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

hows and whys

I have to choose a lab and that is no fun because they don’t really tell
you the hows or the whats or the whys and whenever I go to try and talk to
people, they just ask be questions. When what I am asking for isn’t the
questions but the process. What is the process for choosing a rotation. For
choosing a lab to work in. I would like a protocol. I would like some
directions other than “find a lab”. How do we find one? Once we have
identified one that we think we would like to join, how do we go about it.

They say go and talk to the faculty, but they don’t say what to talk about.
So I go in and talk and end up just as confused at the end with no specific
progress.

When I ask how to choose a lab, how to join a lab, they do not tell me.
They ask me questions that lead down a different path. I want to know how
to contact people. I want to know the how about it.

Even if I get the strength and spend days and days making the words and
walking around outside the building to prep before going in with explictly
said words “I would like to join your lab” it does not work. It doesn’t
come out… the words don’t want to listen at all. So I just sort of go
there and nod and murmur along and agree to all the things and say
everything is doing great and run quickly quickly quickly through the
little bit of the script I can still remember. And we end up more confused.
Both of us.

Once I tried to write it down on a post-it note I brought in.

Sometimes they ask me questions I haven’t prepared for and I have no answer
for and I scramble for them in bits and pieces and try to make words out of
things that aren’t words.

I know it is because there are multiple of us trying for the same lab and
there is so much that depends on it on funding and who to choose and what
to do but I do not know how to do it. I do not know the how.

And I’m terrified I’m too slow. I sort of already had one person tell me no
because I didn’t express interest and I don’t know how to show I can
express interest in a clear and obvious way. I know how to do it in the
ways my interest and happiness works. Although the lab I want to join was
the first, when I was less skilled at digging into the problems and hiding
in the data and building a home out of it. I’m afraid the other person or
people trying for this lab will win. Because they know the words and the
procedures and don’t seem to have to prep with words on a post-it note or
walk around and lie down in the grass afterwards to process and figure out.
And they know the words and the ways of people and all I have is the
long-ago memories of the brownies and blondies and other treats I brought
into lab in October November December.

Processing is not my strong point.
People is not my strong point.
Choosing is not my strong point.
Fighting is not my strong point.

Processing processing processing.

Why do I want to join your lab?

I know in the patterns. I know from the part of my brain that doesn’t think
in words. With the following of patterns. Where all the things come from
patterns. I can tell somehow. I know I was happy. I know I liked the work.
I don’t know the how the why the reasons, at least not in words. The part
of me that knows things like this doesn’t know in words, not always, and
there aren’t words or translations leftover.

But that’s not an adequate answer. That’s not a coherent explanation.
That’s not a convincing reason to choose me over someone else. If I can’t
articulate *why* I know, just that I know, it isn’t particularly helpful.

The hows and the whys and the words and the work and the reasons.

Friends of friends of friends

I’ve been thinking about friends and making friends and being friends recently. So here is post 2 of ??? in this set about friends (which is why they are also sort of repeating the same stories and ideas, as I go through and process different closely-related ideas, there will be closely-related similar posts.)

Sometimes my friends have friends who I do not know.

At my friend L’s wedding, I had struggles with that. Because she had other friends there and other family, and was busy with the getting-married-part of her wedding. So I didn’t really get to talk to her much, which was strange, because usually when I hang out with her, it is usually just me and her.

We had a pattern throughout high school, where we would go over to her house and study AP Biology and try to predict the theories we would learn in AP Calculus without reading ahead in the book, based on what we talked about last class. And we would read books and hang out and bake cookies and just sort of chill at her house quietly.

Whenever I hung out with other people with her, I would follow her around closely. She was homeschooled until high school and so by the time we were friends (sophomore year) she was still not quite as used to all the social things that happen at school and I was oblivious autistic me, so it got along well. But she was generally better at people, so I would follow her lead in social situations.

But then at her wedding, I couldn’t do that. Since I was a bridesmaid, there were various things I went to that boyfriend wasn’t there to be my social interpreter. But she was busy with other friends and family and his family. So I couldn’t follow her around. But it was also a very loosely-defined-casual-bridesmaid role so there weren’t really specific things that I had to do, so that didn’t help.

Sometimes my friends have friends who I don’t have.

And I don’t like that.

But I should. Because I have multiple groups of friends and they don’t all know each other. (I actually don’t really like when my friend-groups-intermingle… it stresses me out).

Sometimes my friends hang out without me, and that is ok, too.

One of my college friends specifically explained it to me. (Multiple times. Because I have good friends.) That it is ok when I hang out with one friend sometimes and not the other, and likewise, it is ok sometimes when one pair of friends hangs out without me. Especially since they would go do things like go to bars, and bars are not really something I do.

Also some of my friends like to do things more than I like to do things. Or at least things around people. So they would be lonely if they had to only wait around for me.

My friends have friends who I don’t have.
And that is ok.

Gateway friends

In high school, I had one best friend, L. We had all our classes together, except I took French and she took Spanish. We sat in the hallways studying together before school, we read books together at breaks and at lunch. When we hung out on weekends, we would hang out at her house (or sometimes at mine, but usually at hers). I had other friends, too, but I never hung out with them without L. It just wasn’t and interaction thing that I did.

