the calmness checklist of a lot of people at my school

I don't want to call this "non-ASD privilege" or anything. There's already a checklist sort of like that. But I have been thinking and observing my particular situation, which is to say: grew up being stigmatized as disabled in my family, have always kind of known there is shit wrong that I have to manage (although I haven't thought about it as concretely as I do now), but have pretty much done the things that other kids with a lot of class privilege do when they are growing up. I haven't gone to a segregated school, I currently attend college, I don't see any reason to think that I will ever be in any kind of (good or bad) supported employment as people with more severe DD may be. And I don't think I will ever be in any danger of being forced to live in an institution, no matter what.

A little more than a year ago I made a YouTube video where I compared myself to a wheelchair user who when asked to describe her daily journey describes a series of places that any non-disabled person might go to. That is--the places she could go might be highly limited by which spaces are wheelchair accessible. A person can move through a bunch of places and situations that seem "normal" and are not identified as being for disabled people, but actually the person might be disabled and be quite affected in the number of options she has.

Although I think I have a ton of privilege just because I haven't always felt this trapped, I feel really trapped now (senior year). And I am surrounded by people who don't have disabilities and don't feel the same intense need to start planning their futures now for the sake of being safe. But on the surface we don't look all that different.

In fact I like my college partly because it is a very stoner/experimental/hipster/hippie/radical environment. I don't identify as any of those things, but the social environment is very comfortable for me because there's so much diversity of acceptable behavior. But this very social environment is something that really pisses me off right now. I mean, a lot of the people at my school who behave "unacceptably" do so because they think it's an interesting thing to do. They can quit any time and they don't have to structure their lives around it. Similarly, when they don't do things they are supposed to do, this is called relaxing and not worrying too much and giving themselves time. There are some things that I just can't do.

In my class where we work with kids and teenagers with DDs, we had some discussion about what a developmental delay is, and then what executive dysfunction/poor central coherence look like in people with ASD. This often degenerates into a good-humored discussion about how many people enter college and don't even know how to do their laundry, and how a bunch of guys still rely on their girlfriends to schedule everything for them, and how many friends of the person speaking don't even understand how to cook a meal. As a person who is really worried about the prospect of cooking meals and scheduling things for myself and completely wearing myself down to the bone because of how much emotional effort it takes, I don't think this is funny. And this article makes me spitting mad.

So, without further ado:

THE CALMNESS CHECKLIST OF A LOT OF PEOPLE AT MY SCHOOL
(this is very personal and kind of mean, and probably would not hold up in court)

1. I can ask for an extension without having to feel like a failure.
2. If I don't graduate on time, that's cool.
3. I can talk in class without feeling guilty for taking up people's time with my bad talking. I can even get off topic or say things that are totally stupid.
4. I can schedule meetings with my professors when I think I might be doing badly in class, because I don't worry that they will think I'm lazy or don't care about the class because of how I come off. I don't only schedule meetings in the event of being in danger of failing the class.
5. I can schedule meetings with professors just because I like them and want to become friendly with them, because I think that they'll like me too.

6. If someone expresses romantic interest in me, I don't worry how they will find out or if I should tell them.
7. If someone expresses romantic interest in me, I don't just end up avoiding them altogether because I don't want to deal with figuring out #6.
8. If someone expresses romantic interest in me, I can be pretty sure that it's not because they are academically interested in my lack of autism.

9. I'm never sitting in a class where everyone is ASD except me and someone says, "I'm really interested in not-Autistic-ness, it's so fascinating."
10. If I tell someone I'm not Autistic, they never immediately recommend that I read a book about a character who isn't Autistic written by an author who is Autistic.
11. I never have to try to figure out how to give feedback in a writing workshop to someone's story about how depressing, confusing, and annoying their sibling is because their sibling doesn't have autism.
12. Actually, I just never have to ever sit in any class where students or professors say anything about how much sympathy family members deserve for living with someone who doesn't have a disability.
13. But if someone ever did say something insulting or dehumanizing about people without disabilities, I could just say I was offended and explain why. I wouldn't have to feel like people would think I was overreacting. And I definitely wouldn't have to feel like people might be thinking, "Wow, I guess people without autism have trouble understanding other people's points of view." Or, "I guess people without autism don't understand humor." Or, "I guess people without autism have to take over the conversation and make it all about their own interests just because someone made a little comment about something related."

