Monday, November 1, 2010
Big News!
And now back to reality.
The all-female residence hall that I live in here on campus houses a program called the Adelia Cheever program. The Cheever Program holds meetings twice a month, and their focus is on global women's issues and social justice. I approached some people from the organization a couple weeks ago to ask if a presentation about autism might be interesting to the group, given its relevance to our community (as in, the fact that there are autistic girls in the group), and given the unique issues that women on the spectrum face. They thought it was a great idea, so I am getting to work on planning something. So far I am thinking along the lines of a presentation, but I think I am going to open with a true/false poll with some not-well-known autism factoids and some myths to get their brains moving and establish what sort of stuff they already know. I also know I want to include some movie clips, and the administrator of the group suggested going over a list of famous people with autism, so I will do that. And I am also working on developing a simulation which will make neurotypicals *FEEL* what it is like to be an autistic girl in a group social situation. So far I have come up with a way to simulate the lack of proficiency with non-verbal language and the delay that is sometimes caused in conversation due to auditory processing deficiencies + other relevant issues. So I am just working on polishing that idea up and including as much as I can without bogging them down too much for them to get the point. After we do that, I am thinking we'll have sort of an instructional discussion about how, as an NT in that sort of a situation, you can be kind and inclusive to the autistic person without being rude or totally derailing your conversation. It should be good.
I'll post more developments as they occur.
Monday, October 18, 2010
Monday, October 11, 2010
I knew that the neurodiversity movement had opponents, but I never would have imagined that these people would encounter the kinds of things they did. This is an important read.
Protest Against Autism Speaks in Columbus
On Sunday, October 10, ASAN-Central Ohio/Ohio State protested Autism Speaks' Walk Now for Autism on the Ohio State campus, a protest that lasted four hours and attracted media attention from ABC-6, 10TV, and independent journalists. (See the end of this post or click here for video footage of the protest.)
Approximately 15 Autistic individuals and cross-disability allies protested Autism Speaks' lack of family and community support, its high executive pay, its lack of Autistic representation, and its eugenic aims. Protesters heavily emphasized that Autism Speaks only gives 4% of money raised to families and local communities.
During the first half of the protest, protesters faced incoming traffic and held signs with slogans such as Listen to Me, I Have Autism, First Class Autistic, Second-Class Citizen, and Autism Speaks Does Not Speak for Me. Several interested individuals approached the group, some kind and supportive, others not. One such negative encounter involved a walker who claimed that Autism Speaks can't have Autistic leaders or board members because Autistic people are incapable of making important decisions.
During the second half of the event, protesters faced 18,000 walkers, many of whom were far more belligerent than those encountered during last year's protest. One walker screamed, "Are you all stupid?! You're all stupid!" This particular walker lunged toward the protesters and had to be pushed back by a friend and a walk official.
Others screamed, "You're a bunch of idiots!" and "How do you sleep at night?" Additionally, toward the end of the protest, a car full of walkers swerved at ASAN-OSU's faculty advisor as though they were going to hit her, and then drove off laughing. When protesters engaged in a dramatic reading of Jim Sinclair's "Don't Mourn for Us," a group of parents booed and yelled, "Go home! You suck!"
Protesters chanted at several intervals, with slogans such as Nothing about us without us! We don't need a cure! and Autism Speaks needs to listen! At one point, a group of cheerleaders grew quite loud in their chants, and protesters responded with, 2, 4, 6, 8, Autism Speaks discriminates!
Campus police and certain walk officials took great care to protect ASAN's first amendment rights, for which the protesters are incredibly grateful. So too did State Representative Ted Celeste stop by, listen, and share kind words with the protesters. The reporters were also very gracious and willing to listen.
ASAN-Central Ohio/Ohio State thanks those who were involved in the protest, including those who attended and those who assisted in planning. Individuals across the United States called and wrote cross-disability allies and Columbus media affiliates on our behalf, and many more spread the word via Facebook, Twitter, blogs, and other social media. So too did international members of the cross-disability community provide support and encouragement. Thank you. We appreciate all that you do.
http://asancentralohio.blogspot.com/2010/10/protest-against-autism-speaks-in.html
Saturday, October 9, 2010
Bullying
I was bullied relentlessly for almost all of my childhood. And it was never for anything in particular, it was just that I was "weird." I remember wondering what that could even really mean, and wishing they would be more specific so that maybe I could change whatever it was that made me so unlikeable. And when I wasn't being tormented, I was being shunned. Completely. I didn't have a friend in the world to reaffirm that I had value in the world of my peers.
I developed major depression. I don't think I ever seriously considered suicide, but I know I thought about it. Honestly I don't remember much from that time period, I guess I've blocked it out. I wonder if I would be alive today if things had continued on the way they were then. I am not sure that I would be. But in 9th grade, something intervened, and that is what I want to tell you about.
When I was fourteen I discovered Twisted Sister. Yes, the guys with the big hair from the 80's. I listened to their music and it seemed to be all about loving yourself and not caring about what other people think, and how you and what makes you happy are more important than anything anyone else can say to you. Not exactly a novel concept, I am sure I had heard it before, but for whatever reason THAT is what got through to me. THAT is what made the difference. I learned from Twisted Sister to separate how I view myself and my value from how I am treated by others.
