What do you want to do?

When people ask “what do you want to do,”I hear “what do I want to do? Guess. Then tell me.” Because you have to figure out what they want you to do. Or at least that is what I think when I hear that.

search and pick and think of what you know about them
come up with options that they are ok with
or that you think might be good
ask them and then try and see what their reactions are
then pick the one they seemed to react more positively to
give them options

never choose outright

always quiet
always waiting and watching

be quiet
don’t upset
don’t make people do things for you
don’t make people do things they don’t want

if someone is to be inconvenienced or unhappy, it should be me

I was talking with boyfriend. He asks me what I want to do rather frequently, since we spend a fair amount of time together. One day I finally got stressed enough about it that I told him this. Why did he keep asking me what I wanted to do? Wouldn’t it just be easier to tell me what he wants us to do, instead of making me guess something that would keep him happy?



When he asks me what do I want to do
it isn’t a trick
it isn’t a trap

It really, honestly 100% means what do I want to do.

I don’t have to guess what he wants to do.

I get to choose.

There is no good reason for me thinking it is a trick or a trap. Boyfriend doesn’t do that sort of thing. The only thing he ever tricks me into is saying “I love you more” so that he can say “I love you most” and win. (But that is ok.) Or at chess. But that is also sort of the point of chess, so that is more open deception, because you know people are trying to trick you.

Apparently, this is a relatively universal custom. “What do you want to do” often means just that. Literally. I am not sure where Miss Literal Girl me managed to pick up “What do you want to do?” meaning the opposite. (Although I suppose some people are awful passive-aggressive people, who actually do mean the opposite, but boyfriend isn’t and most of my family isn’t and my close friends aren’t.)

Part of this is guest-hospitality-customs. When people are over at my place, they are the guest, so they get to choose. Part of being the host is inconveniencing yourself for your guest.* But I don’t just do this with guests. I do this all the time. Anytime someone asks me what do I want to do, I try and figure out the answer. What is it that they want to do.

I think part of it is probably me being confused with specific versus general cases at some point that I don’t really remember. That tends to happen with me and my autistic brain. 
Part of it is me valuing other people’s happiness over my own. And my extremely strong aversion to disappointing people. I would rather do something I dislike doing than disappoint someone, because I am going to be unhappy either way, so they might as well be happy, is my reasoning. But I also think things will disappoint people far, far more than they do it real life. For example, me choosing to watch Princess Bride over some other movie probably wouldn’t be a big disappointment. (Of course that is a bad example, because Princess Bride is always the answer.)
Part of it is probably older-sister-stuff, where a lot of the time it was just easier to do what the other one wanted. So parts of me are just programmed into considering what other people want to do before I make decisions. (Which is totally unfortunate because somehow that missed my sisters, especially the youngest one.)

And then there is also a great big chunk of “this is the way I have always answered ‘what do you want to do questions’ and I certainly don’t know what I actually want to do” because there are so many possibilities it can be a bit overwhelming” and “often I don’t actually know what I want to do.”


Mess mess mess.

(Although that is a whole different topic, where you have to invite people to stay with you and let them stay with you, but on the plus side, you can also invite yourself to stay with them at any time.  For instance, when I travelled through Europe this summer, I visited and stayed with several family members I had never met. I just emailed them when I would be in town and let them know. And the European ones do the same when they come to the US. Because that is what you are supposed to do. You will never hear the end of it if you DIDN’T let people stay with you, or went through part of the country and didn’t visit someone. My mom still has one [second-or-further] cousin upset that she didn’t visit him when she was only 2 hours away in Canada for a competition with my sister.)


Literally…my mind works differently

I’ve been interpreting things much more literally recently.
“What’s cooking?”
Nothing… I said confused. Maybe he was talking about the microwave. But my food was on the table in front of me and the microwave is loud, so surely it would be pretty clear that there wasn’t anything in there.
“What’s the arrowhead?” was asked in discussion by a TA.
 I explained what an arrowhead was. It’s when they don’t put the line, and just have a triangle.
Luckily, I am friends with the TA, so when he told me after that he thought I was making fun of him* (although not in a mean way, more teasing, etc. stuff) I explained that no, that was exactly what I thought the questions were.
(The other two girls in my class who are in the same program also confirmed that that was just the way I act in class.)
It all worked out fine, and no one was upset at any point, but I felt bad.
And what about professors and classes where I don’t know the teachers or the TAs well?
My voice goes flat a lot when I speak in class. 
Do they think I am making fun of them, or bored, or being who knows something bad?

