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.
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.
I like physical contact with people.
It is grounding for me. I like to interact with other things that are alive. My plants are lovely, but they just aren’t very cuddly. I do like holding hands. Especially holding hands and swinging arms. I do this when I walk with my cousins. I like wedging myself into a warm pile of cousins to watch tv or a movie or talk.
When I got back to my apartment after a long day of traveling and delays (not too bad, luckily I managed to pick the only flight that day that was delayed for one hour (all the other ones between the city my parents live in and where I go to school were at least 4 hours late, and the flights the day before were often cancelled. And today is just horrible weather.) I was tired and a bit stressed. But I muddled through things and went to the store because I had no groceries. Then boyfriend came over and because I know I am safe when he is here, I stopped having to try to hold things together again.
So we cuddled and talked and I felt like I was flying away in a bad way. When that happens I flap and shake my hands and legs to try and keep me here and to feel like I am still here. Boyfriend knows my unhappy/stressed/flying away flaps. And he knows how to calm me down and hold me super tight so I stay here and don’t fly away.
When I’m feeling disconnected, physical contact, the right kind of physical contact, warm and lots of pressure can help me stay. It is important. If I’m alone, I’ll go under my heavy blankets and try to get some of it, but its not the same as a person.
I also love holding hands. I hold hands with boyfriend when we walk places. I will hold hands with most other people, too, if they will let me. (Most people don’t.) But my cousins and I often hold hands when we walk places together or are just hanging out together. I like knowing where the other person is and the warmth of their hands and the weight of their hands and swinging our arms together.
What more people will do with me is link arms and walk. A lot of my college friends would do this as we walked. It was quite nice (although a traffic impediment). I’m not sure why people seem more willing to do that than hold hands, but I don’t really understand people all that much anyway.
But I am not all that fond of hugging strangers. And to me, with my prosopagnosia and strangely large extended family, there are a lot of people that are “strangers” to me that I still have to hug.* But I was thoroughly trained into this when I was younger. So I can usually handle hugging strangers even if I do not like it. Especially when they are actually little old ladies who are related to me.
On that note, I am also rather annoyed by the fact that shaking hands seems to be coming less and less popular and common. I was at a work party for boyfriend, and as we were leaving and saying goodbye, several people insisted on goodbye hugs. At a formal work event (for a formal accounting company, too) and to me, too, who they had literally met at the beginning of the party. Admittedly, alcohol was involved, but I just don’t understand why shaking hands isn’t a thing in those circumstances. I can tolerate hugging the strangers that are actually family, because you do weird things for family. But why on earth would you want to hug one of your coworkers girlfriend who you met two hours ago? Anyway, people are strange.
I am autistic and I love physical contact.
I am just specific on the people and kinds.
I am the oldest sister.
I am the safety police. I will tell you when you aren’t wearing your seatbelt correctly. I will pull the car over and not drive until you fix it.
I am probably also the fun police.
I was considered old when I was 10. Old enough to help and have responsibilities and to be the bigger person. I believed in Santa Claus until I was 14. You (youngest sister) were still considered the baby at 10. Not expected to be in charge or responsible. But you also stopped believing in Santa Claus far before 10.
One of you is 2 years younger. One of you is 7 years younger. (Also, this is very confusing use of you, because mostly it is plural, but sometimes it is singular).
I am in charge of making sure we have everything. Of making sure everyone is here and gathered.* I will make sure we have all the tickets before we leave. I will make sure we have the maps. I will check for food and drinks, so that no one gets grumpy.
I will wake you up for school so we aren’t late. I will feed the animals in the morning so we aren’t late. I will drive to and from school while you fall asleep in the car and I listen to NPR.
I will spend hours and hours helping you with homework. Proofreading essays. Explaining algebra. Explaining calculus. Explaining organic chemistry. Because that is what I am expected to do.
Younger siblings are in charge of making the messes.
Of having the dance schedules and soccer schedules that rearrange our lives. I will drive to pick you up and do my homework in the car. I will wait after school for several hours because you have practice and people aren’t going to drive twice to pick me up then come and get you an hour later. But it is ok. I will do my homework at school and in the car.
I am in charge of cleaning them up.
