Well, I’m back after my break and ready to finally start blogging more often again! 🙂 My brain still isn’t working quite like it did before the move—I’m still a bit forgetful and foggy at times—but things are definitely getting better. I can tell I’m moving in the right direction! 🙂
The Hidden Toll of Everyday Tasks
Over my break, I spent a lot of time reflecting on just how much energy we autistics have to pour into things that come completely naturally to other people. We face hurdles that others never have to suffer through. Take me, for instance—I have plenty of challenges on my plate right now, but here’s a good example of what happened recently. Right before I moved, I had to undergo an evaluation for sleep apnea. Before the study could start, I needed to pick up the equipment from the clinic. Simple enough, right?
A Warning Sign and a Request for Support
My alarm bells started ringing when I found out the test was going to be done at home using specialized equipment. So, I contacted the clinic beforehand and asked if I could practice setting it up with a nurse at the clinic. They told me I’d be getting written instructions and videos, so an in-person walkthrough wouldn’t be necessary. But once I explained that I have a disability that makes it really hard to process instructions—especially visual ones—they agreed to let me meet with a nurse.
When “Good Enough” Isn’t Enough
The nurse showed me what to do and had me try it once. After that, she considered us done! I tried to explain that I have virtually no procedural memory and would guaranteed forget how to do it the second I got home. She showed me two more times and let me practice again. But after ten minutes, she decided I didn’t need any more repetition because I seemed to get it. I tried telling her that I’d need to try it at least 20 times—if not more—for the muscle memory to actually stick, but she was convinced this was enough.
Doubts and Overthinking
I was still really uncertain, but she assured me she was convinced I’d manage and that everything would go smoothly once I got home. Because she sounded so confident, I assumed she had extensive experience working with cognitive disabilities and could judge how many repetitions I would need. I figured she knew what she was talking about, but since I still had my doubts, I spent my entire bike ride home mentally rehearsing every single step.
Drained Beyond Belief
I was concentrating so hard that I actually managed to get lost on my bike, even though I’ve ridden that exact same route for years! My brain was so completely drained that I literally forgot how to get from Central Station to Gamla Stan. I have a terrible sense of direction, but I never get lost on streets I’ve walked or cycled down countless times. But this time, I had pushed myself so hard that I even lost the ability to navigate streets I’ve known for 25 years!
Failing the Test and Uncovering the Real Problem
When bedtime finally rolled around and it was time to put the equipment on, my worst fears were confirmed. Despite painstakingly reading the instructions and watching the videos, I messed up and couldn’t get the equipment fitted properly. I wondered why the nurse had been so sure I’d handle it, but then it hit me: she probably had zero experience with neurodivergence and likely assumed—just like so many others do—that I barely have a disability at all. Even after draining all my energy into this, I still failed, and now I have to redo the whole test. And what if I mess up again? 🙁
Left Without Support
They’ve rescheduled me for tomorrow, Friday, and the nurse promised to show me one more time. But when I asked for a full hour to practice—so I’d actually have a chance to get enough repetition—they told me the clinic simply doesn’t have the time. If I fail again, I won’t be able to complete the sleep apnea test at all, even though I genuinely need it. To make matters worse, I don’t currently have a support worker who can practice with me either. My regular support worker is out sick, and the sub they sent over lacks any pedagogical sensitivity—she doesn’t even understand why I need to ask questions about things she considers “obvious.” I don’t feel comfortable asking her anything; I need someone who understands why I ask “dumb” questions and why I need repetition and clarity.
Exhausted by the Myth of Support
This isn’t the first time I’ve been forced to realize just how inaccessible healthcare can be for autistic people! Honestly, I should file a formal complaint with an equality ombudsman or anti-discrimination board, but I just don’t have the stamina for it. It would take way too much energy, so I’m letting it go. But I am so tired of people claiming that we autistics get so much support. Sure, some of us get help, but the truth is that very few of us ever get as much support as we actually need!
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