
Now, to write up my little missive to her…