This turned out to be a valuable skill. You may have already put the pieces together yourself, but I'll spell it out. I discovered as an adult, just this past February in fact, that the "weird" that got me shunned as a child and teenager was actually autism. It's not something I am going to grow out of, and unfortunately it is not something that adults handle much more gracefully than school children. I will probably always be bullied in some way, for the same things I was bullied for as a child. It may not ever really get better.
But now, it has almost no effect on me. It still hurts and it's still disappointing when people aren't kind to me, but I don't internalize it anymore. I know my value and nothing anyone can do or say can take that away from me. And I got that from Twisted Sister.
I wanted to write this because I see so many people feeling like they are powerless to help their children and their friends to cope with bullying. There is a way to get these kids through alive. It doesn't have to be some grand and complex cure-all that swoops down from the sky to save the day. It doesn't have to be something that we dismiss as unknown or out of reach. Little insignificant things can change a persons life, and you never know where the light at the end of the tunnel for someone is going to show itself. It can be a hug, a kind word, a dinner with family, an off the cuff remark, a coach, a priest, a grandparent, a pet, a sport, or even a musician. It doesn't take the hand of god coming down from the sky to smite bullies to get kids to develop the self-esteem and self-assurance to get them through life. All people, but kids who are dealing with bullying in particular, need to be exposed to as many positive influences as humanly possible. Because you never know when some seemingly insignificant little thing is going to make the difference, and it only takes ONE moment to change a life, and in some cases, to save one.
We can all be a part of the solution to this problem. You may be a parent, a friend, a neighbor, a coach, whatever-- whatever you are, you are something to someone. Use that relationship as an opportunity to be a positive influence. Because you never know if you could be the one that makes the difference. We have all seen enough news stories about children being put into caskets in their prom dresses because they were bullied to death before even graduating high school. We've seen enough. Don't let yourself be made to feel like you are helpless. You are not. It only takes the one positive influence that manages to break through. Just the one. That can be you.
And, on the other hand, it just takes one person, one moment, to shove someone that is teetering over the edge. Maybe one seemingly insignificant little mean thing you did can mean life or death for the person you are bullying. Don't be an idiot. Don't think that because you can make a mean comment about someone and forget about it five minutes later, that means that the person you hurt will ever forget. You never know, you could be the one that pushes a person to the breaking point. Just because you didn't purposefully stand right behind them and shove does not mean that what you did was not significant. Grow up and choose to do right by other people. Just as one person, one positive influence, has the power to save someone's life-- you have the power to push someone to end theirs. This is your chance to evaluate the way you treat people and whether or not you like what you do to the people around you. This is your chance to change. Take it.
Wednesday, October 6, 2010
A must read...
When Ari Ne’eman walked onstage at a college campus in Pennsylvania in June, he looked like a handsome young rabbi presiding over the bar mitzvah of a young Talmudic scholar.
In truth, Ne’eman was facilitating a different kind of coming-of-age ceremony. Beckoning a group of teenagers to walk through a gateway symbolizing their transition into adult life, he said, “I welcome you as members of the autistic community.” The setting was an annual gathering called Autreat, organized by an autistic self-help group called Autism Network International.
Ne’eman’s deliberate use of the phrase “the autistic community” was more subversive than it sounds. The notion that autistic people — often portrayed in the media as pitiable loners — would not only wear their diagnosis proudly, but want to make common cause with other autistic people, is still a radical one. Imagine a world in which most public discussion of homosexuality was devoted to finding a cure for it, rather than on the need to address the social injustices that prevent gay people from living happier lives. Though the metaphor is far from exact (for example, gay people obviously don’t face the impairments that many autistic people do), that’s the kind of world that autistic people live in.
Now, as the first openly autistic White House appointee in history — and one of the youngest at age 22 — Ne’eman is determined to change that.
Read More http://www.wired.com/wiredscience/2010/10/exclusive-ari-neeman-qa/all/1#ixzz11bUrmXGc
Tuesday, September 21, 2010
But you'd never know that if you read what I said on AFF this morning.
"I am in my last year at my university now. This year is much more exhausting than last year was. I feel like I am walking around naked all the time, like everybody can see that there is something "wrong" with me and I can't cover it up-- and at least sometimes that is probably quite true. I really related to what you said when you mentioned steeling yourself to go to breakfast and then being unable to do it. I do that every day for everything I do, going to meals, going to class, going to appointments, contacting professors, etc and so forth. I manage to do most things, except go to the cafeteria-- that is additionally stressful because it is so loud and busy there that I wolf down my food and run out and then get sick from eating too fast, and I am allergic to milk so I can't eat most of the food anyway. But the result is like some sort of wound is just being continually ripped open and getting more and more raw... I think that's a good way to put it... society just rubs me raw. I'm not sure what advice to give you. I just tell myself that at the end of the day, I must be successful. I don't have to be happy or comfortable, I just have to be successful, and I only have to live like that for four years and then I can forget I ever had to do this. So I am able to force myself to do most of the things I need to do, even though they are physically painful. I really don't think that's the best attitude to have, but I don't know what else to do."