On days that L. did not come to school (which was very rare, but happened a few times), I was completely lost. The times I knew she wasn’t going to be there (like college visits) were fine; I could plan ahead and bring books to read or work on math or read for class during breaks. I could find places to sit by myself instead of wandering to find her. When she was unexpectedly not there, I struggled. I would wander around and around, trying to find her. Even if it was after a class that I had that she was usually in, so I knew she wasn’t at school today, I still would look for her. I wouldn’t be sure what to do.

Then we graduated high school, and L. went to the Naval Academy, and then went to (is in) med school and got married (last week!). She’s always been bad at non-in-person-communication, so we see each other a few times a year, and I send lots of emails, but that’s all. It’s great to see her, but she isn’t the friend that I center my life around anymore, because our lives are so different.

In college, I had another friend. We actually were acquaintances in high school, in the small group of girls that took all the same AP classes. C and I both majored in the same thing. Almost all of the friends I met in college (with boyfriend being a notable exception), I met through her. Including two other girls that I became almost as close of friends with. They answered my questions and were in many of my classes with me. They were lab partners and fellow TAs. I always had one of them to rely on in pretty much any social situation I was in. They were the friends I went on the Disneyworld trip which was my first big traveling-without-adults-trip and were safe when I melted down in Walmart. C. was my friend with whom I travelled through Europe for 6 weeks.

C. is much better at internetting than L, so we do talk really frequently. There is pretty much a constant thread of communication going. (I talk to the other girls frequently, too, but not quite as much.) But she isn’t physically here, she is no longer participating in basically all my interactions ever. I don’t have the same person (and set of persons) in all parts of my life.

I have always had one (or a small group of) close friend(s) who I did everything with. Social and school. I’m lost right now, without my gateway friend. I don’t have one to be safe. For me to follow around as I get used to the new social environment. To have in all my classes (I don’t really have anymore classes). To eat with and sit with and talk with. To be my buffer from the world.

Boyfriend does a lot of this, when he is able to. But he lives a 40 minute drive away right now. He has his own work and isn’t really integrated into this social group. They are friendly with him, just like C. and co were friendly to him. But he is usually not here.

I have to remember a few things. That I have only been here a year, and it took me a year to meet L. It took me a year before I was really close friends with C. That it isn’t fair to rely on one person to be a buffer between me and the world, to help me feel safe and facilitate social interactions. I find grad school weird because it is a combination of school and a job, it seems, where you sort of still have your main social circle being other students, though.

But I miss having one close friend who shared every part or almost every part of my day-to-day life. I miss having someone safe who is reliably around at school and at social activities.

Looking for a word

I was looking for the word to describe why I did so poorly on retreats, why they terrified me, why I was absolutely miserable on all of them. How they were just awful experiences for me, and the only thing I got out of them was how not to cry. How I spent them in rooms of strangers and waiting forever for figuring out how all the other people were doing things that were making sense to them.  How I wish I had known I could call my parents and have them bring me home, but I had no idea that was a possibility and no idea how to go around doing it. For a word for the explanation.
I know that word, or at least a summary of it.
But I won’t tell other people. I both desperately want to, and am simultaneously terrified to.
I don’t want to use it to explain away excuses and failures, to be a bad example, to give it a bad name.
I don’t want people to believe I don’t have a claim to it,either
There are so many times, when I am trying to explain a social thing, where I am trying to explain how my brain does not do the thing, or how I have complex work-arounds to allow my brain to do the thing, and I can’t find the word.
Or more accurately, won’t use the word.
Can’t
Won’t
Can’t
Won’t
Autism. Autistic.
It would make the explanation quicker, perhaps. But I can’t make myself use the word. Not in “real life” to physical people who actually know who I am.
It might not be the best thing, professionally, so I can understand on holding off on it there. But what about socially? When I am interacting with boyfriend’s priest friend, or his Jesuit-in-training-friend (yes, he knows a lot of priests/priests-to-be)… they are a social interaction that is not at all connected to my professional life (most of my social life is connected to my professional life, so I suppose it could be iffier there).
I am mad at myself for not using the word when I know it is there.
I am mad at myself for wanting to use the word when I am not sure if it applies to me, or if I have a real claim, or if people would think I don’t have a real claim.
I am confused and tired and stressed.
I know the word, why can’t I use it?
I know it is tied up in ideas of disability, and that I am afraid of the consequences of that. I would rather it be a personal failing of me, of me not trying hard enough, of laziness, in some ways, than being a thing I can’t do.
Shame, maybe.
I don’t want to admit I can’t do the thing.
Especially when I usually can do the thing, it just might require a lot of energy that I might not have at the time, so it is then laziness maybe.

ALSO:
After writing this, I read this and it is sort of related and similar and says sort of same-like-things. So it reminded me of it and I will link it here.
http://youneedacat.tumblr.com/post/90697898185/why-atypical-was-so-damn-important-to-me-as-a-kid