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

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.
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.

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.