That just isn't Jill. I don't know how to be Jill, the way I know her to be, and still do this.
Tuesday, September 7, 2010
I am tempted to write something about autism to post on my door. Telling people I desperately want to be friends with them but that I don't know what I need to do to get to know them or how to tell if they like me, or that when they smile at me and my return smile doesn't seem sincere it isn't because I don't like them but because making facial expressions is so unnatural to me and I haven't quite got each subtle difference between them all down. Or, you know, maybe I should talk to my Resident Adviser or maybe even the Diversity Peer Educator, whatever that means, and see if they can help. But you toe a fine line there because if you admit how badly you want to make friends, which you kind of have to do in order to get them to understand that your blank-faced standing-in-the-corner behavior isn't out of reluctance to participate, then you seem emotionally needy and nobody respects you or wants to hang out with you-- as I discovered last year, thankfully with people I don't think I'd have hung out with anyway. And of course then there is the risk of people assuming I am retarded or weird or that it will be more of a chore to hang out with me than it really is. Then there is the risk of being shunned even worse and not having anybody left but the people who feel sorry for me. And what kind of friendship would that be?
This was my first week in my new dorm, and this quote from Liane Holliday Wiley (Pretending to be Normal) has never before rung quite so true...
"I had convinced myself that my high IQ and high academic achievement record meant that I was strong enough to handle whatever came my way. In realty, they only worked to help me fake my way to a false sense of security, a security that vanished and left me cold with fear the moment it was overwhelmed by the reality of my AS challenges.
I was hit hard when I had realized smarts were not enough to make it in this world. I was turned upside down when I had to admit I could not find anyone who saw things like I did. I was crippled when I found out it took more than I had to give to make new friends. Looking back, it is really no wonder I was never able to build any friendships in college. I was not very good at figuring people out. And so it seems, no one was very good at figuring me out either. Without friendships, my version of friendships that is, I had very little support. Without peers to show me how to fit in and how to make the most of what I had, I could not stay connected. I foundered."
Friday, August 27, 2010
Saturday, July 31, 2010
A religious post...
Here is what I wrote....
In my book, the only rule I believe god cares if I follow is that I be good to myself and others to the best of my judgment and ability. I don't believe that he would turn his back on me unless I failed to do that.
At that point, someone asked me the following...
"If what you say here is true, then you should abandon your God in favor of a more righteous self. "
And here was my response...
That would be silly, since in my opinion the most righteous thing you can do is forgive those who fail as long as they are doing their absolute best. At least in a spiritual sense, it's not as though I think we shouldn't have prisons-- though I believe in them more from either a rehabilitative standpoint OR a separation-from-society-as-a-safety-measure standpoint rather than punishment.
Another asked...
"What does 'good to myself and others to the best of my ability and judgment' mean, please? No offense intended, I just want to know. Good is a very complicated subject!"
And here was my response...
It's a good question! I am not offended at all. I believe, personally, that when I encounter an ethical or moral situation, it is my spiritual responsibility to honestly evaluate what I think is the "right" thing to do-- it is so vague and there are so many varying factors it is difficult to come to a concrete correct answer, all I can do is use my best judgment and decide and hope for the best. I think that as long as I do that, my god will support me even if it turns out I have made a mistake. In my mind, the only way to make god turn away from you is for you to purposefully turn your back on righteousness-- which, to me, would mean to knowingly do something to wrong another (or yourself) and not attempt to make things right upon realizing a mistake. There are people who do this all the time. I don't believe that god approves of them doing that, and that in order to have god's support they need to fix their ways. Though, I think you'd have to be a deeply evil person for him to forsake you altogether. That's just my opinion.
When I was growing up, I was taught that the catholic god is a just and loving god and all you have to do is ask for forgiveness and he will forgive your sins, but if you're late to catechism, don't go to mass, don't raise your children as catholic, sleep with someone of the same sex, etc etc then you are going to hell. Those concepts seemed mutually exclusive to me, and I think it is much harder to end up in hell than that-- I'm not even sure if I believe in hell. I think those sorts of concepts are constructs designed by the church to manipulate the masses, I don't believe god would truly behave in that way. It contradicts everything else we are taught about him, which is what led me to atheism as a child to begin with. I don't think god would begrudge me doing what I truly and honestly believe is the right thing. I think it is much more righteous to do that than to follow some book to the letter. He gave us brains and consciences and hearts because he wanted us to use them. I believe that is a large part of what makes up the soul, and to follow them is honoring the soul he gave you. It is not easy to defy the sense of others, especially those in authority, in order to do what you believe deep in your soul is the right thing to do. It is a lot easier, for most, to go with what you are told without considering for yourself what you believe god would want you to do based on your relationship with him. I think god wants us to step up to that challenge.
ETA:
In response to this segment of conversation...
"At that point, someone asked me the following...
"If what you say here is true, then you should abandon your God in favor of a more righteous self. "
And here was my response...