*[I also would read the conclusions or points from the paper word for word, if the questions could be directly answered by them, because the authors knew the material much better than I did. The wording gone into a paper is (at least a good paper) concise and accurate. Paraphrasing it would likely only serve to decrease the quality of the words.]
For the first time, I told someone I was autistic… well sort of. (The first time I told someone who wasn’t a parent, boyfriend, or a super close friend.) The first time I told anyone else at school. This happens to be the TA from above, who is also a graduate student in the lab I am rotating in.

We were chatting about clothes and why I don’t like buying new ones (he is generally dressed better than I am) and various other stuffs.

I don’t like buying new clothes for a variety of reasons largely because it requires going and talking to people in the store.

So he asked if I had ever heard of Asperger’s because it sort of sounded like me.

So, I decided, why not. It’s not really a secret. I’m up for telling people. (Also, I am not particularly great at making up misleading answers.)

“Yes, yes I have. Actually I have it.”

“Oh that’s so interesting. That makes sense.”

I was pleased by the response.* It was a general, oh that makes sense, followed by a bit of science-y autism-related stuff and a bit of confusing stuff about terminology and diagnosis and DSM V that I stopped once I realized that not everyone has quite the same level of familiarity with those terms as all my lovely internet autism peeps and eventually devolved into a conversation about brains and colorblindedness. (He’s colorblind).

*He also asked if it was a secret or if other people knew about it, which I thought was a very considerate thing to ask.

Colorblindness is also pretty interesting. You literally see the world differently.

My friend can see the NO in this clearly. It jumps out at him. I can get faint hints of it if I squint. Also, there are a lot of fun pictures here

I mean, seeing color is already such a strange thing. Because think about it! It isn’t a direct physical sensation. It’s seeing these crazy beams of light bouncing off of objects who knows how far away (ok, probably a rough estimation is valid, for instance my computer is somewhere between one and two feet away from face right now, so that is where the light is coming from, although that is sort of an unusual example, because it is emitting light, and most things that we see just reflect light.) And then we see all the different wavelengths that aren’t absorbed.

Also, colorblind people are usually better at picking out things in camouflage. Which makes sense, if they have more rods than cones, they should be able to pick out dark-light differences a lot better.

It’s crazy to think about how people are literally seeing things differently. That things so basic as green and red that are so obviously different to me can be utterly invisible to other people. And that some people see things that are barely noticeable and have them jump out right away at them.

Today I gave a presentation in class. It was a journal club style presentation, or similar, where I had to present a paper and the logic behind it. Afterwards, I talked with my professor about the presentation, and strengths and weaknesses and ways to improve. Overall, the comments were good.

It was a long conversation.

It was difficult in many ways. I was confused with a lot of what he was saying. I asked for clarification. I asked if he could say things a different way. (That is one of the most useful tools I have developed after my autism diagnosis.)

The main point was that I needed to structure my presentations in a logical order. That I need to provide the WHYS of each experiment. That I need to give more direction. That I need more transitions and implications.

This is a struggle for me.

It took a long time for me to find what he was seeing as the lack of explicit logical progression in the presentation. Because I saw it clearly. I saw the structure and the strings and the way everything was connected and I just put that on my presentation. But apparently they were not completely clear.

I think I need to be more explicit with transitions for presentations. Oh, let’s be honest. I am horrible at transitions. Or at least the way other people see transitions. I see the connections, the logical flows, and I just cannot see how other people cannot see the same things that I see.

Because I have a very different mind, in a lot of ways. I see patterns that other people don’t. I don’t see some things that they do.

So I am glad this professor spent the time to sit down with me after class, to explain three or four times until I understood it, to explain what the differences are that I need. That I need to learn to explain things in a different way.

I am not quite positive that I got it completely, but I think I am headed in the right direction.

