Here’s what I wish my healthcare providers would know – at a bare minimum:
First, I respect you. I absolutely do. Thing is, I’m terrible at reading faces, to begin with. And I don’t really “get” the whole professional interaction thing. I don’t know how to behave with you in ways that indicate my respect and regard. I’m factual. I’m objective. I deal in data. And if you talk to me in terms of what I consider phantasmagorical medical mythology, you will quickly know how little I think of your opinion. But that doesn’t mean I think any less of you. Big distinction. But then, in the 15 minutes I have with you, there’s no time to explain.
If I’m seeing you, I’m probably stressed. I’ve probably been stressed for a while, because I put off seeing you as long as possible, out of dread for what fresh hell will emerge from yet another failed interaction with you. Or maybe I’ve been so stressed, I haven’t been able to detect issues going on with myself. I’m constantly scanning my surroundings. When I’m stressed, I pick up on even more. So, I’ve been so consumed by sorting out my environment, that what’s going on with me doesn’t register. While I’ve been taking care of everything (and everyone) else, I’ve fallen off my own radar.
Just like I’ve fallen off yours.
I don’t ask for much, really. I’m highly self-sufficient. I’m autistic, after all. My system really does work best when I am left alone with my own thoughts and visuals to literally see my way through tough spots. What I do need, is understanding. Respect. A genuine grasp on just how much I’m doing, how much it takes for me to achieve what I do, and the ability of others to not dismiss my difficulties as exaggerations or attempts to get attention. I do not want attention. I want a “sounding board” — an impartial ear from someone who can listen without judging, without jumping in to tell me what I should or should not do, who has a body of knowledge and experience that complements my own and can enhance my understanding of what’s going on.
And I need peace. Quiet. Silence, when I’m not in the thick of things. I’m not pathologically isolating. There’s a reason for this. And it’s a very good reason — because I need to be functional, and this is how I get back to baseline. I need space to decompress, to listen to music, to cry if I need to, to dance around, to flap or tic or stim in ways that make everyone else stare… or just lie in bed mutely immobile. My system needs to right itself, not be hijacked by pharmaceuticals and steered to the destination of your choice.
I need to be allowed to just be who I am and what I am, under challenging circumstances. I’m not asking for a pass that excuses bad behavior. I’m a grown-up. I need to monitor and manage my issues. I need to stay functional in a social manner, whatever that takes. That’s why I’m here. Not for attention. Not for meds. To get help, so I can function better than I am, right now. To keep intact whatever abilities I have and to build on them… hopefully.
I need you to bear with me, when I’m struggling for words, when I’m on sensory overwhelm because of the stress, and I cannot tolerate the overhead lights, the antiseptic smells, the “harmless” physical contact of a hand on my arm. I need to not be medicated, if I’m feeling out of sorts… I will right myself in time, if I’m given the chance. I need to not be over-diagnosed, mis-diagnosed, treated like a hypochondriac because I’m sensitive to things that neurotypical people don’t notice, or that are too subtle to really register on standard tests. I need to be taken seriously, to be treated with respect and regard by clinicians who understand that I really, truly am trying my best, and I want to do better — and I am reaching out to them for help, so that I can do better.
I also need you to understand just how variable my sense of pain and my internal systems are. Sometimes I really hurt myself by slamming into things when I am off balance / my proprioception is way off, but I don’t feel it. And I don’t realize it till later. Sometimes I don’t even realize I got hurt, till I see the bruises. I do NOT need clinicians flagging me as a domestic violence victim risk because I can’t easily explain my bruises. Dude, that’s my sense-of-where-my-body-is-in-space eroding under the environmental stress. Please.
And don’t be putting meds in my system because I’m “all over the map”. That’s one of my biggest fears. I’m so, so sensitive to meds. Even a single Benadryl will screw me up for days. I took some Dramamine before going on a deep sea fishing trip, and it turned me into a zombie on the boat and made it really difficult to drive home afterwards.
Most of all, I need your help. Just because I don’t make eye contact very well, just because I stammer and go silent, just because I debate the merits of your proposed solutions, doesn’t mean I’m any less in need of help.
I’m trying hard.
Harder than you know.