Rocket

There are things I know I need to do if I am going to be happy and productive and just generally function as myself and get the things done that I need to have done.

I need to go outside. Even if it is freezing cold, I have to go outside regularly. And not just walking-to-and-from the bus stop, but wandering outside by trees. Luckily, I live by a lake. Unluckily, I am bad at forcing myself to go outside, even if I know it will make me happy. Also, I am uncomfortable going outside by myself if I’m not going somewhere directly. I haven’t worked out that why, but I know it’s true.

I need to exercise. It doesn’t have to be extremely vigorous episode, but I’m definitely happier if I have the chance to dash around a bit from place to place. Little bursts of running about and around. Going on runs makes me feel better, but I’ve never been able to stick to a consistent running schedule for more than a week.

I need to eat regularly also, for maybe-probably-obvious-reasons AKA food is important to function. And I stop functioning quicker-than-average when I am hungry. But I’m also bad at remembering when I’m supposed to eat, even with Todoist reminders and alarms and lists. (And once I remember to eat, I have difficulty figuring out what to eat and the steps to eat, especially if I am already to a hungry-reduced-functioning-level.)

I’m happier when I have regular physical contact. Physical contact makes me feel grounded. But boyfriend lives relatively far away and works decently long and I can only see him on weekends. And most people are not in my comfortable-with-physical-contact-list… and also it would be weird I think since mostly I encounter fellow lab mates on a daily basis.

Luckily, there is a solution to all these problems.

This is Rocket.

Black retriever mix smiling at the camera

He reminds me to go outside several times a day. He makes it not scary and makes it fun. We go on walks with little bits of running to chase geese into the lake.

Big black dog looking at geese in the lakeblack doggie snuggling on a couch

He gets two meals a day and feeding him reminds me that I need to eat. And he is always willing to snuggle with me.

He also solves my used-to-taking-care-of-things habits that come from growing up with goats and dogs and sheep and horses and rabbits and chickens. Life always feels incomplete without something to take care of it. And as much as I like my plants and Dr. Seuss, taking care of them did not use all that much of my input or effort.

For clarification purposes, this is my super-pretty-but-not-very-
cuddly betta who is named Dr. Seuss.
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telling autistic

Some more choosing-a-lab/grad-school-struggles randomly and when that happens I am not very good at writing at paragraphs or capitalizing or even really going back and editing it but also because I am still sort of mush on this topic and ideas right now. So sorry about that because I know lack of capitalization and even also inconsistent capitalization and punctuation can be distressing to read to me at least so here’s a heads up that it is all sorta meltymushy.

one problem i’ve found that I have with autism
and why i don’t want to tell people
or can’t

because for the longest time i would read stories of kids with autism–because its almost always kids in the stories
and i thought it couldn’t be real
because they sounded just like me–a bit younger often, and with a tendency to be boys—and I was not a boy no way who knows what boys were up to or how I could related to them
so i thought most of it was a new made-up craze
that things were overconcerned and overpathologized when it was just people being people

of course
eventually i realized that actually in these stories these kids who couldn’t really have something Named, couldn’t really all be that different
because it was things I did
things my family did
things I didn’t think at all were unusual because they were woven into my everyday life

that these things were not actual Things That Everyone Does
but rather, unusually unique to me and occasionally family members
and this group of autistic

I would keep reading the stories before I realized
because I recognized something similar
but also reading them trying to figure out what exactly it was that made these kids different

sometimes jealous of the more-overtly-things that meant they didn’t have to talk to people
or somehow were allowed to do things in public I knew that were not allowed but they were ok for them
not knowing how amazingly lucky and accepting my life had been–which is probably one big WHY that no one noticed things about me

and now i’m struggling with some things in school
contemplating telling people to see if that would help
—by people i mean official school people—
(although i don’t know who i would tell since i am not even in a lab)
but I’m afraid they won’t believe me

because just like my family was slow to believe when i told (some of) them
because it was just things that everyone did
i live in a world of science and scientists
and a lot a lot a lot of the things I do are not all that uncommon–at least compared to the general population
there is at least one professor who I am almost positive (upwards of 90%) is autistic too
and there are others with hints
and so i feel like it would be less believed
because the straits stand out less–which is sometimes good
but makes asking for help harder