14. I can intentionally vomit on the steps of the library, and that's just how I am, not a sign of how I don't understand social norms.
15. I can also wear pants with holes in them and no underwear so people can see my junk (same person). Again, this isn't because I don't understand the appropriate way to dress, it's just a personal choice.
16. I can never shower and it's not because I have problems with personal care. I just don't feel like it.
17. Being out of it or overfocusing on weird things or dissociating is so fun that I actually pay people for substances that can make me do those things.
18. When I'm in a less accepting environment I can start showering and stop throwing up on the library and showing my junk to everyone and smoking so much weed, and get a regular job.

19. I don't have to worry when I am in class and the professor is sitting across from me and I'm afraid he will be making eye contact and expecting me to say something and I won't react fast enough or I won't make the right expressions.

20. When I'm at home I don't do my laundry and I don't feel bad about it. My mom doesn't tell me that I need to practice doing laundry or I won't be able to live on my own. I don't feel bad that my parents make my doctors' appointments because I'm still young and I don't have to prove that I am normal and independent.
21. When I mess up tasks like cooking, packing for trips, and cleaning my room, or get them done late, my mom doesn't tell me that I might never be able to live on my own successfully because of this.
22. My parents don't make me balance a checkbook when no one else does because I need to learn to be organized and responsible.
23. My mom doesn't cry about me when I am not feeling good. My mom doesn't cry and make me feel guilty about how she was upset by bad things that happened to me in the past. If I am feeling upset, I can just tell my parents without feeling guilty.
24. As a young teenager, I didn't wish I had a sibling so my parents could have a kid who would actually do things besides make them upset.

25. When I am interacting with service people, for example when I am eating at the dining hall, I don't worry about whether I am inconveniencing them. I don't pay much attention to what they expect from me (for example if they have a policy of checking inside take-out boxes, I will always wait to be asked by the cashier; I will never open my take-out box knowing it will be quicker to do that; and I will often bury my meal card deep in my pocket and stand there rooting in my pocket as the cashier waits and a line of people grows behind me). [a/n: yes I am the cashier in question :)] I don't worry about whether other people can understand my speech. After all, if other people can't understand what I'm saying, or are offended or inconvenienced by my behavior, it doesn't really reflect on me that much. I'm observant because I believe I am and I have good social skills because I believe I do and people should understand what I'm saying because I believe they can.

25. I might just move to any city I want if I feel like it. I am not worried about how I will get a job. Maybe my parents will send me money, that's cool. I'll figure something out.
26. It's easy to make friends. I know people will like me so I just talk to anyone. I just ramble to people about whatever I'm interested in.
27. I haven't had a paid job in a while. Wait, should I be worried about that? I'm really busy with schoolwork and friends and performance art. Of course I can get a job when I want one.
28. No matter how old I was the first time I got a paid job, I didn't feel ashamed that it had taken me so long to do what I believed a teenager was supposed to accomplish.
29. I can take time off from school if I want. I can go to grad school for fun.
30. Whatever I'm doing, I am okay.

Having written this, I've removed the word privilege. It's very scary for me to have to think about how hard it sometimes is for me to take care of myself and how much I have to plan for the future (always living with a friend, probably; I don't think living alone is safe for me). And it makes me angry how much I feel trained to think of myself as a burden.