I will stop doing my homework to help you with yours. I will arrange skype calls to help you at home to help when I am at college. I will make time in between my 3 jobs and classes and research to answer your questions. Because that is expected of me.
I am certainly not the fun sister. But I am reliable.
I will make sure you buy your flights home.
I will wake up early to check us in for our flights.
I will sit there when you yell at me for not ever understanding how hard it is to be the youngest. Because you don’t know how to be the oldest. (And if you hit me, I’ll hit you, too.)**
And even though we are all basically adults now, I will still keep an eye on you when we are out. I will make sure I always know where you are. Because that is general basic safety.
When I am home on vacation, I do your chores because you have homework and you’re busy.
I can’t tell you that anything is wrong with me. I can’t tell you about the depression*** or the autism (except actually the autism probably will get told eventually because it isn’t actually wrong), because my job is to fix problems. It isn’t to create them. But I can listen to you tell me about how you don’t have a boyfriend.
But it is ok, because you will go to the stores and buy me clothes so I don’t have to. Or have me sit in the dressing room and bring back sets of clothes for me to try on so I don’t have to go to the store. You will put my hair up in nice ways for school dances. You will introduce me to people.
You ordered for me at restaurants until I was in high school. You are the one in charge of asking for directions if we ever get lost (which admittedly, usually happens when I let you navigate.) You are the one who talks to strangers. You tell me who people are when I can’t recognize them.
You bring home new books. You go to strange places and bring home stories and magical cloth covered in sparklies and mirrors and bracelets and camels and birds.
And we played with our guys and our horses and our stories and shared books. And climbed trees and swam and fought dragons and dressed up our dogs in our parents clothes and made potions out of mud and plants and made forts.
And you are my younger sisters. So it is ok.
*Although one time I didn’t and I lost my youngest sister and we had to call the police and everything and that was problematic, although it wasn’t even all my fault and I handled it quite well, I thought. And also then I didn’t have to babysit for a while.
**Siblings hit each other sometimes. We probably should stop now that we are adults. But we don’t do it all that frequently, so it is probably all food.
***But really, that’s a really secret, secret thing mostly. I don’t tell most people. I only told my parents because I was on their insurance and I sort of needed medication and they would get a bill for it. (They were really helpful and understanding about it.) (Mostly, I just tell boyfriend.) (But this isn’t really the point of this.
Also sorry about the creepy face-blur thing. But I liked the picture, and some people can recognize faces and that sort of thing. And I also like being a secret.
TW: Depression and anxiety and suicidal thoughts. And something along the lines of thinking a disability doesn’t count or isn’t real.
In which you learn how I am secretly a horrible person.
My freshman year roommate and I generally got along. We weren’t really friends, and had rather different schedules, but were generally respectful and would study somewhere else when the other person needed to sleep and get dressed quietly with minimal light-turning on to not wake up the other person. She’s actually a cool person and I think I could have been good friends with her, except we never actually talked except greetings and stuff. (She had a rather intense long distance relationship the whole year that was not going super great, so it occupied a lot of her time.)
Sophomore and junior year I lived with the same girl. When I agreed to live with her freshman year, I knew it wouldn’t work well. But I couldn’t figure out how to say no. Sophomore year was ok though. Not super great but not awful.
And then junior year hit with the depression and anxiety and suicidal thoughts. (Junior year was just not a high point in my life).
And what had been a non-ideal but still functional living arrangement really just got awful. Because I had nowhere to hide.
And my roommate was having her problems with ADHD and stuff. Which meant that she was MESSY. (Which actually wasn’t that big of a problem because I am messy too, but I am usually only messy with stuff. Not with time.) And would sleep in late. And miss classes. So times when I expected to be home alone were totally destroyed. My schedule was gone and off. And meltdown over meltdown over meltdown and I couldn’t even hide in my room, since she was in there.
I need schedules.
Especially when my world is already going to pieces, I need my schedules and my routines.
And I hated ADHD. And thought it was fake and made up. Because CLEARLY IF SHE JUST GOT OUT OF BED when her alarm went off then she could go to class. If she just went to class, then maybe she wouldn’t have been failing her classes. Or maybe if she studied instead of internetting all the time.
I just didn’t understand why she couldn’t try harder.
Or why she kept missing her classes.
And to be honest, I still don’t really.
