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 Some of the details might be a bit out of date and sometimes the topics are a little bit silly.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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In the details and routines

Not everyone* is built for the story of adventures or super-mega-career-intensity told to us** that we should be doing (or maybe I’m spending too much time on the internet and not enough time around traditional old ladies who seem to tell people in stories and movies to settle down and this is a fake problem I’m creating for myself inside my head). Sometimes all we*** want is somewhere safe and familiar to base ourselves in. What is wrong with wanting to settle down? With wanting to put down roots and settle into comfortable routines of life? (Nothing. The answer is nothing.)
I was born too practical a person for reckless adventure. If I won a million dollars, even as a small child, my plan was to pay for my college education and then for my sisters. Now, I would add probably a house for myself and pay off my loans and my husband’s loans.**** I would never go vaguely off and adventuring. I’m not comfortable in new places (alone) or around new people. I like the familiar. I like knowing where my meals are going to come from next week and having all the ingredients and recipes for them prepared ahead of time. All these plans and routines make me HAPPY.
I’ve always been looking for reasonable solutions. There’s love in the details and negotiations of a slow and steady moving relationship. I have the letters saved from when my husband and I were dating and discussing if we wanted to take the next step (of kissing). It was slow and methodical and reasoned out. I can go back and look at them and while it first lets me know how young we both were, I can see the care and concern in each carefully typed letter I have folded into envelopes in the shoebox in my nightstand. There’s care and concern and thought put into these letters that have been outlines.
As we settle into routines of being married, it is safer and happier. The first week back was not as great, with jobs and schedules. There was a person in my place, where it had just been me and my dog before. And the dog listens to me (mostly) and doesn’t talk ever. I would come home from work to happy silence. I don’t like change, even when it’s ultimately good change.
But now as we have morning routines (more) figured out and are falling into patterns of life, it’s getting better and easier. Now that each moment of the day isn’t something new, there is time to think about the details of what is going on. Husbands will accommodate quirks that you can’t ask of roommates—I don’t like not knowing when people will be at my house. There’s love in the “at the bus stop” texts so that I have time to prepare. There’s love in the details when we count backwards to plan the timeline of a weekend day. Or in the weekly planning of meals where we trade each others dislikes to find meals we both will enjoy. Or in going through the Simpson’s episodes slowly, every few nights getting to one.

We are falling into patterns now and it’s comfortable and safe and good. Once you have a pattern and a base, then you can work towards something, because you are safe and can concentrate energy on doing things besides just surviving.

*aka me
**once again, maybe just me
***Pronouns are hard and I don’t like using first-person pronouns even when it is clearly appropriate.
****Also, now I know that a million dollars isn’t nearly as large of a sum of money as I thought, but I think I’d still be able to get a fair chunk of things out of the way. Or maybe the amount of money will increase in this hypothetical situation I am creating for myself.

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.

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.

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.