However, I was talking to a friend my age who also is disabled and is class/financially privileged. And we ended up thinking it was maybe kind of good that we felt way too self-conscious about being disabled to just noodle around and not worry and be failures to launch. (On the other hand, watch all those people eventually launch and be way more successful than me because they're so confident in the knowledge that they're normal and people like them. Well, we'll see. I have a little time yet.)

some stuff on the horizon (like you're totally all excited about this, maybe not huh)

gay kids are trying to be productive academically, sometimes that doesn't happen but it's presently happening a little. so I don't want to write too much.

some thoughts though:

1. we can't all be Renaissance men
("look, stop freaking out about how disabled so and so is, he seems to be supporting himself" "but he can't tie his shoes and he could never go to a frat party!" "that's okay, he can wear slippers" "but some job environments wouldn't consider it appropriate to wear slippers!!" "but so and so's current boss and coworkers are okay with it" "WHY ARE YOU TRYING TO AVOID TALKING ABOUT HOW DISABLED SO AND SO IS, HE'S JUST SOOO DISABLED AAAAARRGHH I CAN'T EVEN")

2. does disorganized speech mean disorganized thought--too lazy to find what I'm talking about, but I was reading comments on a blog post by someone who was having trouble getting her kid diagnosed with ASD, and the professional she went to kept being like "no, she seems like she has some kind of psychosis because of the way she talks." some people like Amanda Baggs and Anne Corwin were saying in the comments that they speak in disorganized ways but that it just means language and thought are not very connected for them, their actual thoughts are not disorganized, it's just hard to turn them into words.

however, for me, language is me, there's nothing without it. Augusten Burrows's annoying brother said that he had to create his entire personality himself, and I feel the same. ADCN said that when I talk it sounds like I'm just thinking out loud, and that is the natural/easy way for me to talk, the way I was talking to him when he said that.

I am a poor speaker because I'm a poor thinker. I'd like to get a good rediagnosis/evaluation before I graduate from college, because it seems sensible to have it. but I'm actually worried that at this point I'm too careful about speaking coherently, and my speech won't be a complete window into my thought process the way it was 10-15 years ago.

3. "social skills don't exist," a super epic and great post which I have already written a lot of. this isn't the same as saying social impairment doesn't exist--social impairment can be framed in many ways and it is socially constructed of course, but it is REAL. but I just think that social skills aren't even real. it's a completely useless/empty concept.

first, what are "social skills"? making people like you? making friends? being able to manipulate people? making people not bully you? coming off the way you want to come off? those can't ALL BE THE SAME SKILL. what if you come off as intelligent/authoritative because you're tall? is being tall a social skill for that person? is being the same race as other people a social skill because it makes people more comfortable around you?

second, there is more than one person in the world. not everyone is taken in by the same things. and also, I guess I'm an idealist and tend to have a pretty gooey idea of connection and love. I believe there's potential for connection between various pairs and combinations of people--but not everyone gets the opportunity to connect. that doesn't mean anything as simple as saying that someone "lacks social skills." what a hateful thing to say, everyone has social skills, they're just not all the same things.

I also really love Stanley Greenspan/floortime, which is a way of actually consciously modifying your behavior to try to connect with people who have severe disabilities (for example, trying to speak in a way that isn't rough on their sensory issues, or trying to become involved in their stimming). If anything is an actual SKILL, this stuff is, and I think it's awesome--but it's not something that most people are naturally good at.

part two of what I mean

It would almost be like if everything only existed while you were looking at it so if something was important you had to look at it all the time. It's hard for me to concentrate on anything deeply because I'm afraid of what I might lose. I have a sense of having to force myself to do everything I do. I also have trouble working on longer-term projects that are upsetting to me (like transferring credits from study abroad) because I'm afraid that "looking" at them for too long could lead to a lot of distress, so I constantly "look" away, but when I do that, they cease to exist.

just found this thing I wrote a long time ago

And while we're on the subject, the whole "speak to me, don't speak to the person with me, look me in the eye, don't use simple English, treat me like everyone else" thing, said by people with physical disabilities when giving instructions on how to treat all people with physical disabilities, PROVES that people with disabilities are not automatically good at understanding how everyone wants to be treated! Someone who makes intense eye contact with me and talks in a "smart" way etc. and expects me to respond quickly, and isn't willing to accept that someone else might be doing some of the talking for me, is not treating me the way I want to be treated and is not respecting me, even though they might think they're respecting me by "treating me like everyone else." A fair amount of physically disabled people have multiple disabilities and may have trouble being "treated like everyone else" just as much as or even more than I do.

