Occupation: Girl

Please close the door and switch on the fun without fail.

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msauvage purple
cleolinda
As I just said on Twitter, I keep forgetting that chronic health issues are chronic and that I can't just wait them out. "Oh, I feel like shit today, I'll post/work/exercise once the aches and/or pains and/or anxieties have let up." And then they just... don't, and another four weeks have slipped by. In fact, I'm typing this straight into the "new post" field on my phone because if I try to ~draft~ something, I won't finish it. I wanted to post something, several somethings, more substantial about the last few months, but: ow.

At this point, the best and easiest thing I can think of to do for myself is drink a shit ton of water, healthwise, and try to catch up on some reading, considering that I am specifically in physical pain right now. I feel like there is probably always something you can do for yourself, even if that something is "breathe deep and drink a water."

I have a yearly PCOS checkup scheduled for September, which I think is also when I have my next quarterly med check (for bipolar II, if you do not have my health conditions memorized, she said dryly). You know, I'll go ahead and say--it's a long long story that I don't really know how to start or finish, and so maybe I'm finding reasons to put off more in-depth posts on (subconscious) purpose, but: it seems, based on some preliminary discussion, that I may be on the autism spectrum. I have a referral to a clinical specialist, but I don't think I can afford another doctor's visit right now, or maybe even for 2-3 months.

So it's not an ironclad clinical diagnosis. But it would explain A LOT about my painfully lonely and anxious childhood, why I have panic attacks while trying to drive, problems I have both starting and/or finishing things, and those times when I'm just like "that's it, I'm done, I have lost my will to function, I will be sitting in this corner of the convention hall if you need me." And I know some of these things may be true of many people. But in the preliminary research I started doing, a revelatory preponderance of them turned out to be true of me.

And that's the kind of thing I wanted to post about in depth. Things like how autism can present very differently in girls, how many women aren't diagnosed until adulthood, how (contrary to a lot of stereotypes) empathy overload and high verbal skills can be involved, mirror neurons, how bipolar disorder often overlaps with or is mistaken for autism, intense world theory, executive dysfunction, sensory overload, how Hans Asperger only studied boys, how I'm not sure if Asperger's syndrome is still clinically a thing or if it even reflects what's going on with me but who am I to say that, how I'm not entirely sure if "high-functioning end of the spectrum" is a thing or if that terminology upsets people, how I might be blundering into an existing community, and not knowing the right words and being afraid I don't belong because I don't KNOW for sure, but how it's already helped me a lot to reconsider how I think and feel and function. It has, perhaps contrary to expectation, been a largely positive experience.

Anyway. I think I am stealing my own thunder here because trying to write about Autism, Maybe has been turning into Let Me Slideshow You My Brain. Like, we could be here a while. So. Voilà.

(In keeping with current policy, comments are screened by default. If you would like to comment on this subject in particular but keep it screened, please say so in your comment. I will not be able to answer screened comments, however.)

Won't medicinal marijuana help you with the pain?

That tends to be illegal here in Alabama.

Not sure how to start a comment, because the default empathetic "I'm sorry" is, I think, not applicable here. I am sorry for the unending suck of chronic pain, but I'm not "sorry" about you exploring a diagnosis for a condition you may have, both because you say that it has been a largely positive experience and because you're you and having you in my life has been positive for me.

I am also sorry because as soon as I read "Let Me Slideshow You My Brain", I immediately got an image of Sylar from Heroes doing the "I'd like to see your brain (and put my fingers all over it, like, ew, did you even wash your hands)" thing.

Awww. Yeah, sometimes I just want to be like, "Well! That is certainly a thing going on with you! You just keep on thinging that thing! Unless you don't want to! Thing."

<3

(do we do emojis now? I'm old)

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I have missed you. Sorry you are going thru all this. High-functioning is a thing and I don't think the term is offensive. It makes much more sense than "mild." I didn't know Asperger only studied boys. Girls and women are certainly overlooked on the spectrum. A couple years ago they (DSM) looped Aspergers and PDD-NOS (Pervasive Development Disorder- No Other Symptoms) into ASD and I think it was unfortunate. Nuances of Aspergers and PDD-NOS still hold true. Best wishes in your journey.
Peace,
Denise

Thank you! Yeah, as with a lot of communities, there seems to be some internal disagreement and/or evolution of terminology. I'm kind of trying to tiptoe until I get a better feel for it. I thought I'd read about the DSM-V (?) changing precisely how all that was classified, but wasn't entirely sure.

A (male) colleague of mine is high-functioning. Brilliant, highly verbal, empathetic -- yep, yep, yep. All of the above. So yeah, that could be it. Hoping and praying for less pain for you, and a doctor's visit in the near future.

Aw, thanks. If I can just make myself go out and get a new desk chair, that might hold me until the doctor's appointment.

It has, perhaps contrary to expectation, been a largely positive experience.