I don’t understand how someone can’t just sit down and do their work.
Or just wake up when the alarm goes off.
And then a couple years later, my youngest sister, who I’ve never gotten along with great, was in high school. And did a really bad job freshman year. And so my parents got her tested and found out that she had ADHD. And this made me even more mad and I decided ADHD was even more fake.
This is the sister who yells at me that I don’t know what it is like to be her because people like her and they don’t like me. And she has friends. And that’s important. And I just wouldn’t understand. And how she has other things that are important like sports. And I just don’t understand what it is like to be bored in class. (Also false, I didn’t learn a single thing in a math class until we got to the proofs in geometry in high school.) And who is generally difficult. And who lies to our parents so she can go do things she wants to do. (This is a big one. Even Medium Sister, who was much more social and fought a lot more with our parents than I did, never lied to them. Our parents are generally fair, reasonable people who just want us to succeed at life and be happy, decent people.) And she even lied about being sick to get out of school sometimes (something, again, I never did even though I hated school sometimes because lying was wrong. And incorrect.)
So it seemed perfectly reasonable to me that Small Sister was using this to get out of doing school work. Or other work. And to make things fit her life.
(And also I was mad at my parents for getting her tested but never thinking about it with me, even though I did go through various periods of life where it would have probably been somewhat obvious. But I was quiet and didn’t make trouble. And apparently, if you made trouble, then you got excuses. And that wasn’t fair at all.)
And I just didn’t understand why someone couldn’t just sit down and finish their homework.
Or why they would lie about things.
Or why they wouldn’t ask for help if they didn’t understand things. There are tons of people in my family that can help with math.
Or why she didn’t follow the rules my family has created about not forgetting things at home (homework isn’t done until it is in your backpack and your backpack is in the car.)
There are so many things that just don’t make sense to me.
But then again, I also don’t understand how people could have trouble with basic calculus. Or be biology graduate students and not understand how to look at simple recombination or complementation data.
Or how people can talk to other people without needing to take naps afterwards.
Or how people can just go up to random strangers and ask them for directions.
Or how to talk to a professor during office hours.
Or how to call and order food from a restaurant.
Or how people can remember other people’s faces.
Or how to remember to take a shower every day.
But I can not understand things about other people and not be a jerk about it. Because I’m sure there’s a lot of things people don’t understand about me. And I’d appreciate if they weren’t jerks about it either.
And I can not understand something and still know that it is a real experience for other people. Even if I don’t really understand it.
Just so you know, there is swearing involved in this post. Well, actually, there is censored-out swearing involved that you can probably figure out.
I’m usually pretty careful with my word choices. So generally, I don’t swear. There’s a lot of reasons why.
Because the words you use determine the image people have of you, and that is important. And I’ve been taught that swearing, or at least indiscriminate swearing, can make people think that you are crude. Or rude. Or generally unpleasant. And even if this isn’t entirely accurate (or if it isn’t important or even true), I’ve also just been thoroughly taught not to swear. It upsets my mom and I do not like upsetting her.
Also, I have a really bad location-situation-filter. So the whole thing about code-switching, not something that happens for me. If I let a word enter my vocabulary, it will come out at bad times. In job interviews or when talking to my grandparents or babysitting. Especially swear words, because those are words that you use in times of emotion or without thinking quickly or when surprised or whatnot.
Also, most swear words I don’t know the precise meaning of. Or if I do, the meaning doesn’t usually seem to make sense with what I want to say. So it just seems a bit inaccurate to use them just for the shock value. Or—well, I don’t really know what other reasons, since for me at least, it doesn’t accurate express anything. (People who swear, why do you swear? I’m interested!)
But that is not the main reason I don’t swear.
Most of the commonly used swear words have weird effects on me.
For instance, f***. (I started with the original word in there but just looking at it while editing hurt. So now it is censored, even though I think word censoring is sort of silly and we probably all know what this word is. But this way it doesn’t hurt to look at. It just makes me keep looking for footnotes, which are nonexistent in this post). I hate that word. When I hear it, it is like my mouth is full of cardboard and there is cotton balls stuffed in my ears. I can feel the tiny cotton threads. And it takes a long time for that feeling to go away. It is physically painful. And some people throw that word around all the time.
