I want there to be some sort of intro here but I also don’t know what I want it say. About a couple months ago I (at 41) was diagnosed with Autism Spectrum Disorder, 8 years after an ADHD diagnosis*. Both got missed because I masked so well, and because so many boys with support needs in my family set the golden example for who’s “supposed to be different.” In 2020 my therapist suggested I get assessed and after I got over my initial “I can’t be autistic!” rationalising, I wanted the dx for at least a couple reasons.
There’s more supports I should qualify for now, in addition to my therapist and my county appointed life coach (ARMHS). Getting dx’d as autistic explains so much about me and my life, and I feel way less bad about working so hard at everything and getting nowhere. I don’t have any close autistic friends, but I still feel like I’m part of a group that understands how important a dx is or can be, what kind of background generally comes alongside being autistic, and what it means to be autistic/have that label. It’s nice to know I’m not that different, that I understand way more than people give me credit for, that I’m not Weirdo Town, that I just have a different operating system.
I’ve been researching a lot; reading articles, reading lots of posts in subreddits for autistics, and watching videos made by autistic people. There’s so much information and support that is designed for the parents of autistic kids and at autistic kids, because autistic kids don’t ever grow up you know, or learn to advocate for themselves or anything</sarcasm>. Regardless of who it’s supposed to be for, a lot of it is ignorant and/or abusive, which is frustrating, anxiety-making, and infuriating, at minimum. Media written/created by autistics tend to be more informed and unabusive, but it can take a lot of digging to find that information/support/community.
In our last meeting my life coach suggested I might could be an autistic advocate. I think I already am just by not being ashamed of who I am and being willing to talk about it, but I would like to more actively advocate for autistic people on a larger scale. I bought some books on how to better manage my life and to self-advocate to that end, but I also need time just to process more before I can, I dunno, be a “better autistic?” Except, I suppose it’s just like being loved – you don’t have to know all the things about self-advocating in order to advocate for others, and to deserve others advocating for you. I guess maybe I could find autistic communities and interact, but that feels like a lot too, somehow. I’ve grown so much just in the last year, and in general already feel like I pulled myself to the top of this mountain of introspection, physical/mental illness, assertiveness, and (in)decision.
My TSH finally rose above “normal” (over a year after thyroid antibodies were found), so my endocrinologist put me on synthetic thyroid hormone while saying she didn’t think it would do anything. Spoilers: I feel a bit better, my TSH is over half what it was, and I’m to keep taking the medication. She hasn’t dx’d me with hypothyroidism, though. Some doctor, possibly the doctor who in his first visit with me told me all my symptoms are psychosomatic, dx’d me with Chronic Fatigue Syndrome and didn’t say a damn thing to me about it. The last several years doctors have been incredibly reluctant to dx me with anything, but when they have many of them were wrong. Some of that isn’t their fault, but if I have to jump through 84 “good patient” hoops to get even a wrong dx, shouldn’t there be some more…support from them? It’s not my fault that whatever’s making me ill is apparently unknowable.
I feel like I reached some kind of plateau. There’s more mountain to climb obviously, but I want to rest, or figure some stuff out, or something, you know? It sort of feels like I’ve been resting for ages, but I know that’s not the case. Being chronically ill and/or neurodivergent is a job you don’t get to leave, and being undiagnosed makes it harder. So, I don’t really know what “rest” means right now. Perhaps all the meaning I need will magically appear, along with my own Yoda or fairy godmother to guide me.
* I said “diagnosis” so many times in this it irritates me, but I’mma yeet it into the intervoid anyways ~~
A Vague & Menacing Agency 
Whatcha say?