This is something I need to learn. If I am to be a scientist, I need to be able to structure my data in a way that others will find logical. I need to be able to tell the story in a clear, orderly way, that will convince others that what I am saying is INTERESTING and CORRECT and WORTH FUNDING.

I think differently, and that’s okay.

I am in a place where it is okay to think differently.

I am in a place where it is okay to see the world differently.


So, I’m actually ok now, I think. I wrote this a while ago. Like on the order of months to years. But this is the thing I am most afraid of. (Well, depression coming back and also getting addicted to things.*) And so here is a weird-colored-visual-idea of it.

I can feel myself melting
Down back into that hole
The one I just climbed out
It’s like turning a heater on a world made of crayons
It just slips down into the ground
And the pretty colors all turn brown
And there’s nothing to do. No way to escape.
Sunk down too far to find the switch off.
Melted wax burns and it is impossible to climb.
Just sit at the bottom.
Wait for it to cool
So I can chisel steps
to find my way out

So yeah. That was a thing. I don’t really remember large chunks of my junior year for whatever this reason. I’ve just been thinking about it because I need to renew my anti-depressant/anxiety prescription (which I really was supposed to do in October, but the pharmacy made a mistake in the order when I asked if I could get a two month supply for my trip to Europe* this summer, and so they basically tripled the amount I was able to get, which was cool and convenient for me.) Because even though I think I would probably be ok now… I should probably wait for spring. Wait for the sun to come out and wait for boyfriend not to be working 6 days a week. And for it not to be a new quarter because beginnings are hard and scary.

But talking to therapists is scary. And making appointments is scary. And usually even after the short-meet-to-renew-prescription-appointments, they ended in needing to just sit and cry in my room with boyfriend there for a while. (Even with the second one who was good and not scary mean like the first one.) But that really won’t be possible at all because of schedules and also just because of how far away my room is. I suppose I have a month left so I have some time to build up some spoons to do this. To plan and discuss.

Anyway, there’s my cheerful little update.

*My family gets addicted to things quickly and easily. Both sides. In fact, both sides for at least one of my parents too. Which is why I have very careful rules regarding my allowed alcohol consumption. And why I do not like taking drugs. Even prescription ones that are good for me. Although also I am just really bad at swallowing pills and it usually takes me a couple tries in the morning. And then half of the time I forget and I have to come back home after I already started walking and it’s just no fun. And also I don’t know how I am supposed to dispose of old pill bottles, so I just have large collections of them.
**That and graduation were actually why I needed to get back on them again in the first place. Because change. Change and me are not friends.

Bouncing off the walls again… If only I had a word (for this)

Bouncing off the walls. Mostly off the desk, actually, because my neighbors are asleep downstairs, or if they aren’t, it is 12:46 and they have the right to not hear bouncing and pounding on the ceiling (and I don’t mind bouncing off the desk.) Flapping my knees up and down while sitting crisscross.

This sort of movement means something is wrong. I don’t have a word for this feeling.

I check my flow chart and it tells me I am probably tired so I should go to sleep.
It doesn’t have a solution for when I don’t want to go to sleep.
I don’t particularly have one either.

Maybe I should go to sleep.
Sleep is a good thing.
I know how to go to sleep.

I can hear the world around me.

Can you hear the sounds of the world?
I haven’t quite figured out what they all  are.

There’s a constant faint hum/buzzing noise. Maybe it’s the freeway, but I think that’s a few miles away, so it shouldn’t be that. It sounds more like a generator. I hear hums and buzzes all over the world that no one else seems to hear.

I used to think I could hear the world breathing.

The humming noise has been joined by the sounds of my apartment. Stream of consciousness never worked well for me because I can only type one at once. I need a high-throughput thought machine, a next-gen sequencer that can sequence my thoughts in real time. Then lay them out. Fancy computer cores dedicated to analyzing them. To finding the patterns. Figure out what all the intergenic regions are in my thoughts. I think I am taking this analogy too far.

It’s 12:53. I should sleep.

Bad news bears.

sad sad sad sad.

jump leg jump

bounce and bounce and bounce

I can hear the lights and the heaters and thats ok. There’s so many sounds.