And this is why I hate it when other people swear. Because it is physically painful. But I also don’t want to be language police. Or control what other people say. And it’s not because of fussy reasons, or whatever. People should be entitled to use whatever language they want to. They should be able to swear if they feel they need to.
But it is also physically painful.
And it is really hard to explain to people “please stop using that word, it hurts me” because it is not the meaning of the word that bothers me. It is the feeling of the word. So usually I ignore it. Or move away if I can. Or I will say something about the volume. Or maybe there are children present and I can point it out. (But I can’t make up a fake reason to stop because that is FALSE.)
So if I ask you to stop swearing around me, that is probably why. The words hurt my ears (or my head or my mouth or my eyes or something) and to a level strong enough it overcomes my fear of confrontation/talking to other people.
So, I have successfully packed my life in suitcases and flown across the country.
I managed to move into my apartment, get my ID card, and figure out how to park*. All in one day. And barely even any meltdowns! (No complete ones! Just a little bit of yelling but then I got a break and a snack and it all got better).
But my mom came and moved with me, so I just have to worry about the things that only I have to do (like sign things). And I have someone to direct me and make sure I eat and make sure the days work out and there is a normal schedule and help me settle into a routine.
And that is good. Because I don’t like change. So it helps to have someone directing everything while I adjust to the EVERYTHING ALL NEW ALL THE TIME.
And then we went to obtain furniture.
Which is how I lost my car keys and my apartment keys in an Ikea. Ikeas are very large stores. It takes a long time to run trace your steps through them, especially when you got lost initially the first time going through them, so you have to figure out how to get lost again in them. But eventually we found everything, then a kind stranger helped us load everything into the car (because Wilfred aka my car is small and hard to fit a bookcase in).
And there were giant thunder and lightning storms! (On the Ikea day.) But I like lightning because it is pretty and it shows up here in bolts and we don’t really get lightning back at home. (But I do have to remember about the rain in summer bit, because getting soaked is not always fun.)
And we explored the city I’m living in and met up with my boyfriend for dinner one day after work, and I didn’t even meltdown once, even though he was later than he had planned on being initially because of work stuff and so there was a CHANGE in schedule.
And I get to set up organization schemes! I love setting up organization schemes! (I don’t do a very good job of KEEPING to them, but I love creating them.
This is what I have so far (see lovely pictures.) Dressers and hangers and clothes and stuff. My laundry basket is visible all the time so I remember to put in dirty clothes there instead of on the floor. My desk is still sort of messy… but it has BOOKS! The vegetable drawer/crisper in the fridge is not see through, so I have notes on the whiteboard telling me what is in there, so hopefully I will remember and eat them. I need to come up with a good place to keep my keys so I don’t lose them in the apartment. My roommate and I need to discuss a chore schedule.
And my new apartment is lovely and I finally have ALL MY BOOKS with me. And my room has a lovely south facing window with a patch of sun that I can curl up in and pretend I’m a cat (I gave you a picture of this too!). And I also included a picture of my bookcase, because it was very traumatic to obtain it, and also you can see my two new houseplants. They need names. My current plant (not pictured) is named Nemo.
And now I’ve dropped my mom off at the airport and am settled in LIKE A REAL OFFICIAL ADULT and have no real errands to run or anything until orientation starts Monday and I should probably go eat lunch because I’m several hours late to do that and no one will remind me anymore.
(Time to go be an adult!)
*Parking is my worst nightmare. Paying for parking is something I find incredibly stressful. It requires money, which requires consulting budgeting. And my budgeting skills are horrible, because I don’t think in quantities of money besides small (under $5) expensive but probably ok (up to $20) and really ridiculously expensive (anything over $20). So paying rent–scary. Big numbers. (And I like MATH!)
And choosing a parking spot is always stressful. Sometimes people honk at you. You have to use spatial reasoning to fit. I hate spatial reasoning.
And then often parking is in parking garages. Parking garages are one of the scariest places in the world. They are dark. They are poorly lit. They have low ceilings and weird sounds. They are confusing and full of lots and lots of things that look the same. They have people in them. They have noises. Also on tv, people always get murdered or kidnapped in them. So I don’t trust them.
At home, we quote.
