Thread by @DanseurIgnoble

Phone calls don't work for some of us. I have intense difficulty w/ unfamiliar social situations, language-processing difficulties, & other challenges due to ASD. Old trauma is also involved. Phone calls are, for me, an absolute last resort. (A thread.)

#ASD
#ActuallyAutistic

2/ This is why it's so very, very distressing when a tool that worked—the ability to schedule endocrinology appointments via an app, for example—is removed without explanation.

3/ There might be a good reason to remove a system that gives people agency, but not w/o explanation. Not w/o at least a message saying, "Hey,we had to change this because x."

4/ For most people, the scheduling app was a handy tool. For me, it's a lifeline.

5/ I was raised to be hella self-reliant & to overcome my fears by facing them directly. It's extremely difficult to admit that this is about more than fear, and that these are waters I struggle to navigate.6

6/ I was also raised to consider the needs of others, so I'm not saying I can't imagine that things like this aren't need-driven.

7/ But I am willing to say that a lot of the time, it's a question of nobody having thought about those of us who fall into that gap where we appear to be functional adults but we struggle w/ invisible disabilities.8

8/ I can't explain how helpful and important it was to me to be able to access a list of appointment dates (even if they were usually 6 months out at any given time) and select one in circumstances where most of my brain wasn't significantly overtaxed.

9/ I can say that people who don't live with invisible disabilities often can't imagine them, and often don't even realize they exist.

10/ I think we unconsciously imagine disability having a cutoff—we only think of people as disabled if they need a visible device or qualify for a person to help them with basic life tasks

11/ Heck, even I don't always know if I "count"

12/ But I do know that, for me, this is a real and genuine problem, made worse by the fact that when I try to explain it, I'm often met w/ ... not exactly disbelief, but a failure to understand. Sometimes, I'm met w/ derision.

13/ In some ways, yes, I'm a creative, gifted, semi-successful nominal adult. In others, I function below the level of very ordinary 12 yos. Like, a lot of 12 yos can easily call and order a pizza (though they'd prolly rather use an app, too).

14/ Imagine being an adult who can't order a pizza by phone w/o having to first mentally rehearse the entire process, knowing the whole time that if something unexpected happens, you're basically screwed.

15/ Now imagine being that same adult and trying to access health care by phone.

16/ Obviously, there are ppl for whom this is perhaps a more obvious problem (deaf ppl & those who can't speak for whatever reason come to mind, though relay services can help), but shouldn't those of us who are invisible also count?

18/ Anyway, if you've hung in there this long, tx. I'm having a v rough day, and I just needed to get this all out of my head.