That would be silly, since in my opinion the most righteous thing you can do is forgive those who fail as long as they are doing their absolute best. At least in a spiritual sense, it's not as though I think we shouldn't have prisons-- though I believe in them more from either a rehabilitative standpoint OR a separation-from-society-as-a-safety-measure standpoint rather than punishment."
I received this response...
"You forgot to mention how what you would do is related to how anything god want done. Which is what your quoted text in my post implied."
And here is how I replied...
"I just think the only thing god wants me to do is to do my best to do good for myself and others, as defined in my previous post. I organize fundraisers for nonprofits that need it, I volunteer, I advocate for those that can't, and I lend a hand to anyone that needs it as much as I can. I have devoted my entire life and professional career to public service, at a great cost to myself, and strive to find ways to do more. I hold myself to a high moral standard in my daily interactions with people and with the world around me in an attempt to respect and support all of god's creations. I believe that is what he wants from me. I believe he wants me to do anything I can do to leave this world a better place than it was when I was born into it. I believe that is what we are born to do. Anyone else is welcome to believe whatever they want."
That is all for now.
Monday, July 26, 2010
That sounds a bit like my life. Only I have to do eighteen million things a day anyway so I just end up screwing up half of them because I can only remember to do one thing at a time, and even if I have a list to remind me and go one item at a time, I still get stressed out and bogged down and eff half of them up. I wish my only job were to turn the oven off at 3pm. I feel like then I would feel normal. Which is really not normal at all and doesn't bode well for my future productivity. Well, crap.
Wednesday, July 14, 2010
Monday, July 12, 2010
Award!
It's pretty cool! Especially since at the time nominations were happening, all I had done was start the LDSA. Since then I've been working on cofounding a group specifically for people on the spectrum, and this Fall I am kicking off a new student mentoring program for freshmen and transfer students with disabilities. A big event with all kinds of LD experts coming to speak to dispel myths about LDs in academia is in the works, too. I wish I could make this kind of thing my job. I don't think I am ever going to find something more important to do than what I am doing right now.
I guess I finally figured it out. THIS is why I came to the University of Michigan.
Wednesday, June 30, 2010
Tuesday, June 29, 2010
Desperate measures: The lure of an autism cure
LEO MILIK is a success story. At age 2 he was diagnosed with autism. After his mother heard the condition could be linked to certain foods, she eliminated wheat and dairy products from his diet. Now six years later, Leo has only a mild form of the condition. He attends a mainstream school and doctors say that in a few years he could lose his diagnosis altogether.
There's one wrinkle in this tale. The diet that appears to have turned Leo around has recently been tested in a randomised, placebo-controlled trial for the first time. The researchers reported last month that it provided no evidence the diet worked.
The diet is not the only unorthodox treatment around; a range of "biomedical" therapies that purport to treat the root causes of autism have gained popularity in recent years. These range from vitamins and antibiotics through to drugs supposed to remove heavy metals from the body, and even a hormone treatment that can delay puberty.
The autism "biomed" movement is well organised. An organisation called the Autism Research Institute, based in San Diego, California, lists the hundreds of doctors and therapists who provide these treatments. There are countless websites where parents swap advice; some members speak of trying out dozens of treatments, and spending many thousands of dollars over the years.
Some say biomed has helped their child, but others tell heart-rending tales of dashed hopes. None of these therapies has been shown to cure or even alleviate autism in good-quality trials. Some are very expensive, others are difficult and time-consuming. A few are even dangerous. This raises a question: why do so many parents of children with autism opt for unorthodox remedies, some of which are no better than snake oil?
Here is the full article: http://www.newscientist.com/article/mg20627661.300-desperate-measures-the-lure-of-an-autism-cure.html?page=1
In other news, I am thinking about starting a vlog.
Wednesday, June 9, 2010
I just can't read these things without feeling nauseated. The fact that these books are basically saying, "if you don't do this COMPLETELY superficial, meaningless, and stupid thing-- NOBODY will want to be friends with you" and it's TRUE is just too much. If that's what it takes to make friends, I don't want any.
I wish somebody had told me when I was born that everything I was going to be taught about the world would be a lie. People put in so much effort to tell kids that what matters is what's on the inside and that you should never judge a book by it's cover, and that is so entirely not the way the world works at all. If you don't meet the social norm you will not be worth talking to. Your classmates won't work with you-- hell, they may not even be willing to sit within six feet of you. And not only will nobody want to be your friend, but nobody will even say hello to you. You will be invisible. It will be as if you do not exist. It doesn't matter if you follow all the hygienic rules and dress at least reasonably well, if you don't contribute to a woman's conquest to attain a higher social status, she's not going to talk to you. You aren't WORTH it if you don't look "right."
It's just completely overwhelming how stupid the world is. I am sure I must be the stupid one since I'm in the minority, but I don't care. People make no sense.
I try to just celebrate the small victories. Maybe I scratched the car trying to get out of the parking structure today, but I passed my Spanish exam. I didn't get my house guest out on time yesterday, but I actually HAD A GUEST. I didn't think to rinse out my oatmeal dish before it hardened, but I woke up on time and had time to shower and eat breakfast before school. I am not dead, injured, or failing out of school, and my relationship is still solid. I think I am doing pretty well, damn it! I just wish the world gave you credit for the small victories. They don't seem to matter to anyone but me.
