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.

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.

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

bad no good

I want to drop out of grad school
I want to just go home and never have to do anything again

I don’t want to think about getting married
I don’t want to think about picking a lab
I don’t want to talk to professors

I can’t go home I have so much to do
I can’t miss a flight I already checked in for
I can’t stay here
I can’t function properly
I can’t eat or make food
I can’t talk to people correctly

I want everything to stop
I want everything to stop
I want everything to stop



Normally I do well in grad school. Now is not one of those times.

Grad school is self-directed which means I don’t have enough direction. I don’t know how to choose and how to convey my interest appropriately in joining a lab. And when I did, there were not-clear-things that resulted from the conversations (and from me crying in the middle of conversations) and it is all a no-good mess, still. And I talked to advisors and people I rotated with and they just kept asking more questions and not answering anything explicitly because it is up to me to decide so I have to make the decisions. And because it took so long for me to talk clearly enough that people understood what I was actually saying (on the order of weeks), now I am leaving for 2 weeks without knowing what I am doing when I come back. And without having joining a lab until who-knows-what or if people want me to join or WHAT because it is all an awful NO GOOD HORRIBLE BAD MESS.

Eventually I calmed down a bit and talked to people and wrote out the steps for the current life-grad school-rotations-communication dilemma. At least I’m not in the meltdown-crying-every-hour-awful-mess-state that I was earlier. I have a plan. Well, sort of a plan. A plan to figure out a plan. To fix all the big horrible mistakes that I have made and have gotten behind on. To make up to all the people I have disappointed. To stop disappointing people and stop making mistakes.

Normally I do well in grad school.

But I am going to go home (which was already planned) and my parents are going to take care of me for two weeks and I can e-mail professors about things and do everything except meet-in-person which is something that I need a lot of preparation for anyway. And I can focus only on the tasks I need to do and break them into steps and hopefully figure out how to do things.

Maybe going somewhere safe will fix it. Seeing if hiding from my problems will fix it. (Or “taking a step back and looking at the bigger picture” if I put it in more friendly terms).

Messy mind, messy writing, sorry about the blurry thoughts.

Running Away

A while ago, I ran away from home. True, I am an adult. An independently living adult. So you might not strictly call what I did running away. You could call it “taking a walk to clear my head.”

But it was really running away.

It was a panic, that resulted in a pretty much nonverbal me running out barefoot into the neighborhood. After about half an hour, I was able to talk myself into going back to my apartment for shoes, a coat, and my phone.

Shoes, coat, phone.
Shoes, coat, phone.
Shoes, coat, phone.

Then I was off again.

I know to walk if I am able to walk instead of run. I know the ways to walk so no one asks you questions or if you are lost or asks for directions. I know how to wander aimlessly while looking like I am walking purposely. Because walking purposely protects you from the people that would stop and ask you questions that I would be unable to answer. (Admittedly, now that I live in a city, I suppose I am less likely to run into random people I know, or just nice other people who ask if you are ok, but that was a threat in undergrad.)

I knew to walk east and north. Always walk east and north. (This is a purely safety reason, because the neighborhoods south or west are not as nice of neighborhoods.)

So I walked east and north, aimlessly but with purpose, to get away, to escape my mind.

Eventually, I had calmed down enough to sit down on some steps and send a help message.

“Ran away but went back for shoes and phone so ok walking campus now not safe (physically ok) but cant go back home again tried once help maybe”

And boyfriend called and talked me through, even when I wasn’t talking, and talked to me about little things about the week until I had words back and was able to walk back home past the motorcycle crash and the angry people and the police back to my apartment back to my room and be safe again. And he stayed and talked me through to safety.

And that is why I love him.

