family impact on family

I’m going through and rescuing some old drafts that got lost in the draft box, so hopefully for the next couple weeks I’ll be posting more frequently. Some of the details might be a bit out of date and sometimes the topics are a little bit silly.


So in my earlier-autism-maybe-read-everything-watch-everything-even-slightly-mentioning-it but before my allowed-to-consider-the-possibility-to-myself days, I started watching Parenthood. Also, admittedly, mostly I think I started it because of that thing where when you finish all the episodes of one show on Hulu, it throws you onto another one.

But then it got older and I stopped liking it as much

(mostly because things got sad and stressful
and then so did life
and so I started wanting my tv not to be sad. But to have it be happy thinking.)

And then I’ve rewatched some since.

And what bothers me about it is my oldest-sister-thinking. My oldest-sister, always-responsible thinking. Because I love routines and I love rules, but I also know that the overriding rule has always been, it has to be done. People have to be safe. If my sisters don’t do it, then I have to do it, even if it isn’t fair. (For things that have to be done.)

Because I watch scenes where there are
“THIS ISN’T MY JOB”
and know that I never could have done that because it was my job. It was my job to help. It was always my job to help.

My sisters have screamed that (and I sure I have too, but rarely rarely rarely because as the oldest helping WAS MY JOB) as an older sister HELPING WAS ALWAYS MY JOB.

(And I know I don’t have to like every autistic character ever*, and that I don’t like middle school and teenage boys in general** which probably made it even worse but this made me hate it for a while a long long long while because I would have never screamed THIS ISN’T MY JOB)

And to watch everything be a CATASTROPHIC CHANGE and CATASTROPHIC REARRANGEMENTS


It’s weird how I was considered a big kid at 10 who had responsibilities and had to stick to them, and my youngest sister at 17 is still considered little. My parents commented on how she has a very different life (which is certainly completely true) and my parents weren’t nearly as old and frequently injured as they are when she is the same age. And its true.

But I also spent high school waiting for rides because with two parents and three children, the one who is old enough to wait at school as opposed to having to go to a place for an activity, is the one that waits. Once I was old enough to drive my siblings, I spent (some but not all) late afternoons doing homework outside soccer fields and dance studios.

I wonder what pieces are autism and what pieces are older sister-responsibility-pieces.

Because some pieces are both.

I hear stories about how everyone centers around the autistic kids life. And disruption! Well, in my mind, nothing was a bigger disruption than my sister’s dance classes almost every day and sometimes over an hour away.

Mine were the quiet kind, where we turned into a family that didn’t do birthday parties because I didn’t like them, so my parents never got in the habit of big parties. The differences between my parents telling me to stay out later and the strict curfew my youngest sister has.

We almost never had babysitters because I was usually scared of them.

Of course, I never went to high school parties like the ones on tv. I thought they were mostly plot points to move the story along, like cafeterias. Both of them were things I learned later on were very real. In “peer counseling” sessions which were mandatory school-wide discussions that occurred in section and lead by older students, I heard all about them. And my youngest sister goes to them full of all the alcohol and activities and sometimes lies to my parents to go different places and all the storybook high school things.

Sometimes when I see and read and hear about other people melting down, I think of all the times I wish I could have but I couldn’t because I was responsible and it was NOT ALLOWED. Where you have to wait to wait to wait until you get home because you are driving or IN PUBLIC or I can’t think of any of the top of my head. I can’t think of reasons why I am not more visibly noticeably autistic.

I’m usually in somewhat vague denial of it.

I went to small schools. (Catholic schools–I would have gone anyway.) Uniforms. I could learn the names of 60 other kids when only two or three names changed from year to year. Eventually. I think by third or fourth grade I knew most of them.

Everyone was decent mostly.

I went to plays and dance recitals. I had to go because where else would I have gone? But I also don’t think I ever—well, ever is not true—I very seldom had to go to places that made me uncomfortable. My parents were good about that when they were able to. And they usually were able to. But mostly, we didn’t go to those places. Sometimes there were sister’s soccer parties and such, but those events didn’t really start in loud until I was old enough to stay alone. Benefits of being the oldest. There was a brief period of time maybe where they were starting to get loud but that was also when my youngest sister was born so then we didn’t go to things that babies couldn’t go to also. And then I was old enough to stay home alone.

But I also don’t remember being a small child, or at least not well, so who knows what they worked out then or when. (They do, I’m sure). I suppose I could ask some.

But I was my first parents child so they didn’t know what was normal and not, so they assumed everything I did was normal.

So I got my autistic normal imposed on my siblings, slightly, slightly, slightly.

I wonder what it’s like to have that. Introverted autistic normal imposed on extraverted siblings. Still slightly brainweird, though. Our whole family is. At least my mom’s side. Smatterings of dyslexia gathered in there, with various (sometimes un)diagnosed ADHD and  definitely autistic traits. Brainweird.

(It sounds like a chicken looks.)

And I’ve been thinking so much about family and differences because of getting married and how I will have different family things to join and be part of in a family that hasn’t been shaped and adjusted to fit our pecularities like my cousins and my mom’s side, where there are quiet rooms at Christmas for breaks and no one minds if you disappear for a few hours.

