26 December, 2010

probably going to delete this because it makes me sound super unstable, so enjoy it while you can.

I'm going to a doctor tomorrow to hopefully get a lot of cognitive/learning testing, because even though I've been diagnosed with ASD a few times and stuff, a word like ASD isn't really useful when you are just really stupid at the things I'm stupid at. And I really want to know, and be able to tell people, exactly what's going on. My mom told me to write some stuff to talk to him about and I wrote this (but I won't say all of this obviously, but I thought you might think it was interesting):

Emotional Problems--which I understand are going to seem like the main thing, and it’s going to seem like, why am I going to a learning specialist for this stuff, but bear with me.

Anxiety, which sometimes feels like stereotypical anxiety but usually feels like a boring or distracting thing, like fatigue, or dissociation/derealization (I think this is interesting: I have a very strong sense of time and past, so sometimes people and things from a very specific time period will become unreal, while I, and people and things from other periods of my life, will still feel real), or a really strong desire for something to happen, or a desire to leave, when I’m waiting in a line or in class--like, a sudden sense of intense anger if for example someone cuts in front of me in line or my professor says, “well, let’s just stay a minute longer so we can all finish translating this”

Suicidal ideation, et. al. Mostly, I had a really strong interest in getting a traumatic brain injury by getting myself hit by a car, or jumping out a window headfirst. About the time I turned 22, it was all I could think about, since if you get a TBI before age 22, you’re classified legally as “developmentally disabled,” but if you get it after age 22, you’re classified as “elderly/physically disabled,” and you get worse services. Besides, I already have a DD since I have autism, and I’d rather get services with people like me. So I spent the days before I turned 22 thinking about how I should really probably get hit by a car. And then a few weeks later, after I’d missed the deadline to get my TBI, I started thinking maybe I should just actually kill myself. I know all this seems unreasonable, but I’m getting to the point. Just from knowing a bunch of other people with autism, I know that it’s not all that weird for me to have the kind of cognitive problems I have, but a lot of people don’t know that, even professionals. There’s no easy way to explain to people why stuff is so hard for me. I feel terrible. I feel stupid and lazy. I hate asking for extensions from professors, or help from disability services at school, and it’s really hard because I have to explain everything, and I usually feel like they resent me. I really hate the disability services person at my college, because in my brief dealings with her she’s made it really obvious that she doesn’t think I have any real problems--but I had to transfer my credits from study abroad, and I really needed help figuring out what to do, and if I didn’t do it I wouldn’t be able to graduate--so I arranged to meet with her. All I needed was for someone to sit with me while I made a list of everything I needed to do to complete the process; and she did that, but she was still really patronizing. (I’m actually not as paranoid as I sound; I know several people who have had bad experiences with her.)

Last summer, I worked at a sleepaway camp for disabled adults. I mostly really like working with other people with DDs, because it’s a more comfortable environment and I don’t have to worry whether anyone is noticing that I’m disabled, because I’m not the only disabled person there. I mostly enjoyed my job. But at one point, I had these campers who were older men with Down Syndrome and they would all get really confused when they were getting dressed and brushing their teeth and showering, and basically needed help staying on track for everything. Which is basically what I’m like, unless I try really hard and focus really hard. I wasn’t really able to shower easily, without getting off track, until I was probably 19 or 20.

So, it was really hard for me to remember everything I had to remember to help these guys get dressed, and stuff. I felt so incredibly incompetent and I felt like none of the other staff understood why it was so hard for me. I mean, most of them didn’t know I have autism, but even the people who I was more friendly with and had told--I mean, people just think autism means you’re socially awkward or something. So I was just getting so worn out, and I just couldn’t help feeling super jealous, and wishing I was more severely disabled like they were, so that it would be someone else’s responsibility to make me get dressed in the morning and take showers and stuff. And that if I couldn’t do something, people would just think that was understandable, and help me, instead of thinking I was an asshole, and I wouldn’t feel like I had to just hide it or lie about it because that’s the polite thing to do. So this is why I want a brain injury, or sometimes want to kill myself. Not exactly because of the cognitive problems, but because they’re not something I can prove, and I feel like a stupid person who’s probably just lying and being really lazy. I sort of hope that you’ll give me these tests and they’ll come back saying that I have the working memory of an 5-year-old, or something--like, I don’t even need to tell other people that, if I just knew that for sure, I’d be so happy.