This doesn’t happen every night. But it happens often.

I do not like falling asleep.

I am bad at it.

But it is necessary.

(That sleep thing.)

And this isn’t just a sleep thing because this doesn’t just happen at night. I wrote half of this months ago,  during daytime, and it’s the same movement today.

I don’t have a word for this feeling. I don’t like it particularly. I have a tendency when I move like this to start googling solutions to my problems. Not in a helpful way. But more in a “I type my answers into the google search box and hit enter and weird things come up.” I know that’s not how google works. I know typing “oh hey autism words and stuff” will not probably tell me anything. Although the first link was Nattily’s post “Oh Right, It’s Not Just Autism” so that part was cool.

It did not tell me the words for what this is though.

Because I want a name because maybe then I could find a solution.

It is a general apathetic view on life, but not with the lack of motion that apathy is. Apathy looks different. It’s much floppier and tan. It’s wanting to go do everything but not being able to get up and start anything. It is uselessness. It feels like uselessness and the ideas of uselessness look. It’s the motions of uselessness. (Not of me being useless, but just the ideas of uselessness. It’s sort of confusing, but it makes sense to me. Admittedly, it’s also 1:30AM.) That’s not quite the right word, but it’s closer than apathetic. It’s disorganization and no way to solve it.

Maybe I just need to start reading again. Up through high school, I used to read at least one book a day. I’ve got lots of book here. All my books. Maybe I need to read a book every day. Maybe that will be the solution.

It’s frustrating.

I do not like this jittery bouncing-ness.

I should go to sleep.

 I tried googling what am I feeling when I am bouncing apathetic and uselessness.

Google does not really have good answers for this.

Just like when I google what should I have for dinner, google never tells me the answer.

(Because that’s not what google is for.)

I wish I had words for this or answers for this.

I should go to bed. Or at least go to my bed. I can pick out a book and read it in bed under all the covers with only the small light that I can turn off without getting out of bed. I have all my books here. My good safe books.

Pjs. Brush teeth. Retainer. Lights off. Get into bed. Under covers. Read.

That is what I will do.

I will publish this at 1:35 and get ready for bed and then go sit in my bed with a book I have read hundreds of times until I am still and until I can fall asleep. And in the morning I will find solutions. Or at least later in the day or year or some point in time.


Also, I sort of want to make a note about things here. I feel like I’ve gotten really sloppy in all my writing on here. Lots of breaks with lines instead of writing much in whole paragraphs. Disjointed writing and disjointed words. I sort of feel weird putting up some of the sloppy, messy stuff, but really, I can put up whatever I want here about myself because it is my blog and I think it is still useful for me to write this stuff even if it is disjointed things that don’t become really coherent ever. I’m ok enough and I’ll figure things out sort of eventually and hopefully soon I’ll be able to write in paragraphs like a real adult again (slash I will have to be writing paper summaries and stuff, although usually science writing I’m pretty good at at any given time.) Anyway yeah…. Stuff and words and all that.

Cuddles and snuggles and hugs OH MY!!!

I like physical contact with people.

Wait–let me revise that. I like some kinds of physical contact with a select group of people. And then lots of snuggles and cuddles with animals.
I don’t like sudden touches. I don’t like when people sneak up behind me and put a hand on my back. Or on my shoulder. I would prefer to initiate the contact, or know it is coming.

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.

I need regular physical contact with warm, living things to stay grounded and to keep me from flying away.
Physical contact helps keep me present.

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.

Also related:
What hugs mean to one autistic person and Hugs from E. at the Third Glance


*Also, in college at Mass, everyone would hug during the sign of peace. That was a mixed bag. Because I didn’t like hugging strangers, but usually also people would hug me who weren’t strangers but that I would never ask for a hug and during my lonely time** freshman year it was sometimes the only time I got physical  contact the whole week so that was also important. But this sort of distracts from the organization. So I’m putting it down here.
**Although I did start dating boyfriend extremely early in college, I was really really shy and also a bit confused about what to do with a boyfriend, so it took a while before I really got even to the holding hands stage with him. Like several months. Eventually I figured out that boyfriends are good for hugs.