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.
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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.

Gateway friends

In high school, I had one best friend, L. We had all our classes together, except I took French and she took Spanish. We sat in the hallways studying together before school, we read books together at breaks and at lunch. When we hung out on weekends, we would hang out at her house (or sometimes at mine, but usually at hers). I had other friends, too, but I never hung out with them without L. It just wasn’t and interaction thing that I did.

On days that L. did not come to school (which was very rare, but happened a few times), I was completely lost. The times I knew she wasn’t going to be there (like college visits) were fine; I could plan ahead and bring books to read or work on math or read for class during breaks. I could find places to sit by myself instead of wandering to find her. When she was unexpectedly not there, I struggled. I would wander around and around, trying to find her. Even if it was after a class that I had that she was usually in, so I knew she wasn’t at school today, I still would look for her. I wouldn’t be sure what to do.

Then we graduated high school, and L. went to the Naval Academy, and then went to (is in) med school and got married (last week!). She’s always been bad at non-in-person-communication, so we see each other a few times a year, and I send lots of emails, but that’s all. It’s great to see her, but she isn’t the friend that I center my life around anymore, because our lives are so different.

In college, I had another friend. We actually were acquaintances in high school, in the small group of girls that took all the same AP classes. C and I both majored in the same thing. Almost all of the friends I met in college (with boyfriend being a notable exception), I met through her. Including two other girls that I became almost as close of friends with. They answered my questions and were in many of my classes with me. They were lab partners and fellow TAs. I always had one of them to rely on in pretty much any social situation I was in. They were the friends I went on the Disneyworld trip which was my first big traveling-without-adults-trip and were safe when I melted down in Walmart. C. was my friend with whom I travelled through Europe for 6 weeks.

C. is much better at internetting than L, so we do talk really frequently. There is pretty much a constant thread of communication going. (I talk to the other girls frequently, too, but not quite as much.) But she isn’t physically here, she is no longer participating in basically all my interactions ever. I don’t have the same person (and set of persons) in all parts of my life.

I have always had one (or a small group of) close friend(s) who I did everything with. Social and school. I’m lost right now, without my gateway friend. I don’t have one to be safe. For me to follow around as I get used to the new social environment. To have in all my classes (I don’t really have anymore classes). To eat with and sit with and talk with. To be my buffer from the world.

Boyfriend does a lot of this, when he is able to. But he lives a 40 minute drive away right now. He has his own work and isn’t really integrated into this social group. They are friendly with him, just like C. and co were friendly to him. But he is usually not here.

I have to remember a few things. That I have only been here a year, and it took me a year to meet L. It took me a year before I was really close friends with C. That it isn’t fair to rely on one person to be a buffer between me and the world, to help me feel safe and facilitate social interactions. I find grad school weird because it is a combination of school and a job, it seems, where you sort of still have your main social circle being other students, though.

But I miss having one close friend who shared every part or almost every part of my day-to-day life. I miss having someone safe who is reliably around at school and at social activities.

Fear and anger

One of the things I am most afraid of is making other people upset or angry. This tends to be a problem. When other people are angry, even if I know it is not at me, I am afraid. Even if it is something completely unrelated to me. If my sister is mad at my parents for not letting her go out somewhere with her friends, I am afraid.

The more tired or stressed I become, the less capable I am of distinguishing between actual threats and perceived ones. So things that would just make me minorly uncomfortable, like someone complaining about how their boss made them work over the weekend, or even things that on a good day wouldn’t upset me at all, like complaining about failed experiments, will make me afraid. And then I want to run and hide.

But of course, I can’t hide under my desk at work.

For several reasons.

Partially, the floor is disgusting.
Also, I know that if people saw me hiding, then they would be concerned and ask if I was ok. And that would lead to more human interaction when I do not want it.

When I am especially afraid, all questions are a threat.

I used to tell my parents to “Stop yelling” when they were saying things, without even a raised voice, when I knew that there was something wrong, maybe I was in trouble or a sister was in trouble. There’s something I don’t quite have the word for still. It isn’t yelling, because it doesn’t require a raised voice. It’s a-something-is-wrong voice and it makes me afraid, even though I know I should be safe.

I don’t know why I have this fear. I am not afraid of my parents. They did not unfairly punish me. Usually, they were pretty explicit about what I had done wrong and why it was not ok and what was going to happen as a result. The reasons were pretty explicit reasons, usually safety related or you-aren’t-allowed-to-hit-your-sister related. And the results were usually pretty reasonable punishments like apologizing to my sisters or going to my room to calm down or extra chores to make up for creating an unreasonable mess. There is no clear reason why I should have this fear of conflict.

I think part of the reason I am afraid is because I am never sure WHAT is wrong. Is it anger or tiredness or frustration? Even with boyfriend, even with my family, I can’t pick up on tired versus angry. It makes behavior unpredictable.

And lack of predictability is frightening.

And if I can’t handle the possibility that someone I know and trust and love might be upset, then when it is someone I don’t know, it can be especially terrifying. This is one reason why I try to stay away from all the activism and issues and current events and internet things that are always going on. Because I can’t handle them and they make me want to hide.

And that is maybe ok, to only float around the edges and contribute my personal stories. To share bits of happiness and some struggles. I should be good at floating around the edges by now. I’ve done it my whole life.

Because it is maybe ok to prioritize being safe and feeling safe.

Blogging Belonging

Dear Autistic friends,

You are all wonderful.
Thank you so much for making a place I fit in.
I love the internet.

I’ve usually had some places where I’ve felt like I’ve fit in. I am from a very close extended family, where most of the cousins are within a five or so year age range. And there’s a fair number of us, and we’re pretty strange (#MySemiAutisticFamily is what boyfriend calls it to differentiate from the other very normal apparently side of the family). We all grouped together and played the strange games kids come up with when they have little adult supervision (or think they have, anyway. Our parents were pretty sneaky.) So I’ve always felt like I’ve belonged with these cousins.

