Take a deep breath

I remember when I really learned how to handle my emotions. As in, the point when I was able to figure out how not to burst into tears over a stubbed toe. Before, I was prone to bursting into tears at these (relatively) small things.While I would burst into tears at minor injuries, I knew that I shouldn’t be upset. I knew it was a small injury and not a big thing. I knew that it would stop hurting soon. I just couldn’t stop myself from crumpling and crying. But then at some point, it just clicked. I was able to take a deep breath and walk it off. And after a few seconds, the stubbed toe or the skinned knee didn’t hurt any more and I was fine.

Part of the reason I remember this so well is because it definitely didn’t really develop until I was in college.

I still don’t really know why or how this change happened. I just know that all of a sudden, I was able to take that deep breath and pause for a second with a stubbed toe. And really, once you can do that, it makes it hurt so much less.

But before that, every time that someone told me to calm down, it didn’t work. When people told me to take a deep breath, to walk things off, it did not make any sense. I literally could not comprehend what people were saying or how it made any sense. I just didn’t have the tools in my brain to take a breath and make things stop hurting.

Some things just take time. Some things just happen late. Some things will probably never happen.

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Autistic Wedding Planning

Image is of an engagement ring with a blue stone. I have doodled around it and wrote the word plan underneath it.
Hi everyone! So there aren’t very many resources for planning a wedding if you are autistic. Like none. Google gives you pretty much nothing. And since I’m actively involved in this, it’s something I’m thinking about. And it was really becoming rather frustrating and leading to general panicky life issues. So I wrote a question/submission thing to a wedding planning website/other life things that I’m a big fan of just in general (like really, though, I like A Practical Wedding and actually was reading it for discussions of life stuff occasionally before I even started thinking about weddings… like years ago). And they also decided to print/answer it. (And also had helpful, specific answers to things I was individually concerned of.
So that’s pretty awesome. Anyway, if you want to read it…

Also, they were super cool in the editing process about changing things they wrote about “a person with autism” to “an autistic person” and also about changing the link for more general autism information from Autism Speaks to ASAN when I brought that up. So added points for that.

Autistic People and Imagination

When they say autistic people don’t have imagination and don’t engage in imaginative play, what do they mean? I knew I had imagination, and that was one of the biggest things holding me back from thinking I could be autistic, because that was something always stated and listed and formalized. Autistic people don’t have imagination.

I never really was into playing school or house, like other kids were (why would you be a grown-up when you could be a HORSE?). But I would play all sorts of imaginative games with my cousins and my sister and myself.

I played Orphan Kittens. We played all sorts of games with our stuffed animals and model horses. Admittedly, we often wrote out the scripts before and they were usually similar patterns that happened… but that is a trait common to children. (You notice it when you babysit or have younger siblings or really just encounter things like that).

We played Lord of the Rings and went on quests where grapefruits or a pomegranate were palantir. There was a game where we were princesses that also involved horses and we would switch roles between them back and forth. We also played a lot of complicated games involving chickens and occasionally my cousin’s goat which we were all afraid of, but those were not always imaginative games–I don’t really remember the point of them, so they are a bit irrelevant.

In 4th grade, I made snail houses and fairy houses and for one brief moment, I was a trendsetter when everyone else in 4th grade also made “fairy friends”. (Although I was a bit upset that they treated it as a game, because I at least half–probably more–believed in it). I played games where the swings were the way to outer space and the only way back was to go down the slides. I was good at coming up with games and stories, so as long as everyone else was still young enough to play stories and pretend at lunch, I had company. They grew out of it earlier, so I switched to books.

And I lived in stories and books (and still do) despite the best efforts of literature analysis to beat that love out of me. And I still half-live in a world of stories, although I read much less than my high school minimum of a book a day. (I have a lot more reading to do of other materials than I did in high school.) (Also, I don’t like going new places myself which is why I haven’t been yet to the [non-campus] library even though I love libraries.)

Anyway, on any given day, I’m about 80% sure I’m autistic and I’ve had official professional people agree with me, so I just wanted to summarize this to say that autistic people can be creative too and that is a silly requirement to say they can’t.

Balloons

Growing up, we had a two-story-height roof in a mostly 1 story room, and balloons would escape and just float up to the roof, unreachable but still visible if you looked up. Even the adults couldn’t catch them, because even my parents didn’t have thirty-foot long arms. The balloons would just sit there for days, above our couch and our table and our living room. Eventually, they would float back down to the ground, but by then they would be sad-shriveled-not-floating balloons. The fun was in the floating and the bobbing and the magical-THIS-BALLOON-IS-FLYING.

That’s where all my thoughts and ideas are. I forgot to hold on to them or I miss the chance and they float away up to the ceiling. They are there, but by the time they come back to me, they are sad and are missing the parts that I was interested in. I miss posting things on here and figuring them out by writing about them. I figure so many more things out by writing them, but I keep missing the chance to grab them. There are tons of half-floating ideas that I think of when I am biking to school or walking to the bus or somewhere else. They are half-remembered ideas just out of reach and it’s frustrating.