—well, that and the fact that I don’t have any actual official paperwork of any sort saying i was autistic. probably a flaw at that time that i should have predicted coming up in the future

maybe when i get in a lab officially
i will eventually tell that PI
and help figure out solutions

In general, i’m not very good at telling people
i’ve told one person who asked directly
i have told 2 close friends
i told boyfriend

i wish people would ask directly
that is why i didn’t even tell the therapist/pysch person
because it didn’t come up in any of the questions she asked me

but i think it is very rare that people will do that
it has only happened once

so i probably shouldn’t hope for that

hows and whys

I have to choose a lab and that is no fun because they don’t really tell
you the hows or the whats or the whys and whenever I go to try and talk to
people, they just ask be questions. When what I am asking for isn’t the
questions but the process. What is the process for choosing a rotation. For
choosing a lab to work in. I would like a protocol. I would like some
directions other than “find a lab”. How do we find one? Once we have
identified one that we think we would like to join, how do we go about it.

They say go and talk to the faculty, but they don’t say what to talk about.
So I go in and talk and end up just as confused at the end with no specific
progress.

When I ask how to choose a lab, how to join a lab, they do not tell me.
They ask me questions that lead down a different path. I want to know how
to contact people. I want to know the how about it.

Even if I get the strength and spend days and days making the words and
walking around outside the building to prep before going in with explictly
said words “I would like to join your lab” it does not work. It doesn’t
come out… the words don’t want to listen at all. So I just sort of go
there and nod and murmur along and agree to all the things and say
everything is doing great and run quickly quickly quickly through the
little bit of the script I can still remember. And we end up more confused.
Both of us.

Once I tried to write it down on a post-it note I brought in.

Sometimes they ask me questions I haven’t prepared for and I have no answer
for and I scramble for them in bits and pieces and try to make words out of
things that aren’t words.

I know it is because there are multiple of us trying for the same lab and
there is so much that depends on it on funding and who to choose and what
to do but I do not know how to do it. I do not know the how.

And I’m terrified I’m too slow. I sort of already had one person tell me no
because I didn’t express interest and I don’t know how to show I can
express interest in a clear and obvious way. I know how to do it in the
ways my interest and happiness works. Although the lab I want to join was
the first, when I was less skilled at digging into the problems and hiding
in the data and building a home out of it. I’m afraid the other person or
people trying for this lab will win. Because they know the words and the
procedures and don’t seem to have to prep with words on a post-it note or
walk around and lie down in the grass afterwards to process and figure out.
And they know the words and the ways of people and all I have is the
long-ago memories of the brownies and blondies and other treats I brought
into lab in October November December.

Processing is not my strong point.
People is not my strong point.
Choosing is not my strong point.
Fighting is not my strong point.

Processing processing processing.

Why do I want to join your lab?

I know in the patterns. I know from the part of my brain that doesn’t think
in words. With the following of patterns. Where all the things come from
patterns. I can tell somehow. I know I was happy. I know I liked the work.
I don’t know the how the why the reasons, at least not in words. The part
of me that knows things like this doesn’t know in words, not always, and
there aren’t words or translations leftover.

But that’s not an adequate answer. That’s not a coherent explanation.
That’s not a convincing reason to choose me over someone else. If I can’t
articulate *why* I know, just that I know, it isn’t particularly helpful.

The hows and the whys and the words and the work and the reasons.

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.

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

Reassurance

I spent 2 hours the day before Christmas Eve researching parchment paper. The lack of parchment paper was my big decision in what I should make for Christmas Eve dinner dessert.

I was worried that buying parchment paper would be against my moral beliefs because it would be wasteful and thus I would then destroy the environment. But I also really wanted to make cream puffs and they get easily destroyed if they stick. All the recipes said to use parchment paper. But it seemed wasteful.