If he hadn’t called back, I’m sure I would have eventually calmed down enough to get my words back. I am not sure where I would have been able to go, or hide. I would have kept walking east and north, until I hit the lake. And kept walking. Not into the lake, but somewhere. Eventually the cold might have reminded me to go home, but I’ve walked for hours while it was snowing before because of similar panic. (I usually loop around a relatively small area, though. So I won’t walk one direction for hours, but I would walk the same paths around campus for hours in the snow.)

When things get to be completely overwhelming, I hide or run. Hiding usually comes first. If there is nowhere to hide, then I will run. I’ve been in a hallway before for a professor-networking-dinner-event, then the next thing I know I am literally halfway across campus, running. At a certain point, it becomes something out of my control. That is why it is good I spent my first adventures into living alone in undergrad on a campus without a lot of streets criss-crossing it.

I am afraid that one day I will panic and run out of lab in the middle of an experiment. Or run out of a meeting or run out of my (in the far indefinite future) thesis defense. Most of all, I am afraid I will run out into the street.

So I look for hiding places, for safe places, for places that I can go in a panic. Ways to hide instead of run. I’ve found several of them. There are quiet rooms full of rarely used equipment. There are the wells under the desk (although people could find me there, but it is a small space). There are always bathrooms.

I wish that I could say definitively that one day I will grow out of the running. That I will be able to just stop it. That I will be able to manage things so that they are in control and so that it never happens. I’m afraid one day I might be watching my (potential far-distant) children and get so overwhelmed I run away, leaving them who knows where. I don’t think I will. I tend to prefer to hide, if at all possible. I want to be able to manage myself better, to know when I am close to overwhelming, to know when I can push myself and when I need to stop. I think I’m generally getting better. But these full-out-panic-don’t-remember-runnings didn’t happen all that frequently to begin with. (Possibly because usually I can hide.)

not knowing what feelings feel like

Emotions are hard. I don’t understand them. I can’t figure them out. There are very very very few of them that I can recognize in myself. I have written about this before, and it is something I still have so many struggles with. Alexithymia. It is one of the things I hate most about the way my brain works.

It would be so much easier sometimes to figure out how to fix things if I knew what was wrong.

For instance, right now.

I know something is wrong. My stomach hurts, but not in a throwing-up/sick sort of way. More in a tied-up-in-knots way. My brain is jumbled and going every which way. I have been lying on the floor for the past… hmmm well, it has actually been over 4 hours. But I have been watching Scrubs, so it hasn’t been all useless. [Lying on the floor, admittedly, in itself isn’t necessarily a bad sign. My family lies on the ground all the time (partially because we never had enough chairs in our family room growing up, so usually at least one person has to sit or lie on the floor.] I haven’t cried, and I don’t think I want to cry.

I don’t know what this is.

I don’t understand how people can just know that they are nervous or jealous or embarrassed or tired. I’ve tried asking people. No one can explain it satisfactorily. They just “know” that that is what nervousness “feels” like. It is extremely unhelpful.

I want to know what I feel like right now. I want a name for the specific emotions. Because when you can give things names, then it is so, so much easier to start addressing them. I want to be able to categorize and classify my emotions. Because identification and classification are the first step to fixing something.

I want to be able to answer boyfriend when he asks me how I feel with more than a “good” or a “bad” or a “not sure”.

I don’t understand how this works for other people. I know the temporary solution. It’s on my giant flow chart in my closet. I haven’t eaten recently (because it is 2:19 currently and I ate dinner several hours ago). I need to eat. And it is after midnight. I need to go to sleep. But those are both temporary solutions to a feeling that I have had since before dinner, before midnight. Admittedly, the temporary solution is what I need now, because it is attainable. But I want a fix. I want this to be fixed. I want there to be a way that I can understand emotions that are happening to me and name them, because that seems like a basic self-aware thing to be able to do.

I don’t have words for them. And I know there are words that exist for them. I even know what the words are. But I have absolutely no idea how to map them on to the actual experiences that happen or the actual sensations that I assume are emotions.

Written words

I process things better when I have them written out.