When I do not like something, I say “I do not like green eggs and ham”
(The response is, “I do not like them Sam-I-am” and usually someone will respond with it).
Go dog go.
Stop dog stop.
Red fish, blue fish.
One fish, two fish.
Do you like my hat?
Yes, yes I like your party hat?
(Can you tell we like Dr. Seuss?* It’s peppered into my daily language.)
Talking in quotes is a form of echolalia, I believe. Quoting quoting quoting. Repeating things already said, either immediately or delayed.
(This one had a little star, this one had a little car.
My what a lot of fish there are.)
We have ways we say goodbye.
“Goodbye, loooove…. Goooodbye love. Just came to say gooodbyyyyyeee love, gooodbye…..”
(That was for singing at cousins. Loudly. As we chased the car down the road.)
We sing a lot. Sometimes instead of talking. Sometimes we will switch the words to fit the situations (but mostly we will just pick a song that fits the mood or emotion we want the other person to know instead and keep the original words).
Sometimes for hours, I don’t use my own words. (Sometimes instead, we just rhyme all the time.) We can craft whole conversations from things already said or written once. The sentences are already made. We just have to pick them up and say them.
My whole, extended family does it.
Is it normal? (Does it matter?)
“I don’t know, go ask your mother.”**
*Although Go Dog Go isn’t Dr. Seuss.
**That’s from Hop on Pop!
Over time, I have managed to collect quite a group of people and animals and things of that nature. Sometimes, I am sure they will pop up here from time to time, since they are part of my life. But, I am trying to keep this generally secret and anonymous, so you don’t get to learn their real names.
So, I have a family. A mom and a dad (fairly easy name wise. Sometimes I will group them as parents). I have two sisters. This is trickier. One is two years younger and one is seven years younger. I should give them names to make it easier to distinguish between them. We shall call them… Medium Sister and Small Sister.
Also, a lot of the time, when I am talking about things when I was younger, I will use we. The we is Medium Sister and I. We were generally close in age, so we did most things together.
I didn’t run until she did. I just walked everywhere. And then one day she started running. So I had to run to keep up. She ordered food for me in restaurants so I didn’t have to talk to strangers. I played with her and her friends a lot. (It was almost better than having my friend over, because then I could walk away when I wanted a break. Because I didn’t need to keep her friend occupied the whole time or stay with them the whole time like I did with my friend.)*
Small sister is good, too. She’s just a lot younger than me, so we didn’t do as much with her.
We also had a pack of cousins.** The pack was on my mom’s side of the family. It was lovely because we were all within a few years of each other, lived within two hours of each other, and were all rather strange. So this pack is often included when I talk about my family.
We also have the sort of family that comes along with that. Aunts, uncles, grandparents, great-uncles, great-aunts, people-we-aren’t-sure-how-they-are-related-to-us-but-let’s-just-call-them-aunt… On my mom’s side of the family they are all strange and lovely.
My dad’s side of the family is nice, too, but they aren’t as much part of my pack. (But if any of them ever read this and figure out who they are, I love you guys too! You’re just all younger than me!)
So with this family, it was ok that I didn’t really have friends or that they moved away so frequently. Because there always was Medium Sister (and even Small Sister) and at least once a month, we would see some part of the pack. So it was hard to be lonely. And I think that’s part of the reason I didn’t pick up my autism as soon. Because I had my family and we were all strange when we were together, so nothing really stuck out about me as being particularly strange.
And now this has rambled on a bit more than I intended, but I think that’s ok. My family is a rambling sort of family. There’s always something to branch off and pick up and discuss some more. So it makes sense that most posts about them are rambling sorts of posts.
*Also note the singular friend. I generally had one friend (other than the horrible stretch of years known as middle school). It was all good. However, they had a horrible habit of moving away every year. So that was unfortunate. In high school, I got one that stayed the whole time though. So that was great. I’m still friends with her now. She is in med school.
**We almost were a pack who ran wild in a swarm together doing things with dogs and horses and chickens. (We also have a swarm of pets, having had at one point or another, chickens, horses, goats, rabbits, pigs, sheep, dogs, fish…)
*I am used to semi-regular physical contact with people. I like short hugs. At home, we sit on each other a lot. I like physical contact. I like how humans feel warm. (So do animals. I love snuggling animals).