My mom went to the store and bought some in 15 minutes. Parchment paper is relatively inexpensive. One roll of parchment paper will not destroy the environment. But I needed someone else to make that decision. I was stuck. I was in the middle of a catastrophizing loop. It is silly to spend hours researching parchment paper. I was not having fun. It was no good.

I need feedback. I thrive on justifications, on confirmations, on affirmations. I am so afraid I am doing the wrong thing, I need to hear that I am on track. That the things I am doing are not really horrible things. That the world will not end if I do something.
I am desperately seeking approval for all my plans. I can do things without consulting people first, I just do not like to. I like to double check to make sure my plan is reasonable, that I haven’t made any horrible oversights. That there isn’t an easy solution I am completely ignoring or overlooking.

Usually I don’t get stuck on buying parchment paper. Usually I can function relatively well independently.

I tell my friends I am happy they are my friends. I tell them this explicitly. I give specific reasons. I always am insecure of if my friends really  want me around, so I figure maybe sometimes they are too.

I tell my friends I am happy they are to stay alive. I tell them to be safe. I tell them to stay alive. I do this because sometimes I needed reminders to stay alive, but most of them didn’t know it quite then, because it am very secretive with my pain. I want them to stay alive. I want them to know others know this, too. Sometimes I do this to people who are not close friends. 
It is ok if they think I am silly for this. I would much prefer them think that than actually be in a place where they need reminders that other people want them alive. Because that place is not a good place, and I don’t want any of my friends to be there.
I worry that boyfriend has died sudden horrible deaths, (death by falling icicles is a current concern) so I send him frequent I love you texts. To check if he is still alive. He responds relatively quickly, usually, which is good. Sometimes I explicitly ask him if he is alive. And tell him to stay safe.
I am afraid of being stuck alone in life. Of making such horrible mistakes that I will be left to destroy myself alone.

Loops.

When I am asking people are they alive, I want them to know that I care about them. That they are important to me. And that I want them to know that they are important to me. 

I don’t quite know if they understand that this is what I am saying to them, when I say this.

I’m not quite sure where I am going with this.

Loops.

No definite ending, I guess.

Related:
Catastrophizing Sucks by Musings of an Aspie
Fear by Autisticook

Roommate Rantings

Things I have only had moderate success with: getting along with roommates.

I’ve always lived with sisters, so I’m not quite sure the difference. I think because maybe you are allowed to yell at sisters and sometimes hit them and getting mad at them is okay. Because I certainly had problems with my sisters sometimes. But those were usually minor incidences. But this roommate issue isn’t because I am used to having my own room. Because I shared one for large portions of my life.

Sometimes it doesn’t work out well at all. Right now, it is ok. Not the worst roommate arrangement I have had, but not at all ideal.

I’ve lived with my best friend for a summer, and that worked out wonderfully. We each had our own rooms, and a nice big kitchen and baked lots of delicious things and watched a lot of cooking shows and House Hunters and Say Yes to The Dress together. She was an awesome roommate (I maybe not so much, admittedly, but we were still super good friends after, too.)

For one summer program, I lived in a quad in a dorm room with 3 other girls. My roommate was quiet and nice and very religious and gone a lot. That worked out pretty well. We sometimes hung out and she taught me how to make bread and nothing bad particularly happened. One of the other girls in the other room was especially awesome so I hung out with her more. (And then my friend who I lived with earlier was also on campus, so I spent a lot of time with her and that group of people.)

My freshman year of college roommate was also ok. We didn’t really talk much, because she had a long distance boyfriend, but we coexisted peacefully in the same space.

Sophomore and junior year roommate was bad. Same girl. I knew it would be bad and not work out but I couldn’t figure out how to say no because there wasn’t anyone else who would have lived with her probably. And junior year I had a high enough rank on the room-pick-list, I could have gotten a single, but she couldn’t have, so that would have also been mean. Sophomore year was ok, with drifting into bad. Like when she broke up with her boyfriend of less than a week and then ate all my birthday ice cream. And then it got absolutely horrible junior year. Part of it probably wasn’t her fault, admittedly. I think both of our lives were falling apart in different ways and two people who have lost control of their lives don’t really make good living partners.