  • I have ideas about sensory overload and spoons on crowded buses home, but then I am too tired to write them down, and they float back up to the ceiling.
  • I have a half-developed theory on my ideas and thoughts on Appropriate Social Behavior and eye contact and my semi-autistic family.
  • There’s something I remember on my bike half a mile into the trip about keeping Bad Thoughts Out.
  • There’s something about executive function and what bits and pieces I have and what bits and pieces are broken.
  • Some more bits about thinking in general.
  • There are other ideas there, too far away to work out what they were, but they are still there, hitting up against the top of the roof, bobbling around in my brain. 

I can tell they are there, but I can’t tell what they are. I want to be able to reach out and pull them down and figure them out. I want to classify  my thoughts and order them out so I can figure out how and what I’m thinking. And whenever I succeed in grabbing them, they are only half-there. It’s the sad old not-flying balloons. The essential part that made them good and interesting and desireable has diffused out.

I’m doing fine, generally, in life, but busy with TAing and actual lab work and grant writing and literature reviewing and wedding planning, and I just don’t have the tools available now to reach up and pull down those thoughts. I want to be able to figure out how to grab onto them right away so they can’t escape to the roof immediately, to take them and run to my normal-sized-roof room right away, where even 5 year old me can reach the string of the balloon if I stand on a chair. But I don’t have thirty-foot-long arms to reach the ones on the ceilings, and they always appear when I can’t grab onto them. It’s a minor annoyance. I don’t need balloons. I can get along fine without them. But they make life better and I want them.

Creating my own standards

This is not relevant to this article, but it was one of the earliest images that popped up when I googled the title of this post looking for a good image. And I really do love xkcd, and I didn’t come up with a better image for this, and I prefer to have images in my posts, so I am sticking with it. Because it’s always good to have a bit of fun in there. 

 I’ve been struggling a lot lately, with prelims and lab choosing and moving and a million pieces of life (which is why I haven’t written much in August). Errands and jobs and tasks that require communication and planning and new skill sets. There is the constant low level anxiety about being in a new place right now, which uses up spoons just existing until I get adjusted into life here.

And I’ve been trying to keep up with graduate school and doing my best and trying to make a good impression so that people like me and let me into programs. And maybe I have been trying my hardest and maybe what I have been is good enough.

Or maybe it isn’t. I sort of think that I should be trying harder. Trying to improve myself and be better. There are always things I need to work on.

Today I read this (emphasis mine):

“I feel as though many of our autistic kids can never escape from this idea that they must always be being corrected; must always be being taught; must always be building on skills; must always be attending therapies and classes; must always be being “consistently disciplined”; must always remember every second of every day that they are autistic and that they have so much to learn, so far to go, so much more that they need to be.”

~“Are We Trying To Hard To Teach Our Autistic Children”, Suburban Autistics (Also read the rest of the article, it’s great!)

There are so many things I need to work on. I identify a new area where I struggle when talking with boyfriend and he says “ok, we can work on that”. But if we add up all the things that “we can work on” then I don’t know how I have any time in the day to actual get my work done*. I can’t always be working on not panicking or working on not hiding my face or working on one of the million other things I struggle with that are things that need to be done to be professional and successful and effective at communicating and get things done.

And then I get overwhelmed by the amount of things I have to do and it is a horrible positive feedback loop that just spirals out of control.** And that is no help at all and does not lead to more things getting done.

I have to remember I am the one who is creating the standards for my behavior. I can make them reasonable.

As long as I get by, I am doing ok.

I need to eat. I need to do reasonably well in grad school so that I don’t get kicked out. I need to pay bills and pay rent. I should try and avoid going into debt. As long as I stick to that, I am doing ok. It is fine if I watch a lot of tv. Or if I hide in my room and don’t talk to people. Or if I do talk to people. Or if I don’t exercise. It is all ok. I am surviving.