I can write things down that I don’t know I am thinking. Then I can go back and read them and figure things out.When I write things, I can think and pause and hold a thought. I can keep it there longer, work around it more precisely, than I could if I was just thinking alone. I can write things that there is no way on earth I would ever be able to say. Emotional things are hard to say. They are hard to write, too, but it is better that way.
If I write out my thoughts, I can see them. I can tell what they are. I can organize them and make them into something that makes sense. 
Some parts I am sure will always be messy. Because thoughts are a bit messy, I think inherently.
I write to see myself think.
I write people letters and long emails and short emails and text and gchat. I love text-based communication forms. Now, don’t get me wrong, I do thoroughly enjoy skyping (and even talking on the phone with) boyfriend and parents, but that is an exception. They know my communication style. They can understand me when I talk fast. They know there will be long pauses on the phone(which apparently there are. I was unaware of this until the diagnostic interview).
Boyfriend and I write each other letters about important discussions. About big ideas. About worries and struggles. I have gotten better at talking about them (and sometimes things really should be resolved more quickly than an exchange of letters). But in these letters, these conversational pieces, these documented histories, there are communication.
And sometimes, especially on sensitive issues, I think it works better. I can say things I think might upset him and he has the ability to read it in private. It gets rid of the defensive reflexive angry response that can sometimes come when you feel threatened. Because it creates pauses. We have time to thing and digest the ideas before we respond to them. 
Admittedly, boyfriend sits down and types up and outline for his letters, while I scrawl mine out in my half print/half cursive writing with notes in the margins and arrows redirecting ideas all over. It is a messy process for me. 
But thoughts are messy, sometimes even ideas that have been thought of for days a can be messy. Dreams and fears are messy.
Too messy sometimes to be said verbally.

But I can almost always write them out. And that is enough.

Non-speaking frequency

One thing I’ve noticed since deciding officially I’m autistic is that I seem to have a lot more circumstances where I lose the ability to talk or where it becomes very difficult. It seems to happen at an unusual frequency, recently.

There are several explanations:

1) This time also coincides with my general move across the country, so maybe life has been more stressful than normal and so that is why I lose my words.

2) It’s all in my head as something I made up along with my ideas about being autistic. And if I tried harder I would be able to talk.

3) I just notice it more, and then do something about it (like switch communication modes or take a break), instead of just becoming more and more upset by it until I meltdown and then the meltdown covers the lack of talking.

Of these options, 1 is probably a factor. I would like to believe in 3. Sometimes I do. Sometimes I believe in 2 instead. Because really, it does seem strange to me the idea of just not being able to talk. Because I can talk. So why would I not be able to talk sometimes? And also, the idea of not being able to talk is scary. So I would rather just be lazy or a jerk.

3 is a good thing, though. If it is real, it is a totally positive benefit of the autism label. So I’m going to try to go with that one instead.

Crazy Dance Party

My new grad program likes to socialize.

This is good, because I am bad at creating new friends, so structured opportunities to interact are something I enjoy. And also it is good because so far, I really like all the people in my program.

There is a limit, though, to how much people I can be around before it just doesn’t work.

(Also, then I found the phrase Social Hangover (from Leah Kelly at 30 Days of Autism). And that describes it so well.)

And I’m afraid of telling people that I just met that my words stopped working.

(Also, really, usually at that point I can’t really use them to say that. Boyfriend usually just asks me because he knows that happens.)

We had a fun fancy dinner with appetizers that were handed out by people walking around with a tray and then delicious dinner with meat and yummy bread and things like that. And then fancy desserts which is something I absolutely, positively adore. One of them was caramel flavored and it was wonderful. And the people in my program talk about interesting, weird things, so I generally have no problem with conversation with them because it isn’t small talk, just taking and conversation and INTERESTING.

And we were in this lovely location with just us and a view of the nighttime skyline of the city. And it was quite enjoyable.