Friday, June 4, 2010
disabled
Here are my thoughts:
I think a lot of people make the mistake of assuming that "disability" is an inherently negative word. I don't consider it to be. To me, it just means that I cannot do something I need to do. That isn't a bad thing to me, because I have AS-- I have a good reason. If I just couldn't do something because I suck, then I would see that as negative, but if you have a legitimate diagnosis of something that makes you in some way different, for better or for worse, that explains a difference in ability, I don't see that as a bad thing. In an NT world, I AM disabled by my autism. But in general, I don't think that makes autism a bad thing. It's just a different thing, which means that the sweeping generalizations society makes about what one can or cannot do will not necessarily always apply to me. Yes, that makes me disabled, but that doesn't mean there's anything *bad* about my condition.
Wednesday, May 12, 2010
-- When I say something is too hard, he finds a way to make it doable.
-- When I say I can't do something, he believes me unquestioningly and takes care of it if he can.
-- When he sees that I am upset, he comforts me and tries to remove the stressor even if I am being completely irrational.
-- He is always on my side.
-- He always thinks I can do more, and is there to pick up the pieces when I can't.
He is obviously meant for me. I just hope I can contribute to his life as much as he has to mine.
It is nice to have someone, an NT even, who I can be around without feeling autistic.
Sunday, May 9, 2010
She told me that an aspie student she works with has a therapist who contacted her about starting a support group at our school for students with asperger's. I told her to let me know if there is anything I can do to get that started, and at my next appointment with her I am going to bring it up again. That would be awesome in about four different ways. I am really excited about it and hope it can start up well before I graduate so I can take advantage of it. That would just be so great, to not only have a support group but one specifically for students at our school. Apparently there are loads of us, and I bet it's not just me who's walking around friendless feeling like a misfit. Maybe I could make friends that way or maybe I couldn't, but at least I'd meet people like me FOR ONCE. If I must be an alien from another planet, it'd be nice to meet other aliens once in a while at least.
Thursday, May 6, 2010
Ohhh well. I am getting my wisdom teeth out on Monday. I really don't want to do laughing gas but I will probably need to. I am not pleased. I need to get ahead in my work between then and now so I can afford to be in a vicodin induced stupor for a couple days.
Wednesday, May 5, 2010
ADHD
"I had to return to Adderall after trying to function without it and I was seriously enraged at the scrutiny that my Dr.’s office put me under. I now at least understand where the concern is coming from.
I’m old and my first diagnosis for ADHD was before we got a label. My pediatrician at the time did not want to put me on Ritalin because my dream was to work for NASA or join the Air Force and prior use of Ritalin was flagged for pilots. He had my mother give me Sudafed, 2 tablets twice a day. My teachers were great and made exceptions for me that didn’t help me “fit in” but that kept me from getting suspended. My chair would be removed so I had to stand in the back of the class but it kept me from leaning back in it and rocking excessively and in between recesses and lunch my teachers would just point at the door when I was getting wound too tight and that was my signal to take a lap around the track and come back.
I am anti-drug and if my need wasn't so great, I would avoid it all together. Because I am responsible for the wellbeing of my family, I am medicated.
For those of you that are “taking Adderall when needed” or are complaining about “feeling it” I would like you to know that for me, there is no “feeling it”. I take 60mg-90mg daily and religiously and my heart rate never increases, if I sit still for too long without some form of mental stimulation, I can fall asleep one hour after taking it. My “feeling it” is when I don’t take it. Residual ADD/ADHD is not just the inability to stay focused or one’s desire to overachieve. I fear myself when I am not medicated. I will start a bath and then agree with the kids that we should bake a cake- put the cake in the oven and realize that the bathroom is flooded- go to the garage to get the fans and heaters and be reminded that the cake is done----by the smoke alarm. I have left my truck running all day because I wanted it warm when the kids and I went to the store. Since the Tinker Toys were next to my car keys and the kids were in an awesome mood, we sat and played with the damn Tinker Toys until we were hungry for lunch---in our winter coats and scarves because we were going to the store---to get the bread for lunch. This is where the depression associated with ADD/ADHD comes in. Symptoms will often be listed as “accompanied by depression or low self esteem”. How worthless as a mother would you feel? So when I can be consistent with my medication, it is not taken “when needed”, used because “I have to work 2 jobs”, “be a domestic God”, “shred every other Scout or soccer mom”,” loose weight” or “recover from a late night of partying” it is so I can get from A to Z without blowing up B through Y in the process. So, please leave my drug alone before your recreational use leads to even stricter distribution protocol or before the medications become black labeled all together. If you are getting wired from the stuff, you have been misdiagnosed or you are over medicated. As for the recommendation of Benadryl, Nyquil, Tylenol PM and whatever else was listed above- please know that you are playing with your brain’s chemistry and those A’s that you recreational users are trying to achieve won’t be any good when you give yourself schizophrenia. Spend a few minutes with Google and look up the rates of amphetamine induced psychosis related to withdrawal and maybe common sense will set in. Maybe."