As someone who may or may not have Asberger's Syndrome (I was never formally diagnosed, but I have displayed behaviors that sure look a lot like it), I can definitely see that. It puts a name and a label on an unknowable thing that has been part of you all your life. Whether that exact label is correct or not, at least it's something, which is vastly preferable to wondering what the heck is wrong with me. In my experience.

Besides, Asperger's/High Functioning Autism/What Have You can be useful when you are dealing with reams of dry information and facts. And it's not like the whole "having trouble socializing with people" thing means you're never going to be able to get better at it. I've gotten better at it since my ex dragged me (kicking and screaming) out into the wider world, and getting a job that requires me to talk to people a lot (journalism) helped too. So is having people who care, which, in your case, is in no short supply.


The weird thing is that I actually got relatively good at socializing in the right settings--at conventions, I've freely talked to strangers, hugged people I've never met before, done panels, all kinds of things. I tend to clam up if I feel like I'm at a huge disadvantage, like at a party with college friends who all have interesting adult careers and I... don't, and I'm vaguely terrified that's going to come up.

I do wonder what I would have turned out like if I'd had an Asperger's/autism label before now, though. Like, it feels like there's a lot more support for autism now... relatively speaking, I know... but I don't know how I would have been treated as a child in the '80s. I was a squirrelly neurotic mess, but I fully believed that was my own fault? So one hand, having the label might impose lower expectations on you, but not having it leaves you blaming yourself? (I had the same experience when I was diagnosed with chronic depression--relief that things weren't "my fault.") I don't know what the road not taken is like. All I know is, at this point in time, it's allowed me to say, okay, you do have sensory overload and that's not your fault and it's perfectly okay that you need to sit down with a bottle of water for a minute, and then you can go on being the best of you. I hope that's the kind of experience kids going forward can have, rather than the "well you're autistic so of course you'll never be able to do all these things" that I probably would have gotten thirty years ago.

One late-diagnosis autistic person to a (probable) nother, the autistic community (at least online) has been one of the most welcoming places I've ever been. Because of just the things you mention in your post, most autistic people I know are way accepting of things like "I'm not sure" or self-diagnosis or whatever. For most of us, we spent enough time getting things "wrong" for no apparent reason that we don't want to shut out people who could benefit from inclusion.

Anyway my general impression is that whatever terminology you want to use for yourself, go right ahead, it's just that applying it to other people gets iffy. Like no, Asperger's is no longer a separate thing, but a lot of people (including myself) still use it as a way of describing a place on the spectrum. Lots of people don't like the functioning labels because people make it into a dichotomy when it is more of a spectrum, or even a random collection of things that may be useful/functional in some circumstances and less so in others. But I think that's sort of the case in most communities, in my experience: it's your choice of how to describe you, and probably as long as you're acknowledging your choice won't work for everyone you're cool.

And for what it's worth, as a person who has followed your online presence for a long time, I think you being autistic makes a lot of sense. Probably not just because I'm constantly like "one of us" about people. (But woo, other bipolar autistics!)

One of the things that really sold me on the idea of probably being autistic was the idea of fear being a primary emotion. Because I am afraid of like everything all the time, and have explicitly said to people more than once, "What I feel the most is fear." Not literal phobias but this constant ambient anxiety that I'm about to fuck something up. What I *saw* of the autistic community *looked* incredibly welcoming; it's almost a testament to the idea that I probably am autistic that my immediate feeling nonetheless was "I'M GONNA FUCK THIS UP AND THEY'RE GONNA HATE ME." Just constant baseless terror that I'm going to do something "wrong," exactly like you're saying.

I did see that "Aspergirls" was a whole thing (I need to read the book), so I was kind of leery of saying "I don't know that I identify with the concept of Asperger's because it was a study of boys and it's precisely the different presentation that kept me from realizing it." Like, I don't want to take anything away from women who DO identify with that and find community in it, you know? Maybe I WOULD if I knew more about it? So yeah, my instinct is to proceed carefully when a culture already exists, rather than just Kool-Aid Man in.

And for what it's worth, as a person who has followed your online presence for a long time, I think you being autistic makes a lot of sense.

Okay, I am FASCINATED by this, partly because you're not the first person to say that, and partly because it was one of y'all, one of my readers here, who correctly diagnosed me as bipolar rather than unipolar depressive, and otherwise I'm not sure I OR my psych would have figured it out. This time around, I was genuinely surprised when a teacher friend of mine said, "This chart is about autism in girls, I think you need to look at it." (She's on the spectrum too.) Granted, I think partly I didn't see this coming because I didn't have an accurate idea of what it looked like, and if you're also autistic, you'd recognize it in someone else. But what tipped you off, exactly?

I really don't know what to write to support you, I'm not good in supporting people. Just wanted to say that I'm so sorry you're in pain. And that I hope with all my heart , you'll feel better.

Aw, that's good, though. Thank you. :)

Good luck with your diagnosis. Can I just say thank you for being so open with talking about mental health? I remember finding your blog years ago and just being blown away that someone was being so candid, and it really helped fight the stigma for me. This year I finally started seeing a therapist, which led to me starting medication recently. I finally feel a lot better, and you helped pave the way by making mental health stuff not seem so scary. Thank you!