But then the music started getting louder. And people started getting drunker, and therefore louder. And because they were drunker, they didn’t really notice that I hadn’t said a word in about an hour. And then they started off to dance, one by one by one by one. And eventually I was just sitting at a table staring at nothing, sort of stuck (which actually happened before most of them left, but at that point, I was already sort of just stuck).

But then one of the girls noticed and pulled me in to dance, so I sort of danced, I guess. Dancing is not my favorite. There are very few occasions when I enjoy it. It is people-dependent and music-dependent and volume-dependent. But I tried to look like I was having fun because they were trying so hard to include me and sometimes I even was having fun. And they would do silly things to make me smile or be less worried about dancing awkwardly whenever they noticed I didn’t seem happy. And they tried so hard and were so nice and that made me happy. Even though it was SO LOUD. But I can do loud for a while sometimes.

And then the faculty members who were at the dinner joined us in dancing. (And seeing a senior, tenured faculty member dance to “Party in the USA” is really a quite enjoyable/amusing experience). And so that was quite amusing and fun for a while.

But then it just got TOO LOUD. And I had to escape.

Luckily, around that time, I discovered that there was a terrace. The terrace was quieter. It overlooked a pond and the skyline of the city all lit up. So for a while I talked to people out there. Then later, as I got more and more tired, I just sort of stood around and followed around groups without really saying anything. Because it was still loud out there, although less loud than inside.

And then eventually we went home, and I went to sleep and I slept the whole next day, too, basically until 4pm, only with a few breaks to get up and eat or take meds or send emails. Because seeing people at that time would not have worked. Full blown social hangover. Luckily there weren’t any orientation-things until 4pm (which was why I got up at 4).

I can’t write anymore ever and I was so excited about all of this blog stuff and about my friends and about figuring out WHO I AM and silly things like that and I thought maybe I would be able to explain myself and explain everything and then it would make life easier.

BUT NO IT DOESN’T BECAUSE LIFE IS STILL LIFE.

And I know objectively I have a really great one and I really shouldn’t complain probably all that much.

And today I had fun again.

We had a board game night at someone’s apartment with cookies and moderate amounts of alcohol. And the games were quite enjoyable and the cookies were really good. And no one was super drunk and it was just us so no strangers.

(And I did have a mini-meltdown on the way there because I couldn’t find the bus and my bag was heavy and then there was a very loud physics professor on the bus behind me once I finally got on the bus and so many noises, but even with that and being a little quiet in the beginning of the event, within half an hour I was having so much fun and was so glad I went, even with my mini-meltdown.

But I think I need to learn to take a break from activities. Or at least some activities.

(I do not go to bars at night. It isn’t the alcohol that is the problem. I like alcohol (well, very specific alcoholic drinks) (aka ridiculously sweet ones). It’s the NOISE and the PEOPLE.) (And going to bars is a very common grad student activity.)

But it’s tricky because the first couple weeks are when the habits and groups and friendships are formed. And in college I sat back because of all the new-ness stress and it took a year and a half to get good friends. And it was lonely.

But LOUD is LOUD is LOUD is LOUD.

And I want to tell all the people in the program that I like them so much and they are awesome and fun to be around but I’m autistic and just can’t physically hangout with them all the time because it just makes me so tied I can’t function. But it’s not that I don’t like them. But I have really only known them a week so I should probably be more secretive about it, especially since I am generally secretive about personal stuff. And I don’t want to use autism as an excuse. Or have them question if that is really the case. (Although I think if I said Asperger’s, they wouldn’t doubt that. But people tend to have a different picture of autism.)

And this is also silly because no one has seemed all that upset or concerned or less friendly because I haven’t gone to EVERY SINGLE SOCIAL EVENT THEY PLANNED.

So yup.

That’s what I’m up to right now.

But next week, I’ll start classes and rotating, and then I will have more structure, and also the frequency of social activities will probably diminish, since everyone else will also be busier, and that will hopefully help.