When I am in class and class ends at 3:20 and started at 2:30 (and at 2:45 I thought it would never end) and at 3:15 I got hit by this wave of bliss that I made it, and it is 3:21 when someone finishes translating a line that is two very long sentences away from the end of the assigned reading, and the professor says, “Well, let’s just finish it,” and I consider yelling, “Well, fuck you” although I like my professor, or maybe just getting up and leaving class really loudly and dramatically, because I stayed for the whole class and I sat really still, well not really still but I am still alive and so is everyone else in the class, possibly someone has looked at me for shaking and possibly there is some blood on my face and my hair bizarrely feels like it has been underwater, but possibly not, anyway I did it, here I am, but it’s not fair because my schedule says I’m allowed to go but she just fucking decided that someone has to translate all these other lines even though usually we don’t finish the assigned reading if we don’t have time, and I am so, so, so spitting mad that I write down the translation (which I haven’t done) very sloppily in my notebook with the pressure of my pen and my hand sort of slumping against the page, because writing it this way it feels like a weapon and it feels like if I could kick the legs of the table or something else I can’t do

I am so, so worried I’m going wrong again.

Admittedly I got sick and lost the whole weekend so of course I haven’t gotten my bearings very well but I. Can’t. Do. This. I can’t be like this. If I am really like this for the rest of my life, I can’t do it, I won’t be this person, I refuse to feel this way.

Let me be played

I think that expectations for staff should be based in service not control. Which is to say you should try to give someone what they want not what you think they need. The obvious response to this is "but some people run out in traffic" and that's definitely true; obviously control is called for in some cases. But I feel like staff should start from a place of trying to serve people and then if the person is actually in danger, you can try to stop that specific situation. I think controlling someone should be something you decide to do in an emergency, not something you're expected to do as a regular part of your job. I think staff should be judged on whether the people they work with are satisfied and happy.

I was reading some of Roia's posts at The Mindful Music Therapist about how she felt really judged by the staff of someone she was a therapist for because her client kept taking her clothes off during therapy sessions. She felt like they thought she wasn't competent because she wasn't able to keep the person from doing that.

This is really depressing to me because I think there are a lot of motives for someone taking their clothes off that would actually reflect well on the staff person/therapist/teacher they did that with. I'm not saying it's good that someone strips, but it could mean that they feel safe, or in my experience it could mean that they want to play a trick on their staff person and see how they respond. I feel like if someone is trying to fuck with you, that's a pretty good sign of the person wanting to relate with you and learn more about you, and also to my mind can indicate that the person is confident about expressing themselves and initiating connection with other people.

So why would anyone be seen as incompetent because a person she was working with did that?

There were some times at camp when I'd be really pissed at someone and then I would realize, "I'm upset because I'm trying to stop a man twice my age from carrying his tape player with him to breakfast. What the fuck is wrong with me?"

The answer is, a lot.

Presumably in Real Life I don't get pissed at people for carrying tape players around. Actually, a person who carries a tape player around sounds like someone I would really like. And also, if I was the parent of an adult (that is, if I was an authority figure but without the policies/rules that someone like a staff person has) I can't imagine getting pissed at my son for wanting to carry around a tape player.

One reason a person might get angry would be if they think another person is angry at them or is trying to upset them. I knew that David generally liked me and we were having a conflict because he wanted to have his tape player, not because he wanted to disagree with me for the sake of disagreeing. So that doesn't explain why I was angry.

I should mention that when I say I was angry, I don't mean that I actually yelled at anyone, but just that I realized I wanted to, and then generally backed down and felt incredibly creepy and messed up. This happened probably three times, fully, but I think there were several campers who I resented on a low level even if I tried to be positive and get along with them on the surface.

I know that staff people can't always have positive feelings toward the people they work with, because some people just don't click with each other. But in retrospect, I think that I resented a lot of people not because of anything they were or did, but because I felt I would be judged for the things they couldn't or didn't do. This was a big problem with people who were slow or spacey or had a very specific way of doing things--I would be thinking, "fuck, we're going to be late for [breakfast/activity/etc.] and people [i.e. staff] are going to think I'm not competent" or "people are going to patronize me because I can't get three people showered in forty minutes"--or, with David, "people are going to think I'm a bad counselor if David is sitting there listening to his tape player instead of participating in activities."