Anyway, and now there is now.

Currently, I need to find a way to tell my roommate that sometimes I just want to not talk to anyone and it isn’t that I don’t like her, it is just that I am home and home is my quiet, not-talking-to-people place.

But I haven’t told her I’m autistic yet.
Because I’ve only told a handful of people.
Because it is sort of still a processing-thinking-secret.

And it’s tricky too, because she is one of my friends from college, I guess, so I think she wants to hang out. And her program is so much less aggressively social than mine is. Or really, social at all. So I get my social fill up at school and at work because everyone is very friendly and talks and chats a lot (about fun stuff, too! Like science and food! So I enjoy it.) And then I want home to be a quiet place. But she comes home from school lonely because the people in her program don’t really talk much and wants to talk and hang out.

And I don’t want to be mean but I just need to hide.
And also sometimes she is really annoying a lot but I feel mean and petty when I say that, but really yes basically it is true.

But sometimes I am fine.

But I also don’t want to be mean and tell her I don’t actually like hanging out with her because that is mean and what if my friends told me that and are actually only pretending to like me because they are being nice, so I should be nice also. (And also because this lease is through August.) Or tell her that she is boring and talks to her family too much and too loudly. Badbadbadbad.

As soon as this lease is up, I am getting a new apartment. One where it is just me.

So that I can go in the kitchen when I come home tired and hungry. Where I don’t have to hide in my room when I need to eat. But now, I hide until I know it is safe to leave. And I can’t make food that takes a long time, even though I like cooking, because the kitchen isn’t safe. I have no snacks because I can’t make any. So I’ve been making meals at 1:00 after she is asleep and baking things then, because that is when I know it is safe.

Because right now my room is the only safe place. Because people might talk to me everywhere else (And by people, I mean my single solitary roommate.)

And it is a bad day-week-time-period, so I am NOT okay with that. But you aren’t ALLOWED to yell at people to GO AWAY DON’T TALK TO ME when it is also their kitchen.

And she has an unpredictable schedule so I never know when I am coming home if she is going to be there or not. So when I plan my evening on my walk home based on the usual pattern of her being at home or not being at home, and then I walk in the door and she is there when I thought I would be alone, it breaks. I just sink and escape to my room as soon as I can and stay hidden as long as I can.

I can’t know until I have checked out the apartment and the rooms if it is safe to finally be sad if I am sad or tired if I am tired. Because that is only safe if I am alone (or with a very few specific people that absolutely does not include roommate).

Going home is stressful because I have to escape through the apartment to get to safety. 
Everything is bad.
Sometimes it is ok, but right now everything is bad.
Life is overwhelming right now.

On Issy Stapleton, To Issy Stapleton, About Issy Stapleton

TW: Attempted murder and victim blaming, suicide mentions

This is messy. Not at all polished. Not at all well-organized or well-put together. It’s an assortment of thoughts and opinions and ideas and frustration and anger. It can’t be well put together. Because it is anger and anger is messy.

Issy Stapleton’s mother attempted to murder her.
Attempted murder is attempted murder.
Attempted murder of your child is still attempted murder.

Do we feel sympathy for people who attempt murder?
No. No, we do not.
Do we give them “our unconditional support”
No.

You know who we feel sympathy for?
The victim.
And you know who the victim is?
The person who was almost murdered.

And that is you, Issy.

But for some reason, that doesn’t seem to be the case. Instead, the response seems to be “unconditional support” towards the attempted murderer. Of stress and depression and overwhelming overwork. And “walk in their shoes” and “don’t judge” and “well, you just don’t understand.”

What is there to understand?
Murder is murder.

MURDER IS NEVER THE VICTIM’S FAULT.

But THAT NEVER ENTITLES YOU TO KILL SOMEONE ELSE. Your child’s life is not your life to take. No matter how much trouble you are having. No matter what. Your child’s life is hers alone.