YES! Finally someone else who gets it.
Friday, April 30, 2010
An excerpt
I had convinced myself that my high IQ and high academic achievement record meant that I was strong enough to handle whatever came my way. In realty, they only worked to help me fake my way to a false sense of security, a security that vanished and left me cold with fear the moment it was overwhelmed by the reality of my AS challenges.
I was hit hard when I had realized smarts were not enough to make it in this world. I was turned upside down when I had to admit I could not find anyone who saw things like I did. I was crippled when I found out it took more than I had to give to make new friends. Looking back, it is really no wonder I was never able to build any friendships in college. I was not very good at figuring people out. And so it seems, no one was very good at figuring me out either. Without friendships, my version of friendships that is, I had very little support. Without peers to show me how to fit in and how to make the most of what I had, I could not stay connected. I foundered."
-- "Pretending to be Normal" by Liane Holliday Willey
Monday, April 19, 2010
Thursday, April 15, 2010
Experiment
I have a bit of a problem with complaining. Not usually in professional or academic situations so much as in personal conversations. Part of it is that I have no idea how to keep a conversation going. I could talk about things that make me happy-- but those are much less complex, there is no issue to be analyzed or solved, so unless the other person jumps in-- which almost never happens, I cannot maintain a conversation. Problems can be analyzed, discussed, and solved. I am a problem oriented person, not because of a general negative outlook on life-- if anything I am dangerously optimistic, but because I can and enjoy working with problems so that I can fix them. I am constantly working with problems. On the outside it seems I am overly focused on the negative aspects of my life, but that is only because I am spending most of my time FIXING them. If I had friends to go out for a drink with to feel better about failing a course maybe I wouldn't care about fixing my problems, but fending off failure is about all I have going for me at the moment! There's nothing to talk about in happy things. They make me happy. I wouldn't want to change that. End of story. Things that are annoying or troublesome are a puzzle to be solved. Happy things are just there. How do I stretch that into an entire conversation?
I have been slowly discovering over the past few years that these are not puzzles anyone wants to share with me, they find them draining. My second problem is that I have little else to talk about. My life is very complicated and very hard. It is a mixture of brief very complicated very hard periods separated by long periods of general isolation and boredom. What is there to talk about?
My only strategy at the moment to fix these problems is to try and get the other person to talk about themselves, but they wont. Even close friends I've known for years that I know aren't just trying to get rid of me. I'll ask them how their day was, an invitation to tell any story they want from the day, and they say, "fine." I ask if anything interesting happened, and get "no" or a one sentence story. Then what? Talking to NTs is like pulling teeth! I don't get it! I DESPERATELY want to talk about something other than myself, I am endlessly curious about the people around me and will listen to literally ANYTHING anyone could spew at me, but I can't get them to do it!
So, a negative consequence of my attempt to quit any and all complaining (except in the form of scathing anonymous emails to businesses and the ruling bodies of my university, who deserve it) is that I may very well have nothing else to say to anyone. But I suppose I'd rather lose touch with the few friends I have than continue to be thought of as a pathological pessimist who is work to talk to instead of fun.
Boo.
Tuesday, April 13, 2010
Saturday, April 10, 2010
My grandma said she'd help me make the blanket, but my grandpa is in the hospital right now with pneumonia, so I don't know what's going to happen. I am scared. :( I want so much for Grandpa to be at my wedding, I need at least five more years out of that man.
Thursday, April 8, 2010
Wednesday, March 31, 2010
I am getting really frustrated with it. We had 15 members at our first meeting in January and now have anywhere from 6-10 at our meetings. That isn't a big deal to me, I expected as much. But those 6-10 keep showing up every week but will not get involved, or they'll only do the bare minimum. I feel like I'd be getting a hell of a lot more done if I just did everything by myself.
Twice now they have committed to something and almost nobody followed through. One thing was my idea, one was theirs. We agreed, at my suggestion, to make a list of Do and Dont type things for professors to help them understand how an LD student should be treated, because they are regularly breaking university policy and embarrassing students in front of the whole class and discouraging other LD students from disclosing. We worked on it during the meeting and then, at the suggestion of the VP, agreed we'd brainstorm about it during the week and post more ideas to the facebook. Not one person did it.
So I made a survey for them to fill out about what expectations they had for the club that had been met, and what expectations they had that haven't been met, wondering if I'd just gone off on my own tangent and wasn't doing what they wanted to be doing.. The bottom line is that everyone wants more "fun" activities and for things to be more laid back, but they want to get more work done, too.
Okay. Contradiction number 1.
Now we have broken into committees that meet separately during the week to get shit done, at their suggestion, so we have more time for fun at the meetings. We've only done it once but that appears to be working pretty well. The committee I sit on met on Monday and the four of them decided they wanted to go to the basketball game today instead of meeting. I asked them if they really wanted to go and thought it would be fun. They said yes. I posed it to the rest of the group, they agreed.
NOBODY WENT.
I don't know what these people want from me. I feel taken advantage of. We had business to take care of this week that didn't get done because they insisted they wanted to go to the basketball game and then everyone found something better to do. Even all three of the other officers. I was too sick to go and my second, third, and fourth in command were all absent.