Aw, glad I could help! I kinda needed 2-3 months to process this whole business for myself, but I figured I would get to the "talking about it" point eventually, and it does seem to help.

I suspect I'm in the same category re: autism with many of the same difficulties although I still need a diagnosis, but with the possibility in mind it's helped so much to be able to expect when and how I'll run out of spoons and to be able to say "nope, I'm overloaded, I can't go/have to go home now" versus "WHY AREN'T I HAVING FUN AFTER AN EARLY MORNING AND SIX ACTIVITIES???????"

FWIW I've been hearing from more and more women/trans people/people with atypical autism presentations and it's a very familiar story, so you are/may be in good company. Kintsugi is a nice little community if you're ever looking for people to chat with.

Spoon theory has really, really helped me explain the overload thing to people, particularly my mom. Like I can even get a spoon or two back if I have a bottle of water or five minutes of quiet, but if we plan to do something, I am really rationing out the spoons there and I need to have an idea of what all we're planning to do. You can't just spring an extra five errands on me or I am going to be Done way sooner than I planned. It's not that I'm entirely unspontaneous, I'm happy to change plans or add things sometimes, but it really depends on how many spoons I have at that time.

It's funny, I have been noticing so many more people over the years being diagnosed, both as kids and late in life as adults, that I'm starting to think of the spectrum as something literally everyone is on, and "neurotypical" is just the far end of it. I'm not big on imposing modern diagnoses on historical figures, but there genuinely are a number of people who pretty plainly seem to have been autistic before "autism" was recognized.

I don't have the knowledge necessary to really comment on a lot of this stuff, so I'll just say that I'm thinking good thoughts for you and I hope that your pain eases up soon and you can figure out your diagnosis.

Also, it's really nice to see you back on LJ. (Heck, it's really nice to see anybody back on LJ.)

Heh, sometimes I feel like it's me and the tumbleweeds and George R. R. Martin, but short of the actual service going under, I mean--all my shit is here, it's got a perfectly robust commenting/moderating infrastructure, why would I want to bother getting a real blog now? I just tend to disappear for a few months now and then, is all. I am trying to look into backups/alternates, though, if only because nothing is forever on the internet.

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Thank you for reminding me of that, because I keep meaning to pick that book up. (And thanks!)

Thank you for your willingness to speak openly about these things. I know it helps a lot of people - myself included - to hear about this journey of yours. Good luck with your diagnosis.

Not to get all TMI but I went through something similar (sort of?) with asexuality, where the most valuable thing I learned was, "Look, if labeling yourself as this helps, then great. If not, that's great too. But here are the signs, here's how to cope, so on and so forth." Not quite the same, obviously, but it sure helps in figuring out what's going on by knowing you're not alone.

What I'm saying is, brains are weird.

Right? And don't worry about TMI--I don't even think I ever got around to "P.S. I'm bisexual." But I probably should have? It just never came up, I guess? But hooooo boy did I get to throw out a ton of preconceived notions/expectations when I figured that out. And what you're saying is something I came across--sometimes it really helps to have a label, and sometimes for other things it doesn't help as much. And I guess basically you have to go whichever way seems to help you more at the time.

My daughter is on the spectrum - it's hard, especially for high functioning/Aspies. People don't get that you have a "thing", because you look "normal" -whatever that means.(daughter is 19, but has a maturity level of 8-going-on-40. She NEEDS to carry a plush toy around with her to cope with society.....try explaining that to outsiders!)

I am not a doctor, but you might see if your doc will prescribe one of the many ADHD meds (if you think it might help). Concerts was a godsend to us when she was in public school! (I pulled her out and homeschooled high school, because that was best for her. Mean girls.......she deserved better.)

Good luck - it's tough to come to grips with this. Feel free to PM me if you want - I might be able to point you to help (Aspies can qualify for disability, but it's not an easy process, for example.)

I know that at one point I was diagnosed with chronic depression and ADHD; I can't remember if the ADHD is still accurate or if it was wholly superseded by the diagnosis of bipolar II, which has some overlapping elements. Anyway, I'm on a pretty carefully balanced cocktail of meds at this point going on several years now; I have some issues concentrating, but that's generally during stress or hypomanic periods. I did read that sometimes bipolar disorder is mistaken for autism, but it can also just overlap with it; I tend to think I'm genuinely also bipolar because I have a discernable mood cycle and meds have actually made a huge positive difference.

I may take you up on that, though--I'm assuming I would need a more formal clinical diagnosis for disability, but once I see the specialist, you may be hearing from me.

I would love to read about your experiences insofar as you're comfortable writing about them.

This feels like something I will probably run my mouth about a good bit, heh. At this point, it's just a lot of THOUGHTS to corral, so I'm trying to organize my "research" in a Storify. Although the process of putting it all together is itself kind of revealing--like, no wonder I depend so much on Storify and outlines and "numbered thoughts are organized thoughts."

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