On days I remember that, I am fine. I am more productive. I am happy. Of course, determining what “reasonably well” means is a whole issue on itself…

~~~~~~~
*They are usually things that I do need to work on, like being able to make appointments or go to the doctor or go to a meeting or such things.
**I really want to say a negative feedback loop, but that is wrong. A negative feedback loop will turn itself off or regulate levels, because it negatively effects itself. A positive feedback loop builds on itself and increases and increases. One biological example of a positive feedback loop is peeing.

Post-meds first thoughts

Right now, things are different. Partially because right now I have to deal with the politics part of science, which I am not a major fan of and which confuses me. But also, (and with what was probably not ending up as the best overall timing), we (doctor +me) discussed it and I got off my antidepressants. Oh, and also, as a heads up here, I am going to briefly mention various things that happened that lead to me being on antidepressants (mostly self-harm and suicidal thoughts).

***Oh, and also brains are weird and do strange things and I certainly don’t understnad them, and this is definitely just personal-me-rambling thoughts. Do whatever makes your brain happy and work. If antidepressants make your brain work, then by all means, keep taking them. I am not trying to say that you should stop taking them or try to stop taking them or that being on them is bad or only a phase or whatever. It is just that for me the side effects are starting to outweigh the benefits again.***

And it has been long enough that I have started to sort out the differences between the weird side effects that happen whenever I get on or off of medications and actually being off of medication. So I am sorting through my life and seeing what I have been up to now that I am *actually* off of meds. I want to stay off of them, if I can. I know they are good and useful and they helped me a lot. I know I needed them. I don’t think I still need them, but I am not positive. I’m sorting it out and working through it and discussing things with people and seeing the results and we are experimenting in how staying off of them is working, and then after a month, we will re-evaluate the decision.

Now that I am off them, everything seems realer. Things are less blunt and less dulled. Things were a lot flatter before. There’s more colors and layers to things. This is generally good. But it also means things can be sharper and things can hurt more. Because when I was on my meds, they were mostly sort of dulled off to the edge. My thoughts and senses and connections faded and separated out more. The world was more blurred, but that also made it softer and safer, and that was what I needed then.

But I like the world with the colors and the layers and the connections. I like how the world is now, how beautiful everything is. I had missed it, and I am glad it is back.

I haven’t noticed anything specifically or abnormally strange in things I am doing or thinking. I’m fine with the general things I know about related-to-depression things. I don’t want to hurt myself or kill myself. I don’t seem to be crying more than the normal amount or at unprompted things.

The only big thing I have noticed is that I think I was less stimmy before. And since I translate my emotions through what I am doing, it confuses me. I am not sure if I am happy or stressed or tired or frustrated. My movements are more and my movements are different. I’m not sure if this is good or bad. So I am a bit confused by this. I’m not sure why I am moving more or moving differently. So I can’t tell how this translates out. It isn’t always bad stimmy, but it certainly is more stimmy.

Stimmy stimmy stimmy stimmy stimmy.

I know I was more manageable on my meds.

But what does manageable mean? I’m not sure what I even mean by it, but I know the word I want is manageable. I don’t know if I meant more manageable for me or more manageable for other people. I just know that word belongs in this description. More manageable for me is good. More manageable for other people… not so good, necessarily.

I know I seemed more normal when I was on them, but I try not to have that be my goal. I try to have my goal to be to be happy and to make the world a slightly better place (or at least not a worse place) and to not hurt other people. And there are some career goals related to science thrown in there as well. But seeming normal is something I try not to have as a goal, because I don’t think it is something really attainable for a prolonged period of time, and I try not to have impossible or unattainable goals.

So that’s where I am at for now. We shall see how things go from here.

telling autistic

Some more choosing-a-lab/grad-school-struggles randomly and when that happens I am not very good at writing at paragraphs or capitalizing or even really going back and editing it but also because I am still sort of mush on this topic and ideas right now. So sorry about that because I know lack of capitalization and even also inconsistent capitalization and punctuation can be distressing to read to me at least so here’s a heads up that it is all sorta meltymushy.

one problem i’ve found that I have with autism
and why i don’t want to tell people
or can’t

because for the longest time i would read stories of kids with autism–because its almost always kids in the stories
and i thought it couldn’t be real
because they sounded just like me–a bit younger often, and with a tendency to be boys—and I was not a boy no way who knows what boys were up to or how I could related to them
so i thought most of it was a new made-up craze
that things were overconcerned and overpathologized when it was just people being people

of course
eventually i realized that actually in these stories these kids who couldn’t really have something Named, couldn’t really all be that different
because it was things I did
things my family did
things I didn’t think at all were unusual because they were woven into my everyday life

that these things were not actual Things That Everyone Does
but rather, unusually unique to me and occasionally family members
and this group of autistic

I would keep reading the stories before I realized
because I recognized something similar
but also reading them trying to figure out what exactly it was that made these kids different

sometimes jealous of the more-overtly-things that meant they didn’t have to talk to people
or somehow were allowed to do things in public I knew that were not allowed but they were ok for them
not knowing how amazingly lucky and accepting my life had been–which is probably one big WHY that no one noticed things about me

and now i’m struggling with some things in school
contemplating telling people to see if that would help
—by people i mean official school people—
(although i don’t know who i would tell since i am not even in a lab)
but I’m afraid they won’t believe me

because just like my family was slow to believe when i told (some of) them
because it was just things that everyone did
i live in a world of science and scientists
and a lot a lot a lot of the things I do are not all that uncommon–at least compared to the general population
there is at least one professor who I am almost positive (upwards of 90%) is autistic too
and there are others with hints
and so i feel like it would be less believed
because the straits stand out less–which is sometimes good
but makes asking for help harder

—well, that and the fact that I don’t have any actual official paperwork of any sort saying i was autistic. probably a flaw at that time that i should have predicted coming up in the future

maybe when i get in a lab officially
i will eventually tell that PI
and help figure out solutions

In general, i’m not very good at telling people
i’ve told one person who asked directly
i have told 2 close friends
i told boyfriend

i wish people would ask directly
that is why i didn’t even tell the therapist/pysch person
because it didn’t come up in any of the questions she asked me

but i think it is very rare that people will do that
it has only happened once

so i probably shouldn’t hope for that