But anyway.

Cognitive Problems--
shit for brains

it’s really hard to remember anything short-term. You can’t tell right now because I’m not in school, but usually I have a bunch of instructions written on my hand and on my computer keyboard so I can remember to do things. I try to keep assignment books or whatever, but it takes a lot of mental switching around to write down all the assignments, and it takes a lot to remember to look at the assignment book, so it doesn’t really work. So I put it on my computer and my hand because I don’t have to remember to look at them. As soon as I stop looking at something, it tends to disappear from my consciousness unless I try really hard to keep it there.

Also it’s hard to transition. Ever. It’s just really unpleasant to have to switch from doing one thing to doing something else, or to have my day go differently from the way I expected. For example, once I was really upset because a professor and the other people in a class told me that I would have to switch my work shifts to a different day, because the professor wanted to move the class to a different time. I didn’t know how to switch my shift because I don’t do things like that.

I just need someone to walk me through things, like, figuring out how to do stuff, but it’s almost impossible to ask someone to do that and that is why I sometimes want to kill myself--it’s not the fact that stuff is hard, it’s the fact that such stupid things are hard and it is so close to being easy. If it was just someone’s job to help me do stuff for an hour a week, my life would be completely different, but it’s not, so it’s not.

That is all I can remember right now, and it doesn’t really seem like a big deal--it even seems funny. And it is on the small scale. But if you’re actually in college and you can’t remember things and it’s hard to transition, and then you get to feeling anxious about all the things you’re trying to keep in your head, when the absolute most pleasant thing would be to forget them because you probably won’t be able to do them anyway, so you start cutting corners and dropping little things, because you don’t want to get upset; and you can’t stand to think about how things really are in terms of school, because you’re afraid you would get so upset you’d never come back from it; and you can’t really ask people for help because no one really gets or is trained for this stuff, and you don’t exactly understand yourself what is wrong...well, then, you just start thinking it would be better to die, not because you’re sad all the time or something, but just because it is the only easy answer to the question.


  1. Oh my god I relate to this so much.

    Nothing helpful to say at all, except yeah. And I want to talk to you!

  2. You're right that most people don't get this, and it's astonishing to me (as a person who feels strongly about trying to get it- not really as a person who experiences all of what you experience) that people don't seem to want to get it. (Okay, that wasn't a very clear sentence, but if you're going to delete the post, you'll probably delete the comments too.) I find it especially disconcerting that there are a lot of so-called professionals who have decided they "know" what they know and that's that. All I can say about that is: yikes!

    Well, anyway, I appreciate that you do share what you share. It's made me aware of some important things that I didn't know/realize. And I am then able to bring the new knowledge/understanding to my work. Your blogs have also helped to bring a lot more meaning and (eventually) peace to the friendships/connectionships I have (outside of work) with people who live within/on/around/over the autism rainbow.

    Thank you.

  3. It sucks that people in positions of authority can be so unhelpful sometimes. It seems like people who don't really know that much are always the ones who think they know it all. I guess the more you know, the less you feel like you know.

    I hope your testing tomorrow goes well.

  4. Good luck with your testing tomorrow.

    I have a terrible short term memory too. But a really good long term one, so I can't figure out if I should say I have a really good memory or a really bad memory, because really, I have both.

    It's hard for me to transition too. Like someone will interrupt me at work and I'll have to sit there for a few minutes afterward trying to figure out how to mentally get back to what I was doing before they interrupted me.

  5. I totally relate to what you were saying. I keep trying to find ways to live without anyone who will check up on me and make me get dressed, showered, and out the door on time. But right now I'm at home with my parents and my girlfriend is staying with us so I have three people who will come and unstick me if I get stuck and that makes everything so much easier. Like blissfully easy. I think it sucks that things are this easy when I'm home and don't have a lot of work to do, and then I get to school and have a lot of work to do and they get harder.