Which is a sign that I'd gotten the impression my environment valued control above service.* When I felt like I would get in trouble or be judged if I couldn't compel my campers to do things a certain way, that caused me to take completely innocent behavior personally. Like lots of people, David often preferred listening to music to interacting with a group--but when I felt like my job entailed getting everyone to interact in a group, wanting to listen to music became something David was doing to me. When he wouldn't participate the way I was expected to be able to get him to, then I felt I looked bad, and ended up thinking things like, "Why does he have to be so selfish? Can't he think about how his behavior affects me?"

Which is really bad because it meant that totally normal and inoffensive things about David became a source of conflict, and made our relationship less positive. Although I think we had a good relationship overall, it would certainly have been better if I hadn't been stressed about how his personality traits were going to affect me. I could certainly have served him better than I did.

*I don't want to sound so critical of the place where I worked. For example, during orientation we were told, "Some campers with autism or OCD may obsess over checking things or may want to do things a certain number of times. We have all the time in the world--if it makes someone feel better, then do stuff a certain number of times." But despite this, I still ended up feeling pressured to control my campers, and I know I wasn't the only one.

I can't let that happen though. I think my goal as a staff person should be to be patronized by other staff. I want people to tell me I'm gullible and a pushover and I'm not being professional. He's not really sick. He's not really in pain. You can't just let him do what he wants all the time! You have to hurry him up. Oh, he tries to get people's attention all the time, just ignore it. Why is he all the way over there? What is he doing? She shouldn't be talking to you like that. He's playing you.

One time at the ABA school I saw a kid tracing squares on the carpet and I reached out to do the same. His teacher said, "Don't do that! You're encouraging him."

Fuck, I hope so.

my awesome dreams

So even though my entire theater started laughing when we saw M. Night Shyamalan's name in the Devil trailer (it's amazing how universal this experience is), after reading spoilers for it, I had this dream where I was cast in the movie as the devil but was too afraid to actually go in on the day they were shooting. I think that I think movies are like plays, so we actually had to just go in and stay in the elevator all day and have scary stuff happen to us and pretend to die. I was just really freaked out and didn't go. Then the director called me and asked where I was and I said I overslept and he was like, "that's okay, we can just CGI you in" and I think he just meant for the first few scenes, and I was still supposed to go in, but I just decided not to go at all.

(After I woke up I checked online to see if my unconscious mind correctly remembered the plot of the movie and it totally did, which is impressive given the stuff you usually get wrong in dreams. I'm pretty smart. Also on the "does Geoffrey Arend suck or is he awesome" debate, I'm definitely on the awesome side. If Christina Hendricks was married to some tall guy with giant muscles, it would just be sort of whatever, but instead she is married to someone who looks like us, which means that she's probably a great person and they play video games together all the time.)

I also dreamed that I was trying to find this poem "The Thought Machine," which was someone's poem about having ASD that they posted on the Asperger's livejournal community about seven years ago. In my dream, I went to this storage building that I was pretty sure the author of the poem used, and I was prepared to break into every storage space until I found the poem. But then someone showed up when I was looking around the first place I broke into, and when I explained why I was there, he said he was the person, and he'd go and get the poem for me right away. I was sort of disappointed because I was having fun breaking in to storage areas and reading people's old books.

Then when I woke up I tried to find the poem online, but I can't. I have parts of it memorized really well so I think if it was still up I would be able to find it. It's probably cheesy but I really liked it when I was younger and used to sing it to myself all the time.

eta: Adelaide is AMAZING, here it is: aspie song.

lol, look at this kid: Ergh. If you need any more proof that the way I talk is totally fake.

I also made a post that was like "I used to think autism was cool, but what about people who are severely autistic?" and got responses that were way too awesome for me to understand at the time.

I like this one: Out of curiosity. Also this: Meds and stuff. Although I think I have talked about that stuff here/on youtube.

Otherwise I wasn't a very interesting Baby Autie, although I do like the "Ergh" post.