This is so frustrating, honestly. This summer I think I am just going to work on everything by myself. The club is never going to get off the ground if people don't get shit done, but they are not happy enough to work together no matter what I do. I literally asked them, "what do you want?" but they don't actually want what they say they want. I don't know what I am supposed to be doing to please them. It seems like nobody cares as much as I do, and that's totally fine with me, but we have to at least commit to the bare minimum here and I don't even have that anymore. I don't know why they're bothering.
Monday, March 29, 2010
If this is as good as it gets I don't want "it."
Waiting...
I spoke with my professor to explain what has been going on with class and everything and all she said was, "thank you for this detailed explanation. I will start working on your letter." So I have no idea what she'll write. Hopefully it is something helpful. Her and her class may be the biggest barriers to convincing the board that I genuinely have a disability. *sigh* Whatever happened to the days when medical professionals actually made decisions? If it's not insurance companies, it's schools.
I've told the Washington program that I will for sure be attending in the Winter. Sooner or later I need to bring up the issue of accommodations, in terms of housing and academics, and I know I should do it sooner rather than later, but ten months in advance seems a little bit excessive. I don't know. I am just afraid they'll be like "ohhhh maybe you shouldn't come after all." I don't know how to explain it in a way that won't make them think they can't work with me.
Thursday, March 25, 2010
It really kind of makes me want to be like YEAH TREATING PEOPLE THAT WAY IS WHY YOU DON'T HAVE ANY FRIENDS, but that would be insensitive and probably at least mostly inaccurate. So I don't. But I would probably be trying to befriend them if they weren't such assholes about this, and now I am not. So it's at least partly true.
But it is incredibly annoying. If we want to play the divisive game, if anything I am more high functioning than they are, but they act as if I am incapable of being a successful person and that I must have a lower IQ because good god, I have AUTISM!!!! Nevermind that they are BOTH AUTISM, and nevermind that I am actually going to school and in a relationship and not emotionally manipulating my friends by spending hours on end online insisting I am going to kill myself to fish for compliments. The few that are at least remotely rational insist that I must have had that speech delay and that is just a huge freaking deal, but I actually didn't even have a speech delay and it isn't even a big deal anyway. So whatever. (Then there are those that say they "can just tell" when someone has HFA and when they have Asperger's. Okay!)
Dear Aspies,
Stop being mean. Having autism does not give you an excuse to be indiscriminately douchey. Sometimes we are all just douchey and we can't help it, because sometimes we don't know or understand when we are being douchey, but some of you are behaving EXCEPTIONALLY douchey and it is really just not okay. Try a little harder. Some of you really do know better. Some of you don't, and you're forgiven. But some of you do.
Kthxbai
I suppose as someone who IS functional enough to know better I am probably obligated to let it go when I run into people who aren't. But I have a hard time believing that every one of them is really that irrational. I can't be the only one like me. It's hard to tell what standard to hold these people to. I'm hesitant to let go of any and all standards like it seems I need to do to not get annoyed, because that doesn't seem fair to either of us, but then I don't know where to draw the line either. It isn't as though people with autism aren't capable of being assholes just for the sake of being assholes if they feel like it like everyone else. I dunno.
I am just very, very annoyed.
Tuesday, March 23, 2010
""Live up to your message in the Bachelor of General Studies thread. Your mental health is at stake.
Please do as you said and just live life in there here in now and not online anymore.
You have spent an eternity claiming to have different LD's and whatnot just to get out of your Spanish classes. You bowed out of this silly web site like a Queen when more than one person called you out on a fair amount of what most anyone would refer to as fibbing.
I am sorry for having a good memory, btw. My memory is a blessing and a curse sometimes. For you, it is obviously a curse, but if you were not so keen on lying it wouldn't be.
Please just man up and do whatever you have to do to earn your University degree.
There is no way in God's green Earth that the majority of the claims you have made against the university are true at all and I also doubt that you are truly LD or have Asberger's at all.
It is obvious that you have spent an eternity on this web site racking your brain trying to figure out how you can get out of your Spanish requirements because you personaly do not think you should have to fufill them at all.
The persona you have created for yourself on this web site is fine and well. But the persona you have created on this web site is truly based upon your incessant lying because you personally do not wish to work with what your University has offered you period so you create more and more scenarios and various LD's and all of that online. This is not the real world, dear. This is online. No one in the real world would take your claims seriously and that is more than likely why your University did not at all.
The second someone calls ou out on your fibbing you freak out. But, shucks! All you have done is fib and fib and fib, so what do you expect.
Your University obviously made the right call. You will not accept it come heck or high water and are making excuses online to get out of what you should be doing in reality. Do you understand what I mean? You cannot circumvent the reality of your situation by fibbing online.
Move on.
And yes, drama queen, your future is very much at stake.
Personally I am tired to death of logging onto this web site and just having it be inevitable that you are fibbing and high jacking more and more threads about your shape shifting sotry of doom at the UofM.
So, I am done with this web site because of you and what little you are."
Awesome. Just awesome.