But eventually you enter the real world, where you sometimes (or closer to almost-always) have to interact with people that you are not related to. And that is when I started to realize that things were different. And as my cousins have grown up, and dispersed to different jobs and countries and medical schools and places without reliable internet, and developed lives outside of family, it becomes more and more necessary to talk to people you are not related to.

But the great thing about cousins* is that even when you haven’t seen each other in months or years, once you put yourselves together again, it is just the same as the last time you spent a week straight together hiking and going to Trader Joe’s.

And as my life grew less and less structured, and I had to spend more and more time away from family, as I moved into high school and college, as I had more and more responsibilities and more and more interactions and more and more strangers, I got more and more alone. I started to realize that I was different. And that it wasn’t always the good different (I always knew I was better than a lot of people at math for instance). I started to realize that things that were incredibly difficult for me were sometimes things didn’t even realize they had to do.

I got more and more lost.

Even though I made some amazing friends, there was still something missing. My other friends seemed to like each other more, because they were always hanging out (eventually I learned the formula for initiating hanging out, unfortunately just in time for graduation).

And then I figured out (or started to figure out) this whole autism thing. And it’s like finding a whole new branch of cousins. People who understand me, who have the same stories and history. Even though there are so many ways and differences in life and life circumstances. There was still the sense of almost easy familiarity that I have with my cousins.

And it has made my life better. I still have struggles, but I have a place of belonging. I have a place with answers. A whole new place to turn for advice.

So,

Internet people, thank you.
Thank you for being here and being there and being so similar.

Blogs are weird things, where we share secrets with the whole world and make friends with strangers that we have never seen, who know things about us maybe even our closest friends don’t know. I was initially skeptical.

Thank you to E. at The Third Glance, where I first realized I could be autistic because I could see myself in almost everything she wrote. When I first realized that there might be a category for my different, that maybe it was an actual difference, not just a character flaw.Thank you to autisticook for adding me to her list of autistic bloggers. That was AMAZINGLY INCREDIBLE  Because it was belonging and sort of the first confirmation that other people acknowledged me as autistic. That I could join the internet community. Thank your Nattily at Notes on Crazy for all her helpful app knowledge and suggestions and helpful hints to make life better.

And there are so many other people.

So many amazing people.

And fitting in and talking and community and happiness.

Thank you, semi-strangers that I met on the internet.

You are amazing and you have made my life so much better.

Sincerely,
Alana

~~~
* I want to make it clear here that this is probably not actually a generalizeable statement. It is really refering specifically to my cousins, although I do know other people who also have this experience.

Just another reminder that autistic children grow into autistic adults

I’ve been seeing so many posts today about autistic children, so so so so many. And that is just from the brief facebook browsing breaks I have been taking when I am supposed to be designing primers at work. I (mostly) have not been actively seeking it out. And sure, children are adorable, and you can put up really cute pictures of them which you can’t really do for adults, but the story is incomplete. (Not to say that autistic children are not important and wonderful, as well.) Autistic children grow into autistic adults.

sleepwakehope 1 in 88 people. Autistic children grow into autistic adults.  TOM WILLIAMS. I thought their lifespans were significantly shorter. Labrynithia. Autistic people have normal lifespans. You may be thinking of something like Down Syndrome, that is associated with serious health concerns. Autism is (mostly) just associated with neurological differences. Nine to five workday. And even for people with Down syndroe, that has (and is) changing for the better. In 1929, most people with Down syndrome lived to be 9., maybe 10 years old 18 years later it jumped to 12-15 years old. Today, 44% will live to be 60.
This is from the comments on a NPR article Jump In Autism Cases May Not Mean It’s More Prevalent.
Admittedly, I should really know better than to read the comment sections of things like this (AND EVEN
MORE TO I SHOULD KNOW BETTER THAN TO COMMENT WITHOUT TRIPLE CHECKING THE
NUMBER), but actually it wasn’t as bad as it could have been (and people didn’t even fuss about
 the number-typo).

And then I happened onto the NPR comments for this article and decided that maybe I will take an optimistic view that people honestly just don’t know that it is possible for autistic children to grow up (if you count lack of knowledge as the optimistic view). For people who don’t think about autism much, maybe it isn’t too much assumption that people with autism have significantly shorter lifespans. After all, it is compared to cancer and life threatening diseases so frequently. It is painted as a horrible horrible thing that tears families apart and it is full of doom and gloom and ominous signs. Maybe it makes sense then that people don’t realize that autistic children grow into autistic adults.

But they do.
Regularly and frequently.

And I think the world needs another quick reminder that autistic children grow into autistic adults. (And mostly, I want to tell everyone who posted something about autistic children today (well, I suppose they mostly posted about children with autism, technically) that autistic children grow into autistic adults. But I am not brave enough to do that, to publicly link my name with autism yet, with any sort of phrase or words where people who know me vaguely might hear and notice. I am not yet comfortable or confident enough in this new identity to tell people I know.

So I am going to tell the anonymous world of the internet, through a method not attached to my real name.

Autistic children grow into autistic adults.
Autistic children grow into autistic adults.
Autistic children grow into autistic adults.
Autistic children grow into autistic adults.

And here is just a brief smattering of some of the lovely autistic adults (well, blogs by autistic adults) that are out here on the internet. It is largely incomplete. I know there are so so so many more people that I have missed (and if you would like to be added to the list, or feel I have missed someone who should be on the list, just comment or email me and I can add you). (Or if you would like to be taken of the list, I can do that, too.)

(Some) Blogs by Autistic Adults