    Do you still need that line drawing for your tattoo? Because I finally have time to make it now. If you're gonna take this post down and I might not see your reply will you email me about this?

  6. I changed my mind, I just want a tattoo of the lion in this: http://media.lehighvalleylive.com/events_impact/photo/roger-hane-ef4bce69add68d9c_large.jpg

    would you be able to do a line drawing of it? I mean, if you have time?

    I mean...well actually if you have time could you try to do both? only if you have time. I had sort of forgotten that I asked you to do it actually, so it doesn't matter.

  7. I'll try to get both done. When you say line drawing, do you mean just thin lines or a black-and-white drawing with bigger areas of black than just lines?

  8. oh, gosh. hm I guess I mean thin lines.
    actually, just do the lion, I don't really need the other one I was just curious.

  9. I was trying to write an interesting comment about the brain injury age cutoff thing, but none of my sentences made sense. So I have nothing useful to add but "me too".

  10. its really cool to hear this from your point of view.. you always hear ABOUT it, but never from the point of view of someone dealing with it. thanks for sharing.
    i'll be praying for you and all that testing!
    philippians 4:13

  11. Though I dont know your specific situation, I too, have had alot of those thoughts, so first off your not alone. Also, I have never found the so called "professionals" to be of any help to me. Maybe what you need is something more "unprofessional" like a good friend. Most univeritys/collages have social groups for "disabled" people. sometimes that can help. I do want to mention that as you have pointed out, it does get better with age. at least somethings do. hang in there.
    as the above comments have shown, your not alone. :)

  12. I also have the thing about staying on track doing "basic" tasks, and couldn't shower without it taking at least 40 mintues till the same sort of age you mentioned.

    "I have a very strong sense of time and past, so sometimes people and things from a very specific time period will become unreal, while I, and people and things from other periods of my life, will still feel real"

    I also relate to this and short term memory problems (I have the stereotypical ASD really strong long term memory)

    Thanks for putting all that down, I'm sure a lot of people will feel a lot less alone/"crazy" from reading it.

  13. You wrote: "I just need someone to walk me through things, like, figuring out how to do stuff, but it’s almost impossible to ask someone to do that and that is why I sometimes want to kill myself--it’s not the fact that stuff is hard, it’s the fact that such stupid things are hard and it is so close to being easy. If it was just someone’s job to help me do stuff for an hour a week, my life would be completely different, but it’s not, so it’s not."

    Yeah. Even if you find someone who does that stuff, they never do it for every area where you need it. Like, we'd been searching for years for someone to help me with this for doing the household and everything, and now we finally found an agency that can do it, for 4 hours a week. But they only have 4 hours and they only do one area: help me keep the house in order and maybe shopping.

    So I still don't have anyone who can help me get through University (trying again, probably going to fail again). When I went to disability services for the University they promised a lot and for everything I asked, they said it should be possible, but they don't come through. So I struggled on my own for some months, but now I'm already burnt out again.

    Oh well. At least my house is taken care of now.

    (And I hate it when you list what you have problems with, and then people ALWAYS recommend taking a class in it. It's like no matter what you say they refuse to believe or are unable to believe that it's not that you don't know HOW to do something, but that you need prompting for each step of it.)

  14. I don't think you should take this down at all. It is your chouce though. I totally relate to this. I don't really want to have a brain injury but, I have wanted to die because of everything you mentioned and no one understands why I need help that seem so simple to them. Just all the circular way this whole process goes. It just makes me tired and want to pass away sometimes.

  15. I defintly get the wishing to me more disabled so that people will understand the disabilties you have.
    eternalstranger- I also don't know whether to say I have a good memory or a bad memory. I have "absent minded proffessor" memory. I could discuss in detail a book I read years ago, but I need a list to remind me what to take to the laundromat and I could walk past my husband without regnoizing him.