I didn’t realize how weird we were until all the things we went to with boyfriend (now husband). (And sometimes not until after complaining about how their family does X or doesn’t do Y to another friend who tells me her family also does X and doesn’t do Y and who is generally in touch with the scope of things).

Inconclusive.

normal normal normal normal?

Oh hey, maybe it’s like me being a person with specific characteristics and preferences and needs affected my family as much as the other people in my family also being different people with different characteristics and preferences and needs.


*Also because many of them are bad in general. And I don’t really remember much about this show TBH but I do strongly remember this feeling of “I must be helpful”. ALSO THIS IS VERY MUCH NOT A DISCUSSION ABOUT AUTISTIC PORTRAYALS IN TELEVISION. It’s just that this was a starting off point.

**This is a detail that has changed. I am much more comfortable around boys and men in general than I was however many years ago that I wrote this.

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Coordination is a thing?

I’m going through and rescuing some old drafts that got lost in the draft box, so hopefully for the next couple weeks I’ll be posting more frequently. Some of the details might be a bit out of date, though. Also, some of these posts might be a little bit silly and maybe not my best writing.

 

I have horrible proprioception. I used to think it was depth perception, but maybe it is actually proprioception. But I have always been excellent at climbing things. I scared all the other moms when I would climb to the top of everything in Mommy&Me classes and just lie on the poles. I’ve always climbed trees (except now… it is a lot harder to find trees to climb in a city because mostly they are other people’s trees and you are supposed to ask for permission before climbing other people’s trees.). Of course, I didn’t run until after my younger sister learned how to run.

I have excellent fine motor skills. I can inject DNA into a single-celled embryo and dissect very tiny glands from larvae. This requires really intense hand-eye coordination because the forces and tissues are so small and delicate, you don’t get any sensory feedback so you have to learn to judge your movements by the microscope and without any touch response. When I rotated in a neuro lab, the first chick brain I dissected was perfectly dissected (even though they had set aside many brains for me to learn how to mangle the first few). I also do some other very complicated and rare embryo manipulations that would definitely be identifying because VERY FEW labs do it and I am pretty darn good at it, and I picked it up super quickly.

But I also fell down the stairs daily at high school, walked into the counter daily at home, walked into walls regularly. But maybe that was because I insisted on wearing shows two sizes too large in high school because I hated shoes that touched my toes. I haven’t fallen down stairs in years. I also tend to struggle A LOT with doors, specifically with opening them but also with walking through them instead of into them.

river in iceland with a bridge over it and snow on the ground

Lying on the cold hard ground

I’m going through and rescuing some old drafts that got lost in the draft box, so hopefully for the next couple weeks I’ll be posting more frequently. Some of the details might be a bit out of date, though. Also, some of these posts might be a little bit silly and maybe not my best writing.

I like to lie on the ground. Almost all of the day almost all of my life, I would just rather be curled up in a ball. And I mean this in a positive way–I just really love lying down. I’m enjoying myself a lot when I am lying on the ground. Also, I really hate standing around (often talking) when you could be sitting–or even better just lying on the ground. I know eye contact is more important to a lot of people, so I guess that isn’t why people don’t have conversations lying on the ground all the time.

Maybe not everywhere I am, but a lot of places. Even if it is somewhere I am enjoying myself, I know that it would be more enjoyable if I could be lying on the ground. Except, there are reasons not to lie on the ground:

  1. A lot of time the ground is dirty or unsafe. Such as crossing the street.
  2. Sometimes I would get in the way of people
  3. It is not something you are supposed to do. For some reason, even sitting on the ground seems weird to some people.

So, I generally know I am not supposed to lie on the ground.

But when I get drunk, I care a lot less about this so I lie on the ground a lot.

And that is actually how I realized I always want to lie on the ground.

 

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.

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.

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.)

#AutismPositivity2014

I wanted to participate in the Autism Positivity Flash Blog this year, but of course, I figured out that it was happening when I started to see the earliest posts head up. So it may be a bit short. Or a bit list-like. But I like lists. So that is all good.

I am autistic. Of course, I find it difficult to separate what is awesome about me because of being autistic. And what is awesome about me because of just being me. They aren’t separate things, necessarily. So what follows will be a few things that I think about when I think about autism:

  • When I think about autism, I think about moving. I think about happiness. I get extremely, jumpy, flappy, excited over things like daffodils and GFP. Or the beautiful collie I saw walking the other day. I think about how lovely it is to fully express happiness, to have it bubble up through my whole body. When I am happy, it is obvious. I have never seen any point in hiding happy. When I am happy, I share it with the world.
  • When I think about autism, I think about brains. My brain is autistic and it can do amazing things. I mean, brains are pretty amazing to begin with. They do everything. Right now I am thinking about how the my brain is telling my hands to move to type these words which also means that my brain is responsible for me thinking about me thinking and on and on and on in an incredible loop.
  • When I think about autism, I think about the Amazing Autistic Community I have found and the amazing new friends I have made.
End of Story–but not really… the list goes on and on and on and on and on and will keep going, even if I don’t add on to it here. (But if you want to see more Expressions of PosAutivity, CLICK HERE!)