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.
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.
|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.
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.
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.
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.