And people might say it’s your fault. That it is your fault that someone tried to kill you. That it is your fault for “being difficult” and NONSENSE LIKE THAT.

It is not your fault.

And please don’t ever believe that.

It is never your fault when someone tries to kill you.

And we live somewhere where people are obsessed with criminal cases and with motives and with murderers. And with crime. And so it is hard to escape hearing about crime . I can’t even imagine how hard it would be to escape inside of the story. How hard it would be to see out and realize the way everything is twisted.

And where things are twisted against you.

And where it seems like everyone overwhelmingly agrees and gives sympathy to the one who attempted murder, and not to the victim.

But Issy, it’s not your fault.

And you, only you, should be getting the sympathy.

MURDER IS NEVER THE VICTIM’S FAULT.

Dear Issy,

I hope you recover. I hope the rest of your family will love you and take care of you. I hope you will grow up into a wonderful, amazing person. I hope you will not be ashamed of being autistic. I hope you will not blame yourself for something that is absolutely, positively, completely not at all your fault.

And I feel bad writing this and publishing this, even, because I can imagine, that after this, when you are out of the hospital, that this is not how you want to be remembered. Who wants to be remembered as the girl whose mom tried to kill her? And that the world sided with her mother?

But not everybody did.

And there are people who agree that it is not your fault.

People all over who know that it is not your fault.

It is never your fault.

There is no possible way on heaven or earth that it could be your fault.

I am so, so, so sorry that this ever had to happen to you.

I am so, so sorry that even more happened after.

And I read the comments and I read the ideas and I read the support for your mother and I am
SO
ABSOLUTELY
ANGRY

Because it is absolutely ridiculous.

I’m scared for the world.

One day I am hoping to have autistic children. (Because they will be mine, and it is likely they will be autistic.) And I promise I will never try and kill them. Because that is not what parents do. Parents are not supposed to kill their children.

I’ve wanted to kill myself before.

But there is absolutely, positively, completely NO WAY that justifies killing other people.

You are supposed to protect your children.

Did you ask Issy if she wanted to live?
Or did you think it didn’t matter?
Does being autistic mean you don’t get a choice?

Because it does matter.
Because you should protect your children.

A loving mother does not murder her children.
A loving mother does not attempt to murder her children.

That
is
absolutely
unacceptable

Selfish
Self-centered

Behavior

Why were you able to decide that it was ok?

The more I read, the less I understand. The more I think about it, the angrier I get.

Dear Issy,

Your life is valuable. So incredibly, amazingly valuable. You are valuable. You are amazing. You are wonderful.

Don’t forget that.

I’m afraid of laughter

Trigger warning: Something along the lines of bullying.

Sometimes I have problems coming up with things and writing things on here.

I’m afraid to ask for help.

I’m afraid of people learning my secrets.

I am afraid that they will know that I am not good enough.

I’ve always been afraid.

I would only ever write my diary in code, because otherwise, someone might read it and someone might know my thoughts. My secret words.

And maybe they would laugh.

My youngest cousin thought we were laughing at him (and we were, but it was just because it was so cute how he said something, and maybe hopefully we were more laughing with him than at him, but it still probably wasn’t the nicest) and he cried and cried because he thought we were making fun of him. (But then we stopped once he got upset and it makes me wonder if anything other than puns and plays on words and is safe to laugh at or is it all secretly hurtful to someone and should we stop?)

And it can hurt when people laugh.

I’m afraid of people learning my secrets.

Because then they will know what can hurt me.

Instead of just making fun of the silly things I do. Things that don’t really matter. Like the way I walk, the way I stand, the way I pronounce things…

That isn’t important.

I can handle that.

I’ve learned to.

Sometimes I even encourage it (because then I can control what they laugh at, and also because sometimes the things I do end up being funny to me, too. That’s usually the goal when I tell people about things that happened to me, in fact. Sometimes I do funny things.)

But if I tell people my secrets

and they laugh

I don’t think I could handle that.