On a brighter note, I found out today that I will be interning from January to April in Washington DC. I am completely terrified to be alone for that long, and with no friends or relatives anywhere nearby, but I am excited anyway. I am obviously pretty kickass. Hopefully my grades don't drop, or I won't be allowed to go. And hopefully this opportunity will make law schools focus less on my grades. And hopefully my lack of independent life skills won't be the death of me. And hopefully I can acquire enough suits and pieces of luggage and gift cards to dry cleaning places before then. I will miss my boyfriend terribly.
Monday, March 22, 2010
I am so incredibly sick of this. I work so hard. So much harder than other people. With little to no complaint. Sure my family, probably my roommate, and my blog get an earful, nobody else knows what I do to myself to just barely cling to keeping up with others my age. And people think I am just trying to get sympathy? UGGGH.
My mom brought up an interesting point today. She suggested that perhaps because I speak and write so eloquently (her words, not mine), it makes it hard for people to believe I am disabled. Boyfriend agrees and said it probably makes it seem like I am lazy when I struggle with my things. It almost makes me wonder if life would be easier if I were mentally handicapped. Because apparently you can't be smart and disabled, and I am going to be fighting to prove what I can't do just to be allowed to do what I can do for the rest of my life. I DON'T want sympathy, I just want the world to let me do what I am good at.
On that note, the disabilities office said that I should re-petition, but they weren't optimistic about how it would go. He suggested I give up my major and become a bachelor of general studies instead so I wouldn't need a language. I will be really hurt if it comes to that. I've worked hard to earn my political science degree, and I have all but finished it already. It's just this stupid Spanish class.
Thursday, March 18, 2010
I saw this today in a forum and really liked. The person who wrote it is a mother of a college student with asperger's.
"Let's say I'm bemoaning the fact that my child always comes in last in the hundred meter dash. You might say that lots of people can't run fast - he may not be training, he may be wearing ill fitting shoes, he may be eating the wrong foods, he may be hungover on race days, he may be obese, he may not be a hard worker, he may not have the self motivation to push himself. Then I say, "he broke his leg and he's on crutches." Once you have that information, you don't keep saying, "he doesn't have the motivation, he's not working hard enough." You realize that there is a reason he can't run fast.
Executive function disorder is the reason these kids have so much trouble. "
Tuesday, March 16, 2010
Monday, March 15, 2010
- Letter from any previous language faculuty
- Documentation of disability from diagnosing physician, and a letter from them as well
- Modern Languages Aptitude Test (essentially a dyslexia and auditory processing deficiency test)
- Letter to Board explaining the reason for the petition
I did this earlier in the year because I have processing deficiencies all across the board, including auditory, that are associated with a plethora of learning disabilities (as well as ADHD, which I believe isn't technically classified as an LD.) At the time I didn't know I had autism..\
Even though everything I submitted made a strong case for a substitution, they ignored everything to focus on my MLAT score. I scored in the 40th percentile (of all women who take the test, that's how it's measured) on the MLAT and that was too high.
This was three months ago, and I have continued in Spanish. It continually kicks my ass and though I THINK I will pass this class, I don't think I will be able to pass the next two courses in the sequence. I am barely clinging to this course and won't have the background to move on. This is the third time I have taken this class.
Today I discovered that our final oral exam will consist of myself and a partner being told a topic of conversation at the time of our exam, with no chance to prep, and then we have to "engage in a conversational manner" and "make small talk" and "sustain normal conversation" and "ask appropriate questions and use appropriate tone of voice" for seven minutes. This is graded jointly. Anyone see the problem?
I asked someone at the disabilities office WTF I am suppose to do now, and he said to repetition and add the information about autism. So I guess I am going to do that. But I am still waiting for the center to mail me my documentation, and my oral final is next week, so I doubt I can complete the process before then. Furthermore, now that I've had almost a full semester with a new Spanish professor they are going to want to have a letter from her too, and I have been sick all semester so I have five unexcused absences (which personally I think isn't that bad for 11 weeks of a 4 day a week class, but I digress) and she is probably going to mention that and then the board will think I am just not trying and I'll lose. And we don't really have any forced conversations outside of this exam, I just don't get to volunteer to participate in class much, so she hasn't even witnessed the behavior I am describing AND if I pass the oral final they will use it against me. So in order to not be stuck in classes I am doomed to fail next year, I have to fail this final. There is no way to win this. Uggggh. I don't know what to do.
Sunday, March 14, 2010
Independence
Here are the results of my assessment...
Key: A - Always F - Frequently O - Occasionally N - Never
Gets up on own - R
Washes - F
Showers - F
Brushes teeth - F
Combs hair - A
Wears clean clothes - O
Eats - A
Takes medicine - A
Seeks medical care - O
Dresses appropriately for weather - A
Able to remember basic tasks/messages - O
Keeps track of belongings - F
Able to drive or take public transportation - R
Able to get to destination on time - O
Records assignments - R
Completes assignments - R
Hands in assignments - F
On time with virtually no assistance - R
May require accommodations but not monitoring/prodding - O
Is aware of some learning needs - A
Able to advocate for self or obtain an advocate - A
Able to follow academic rules - A
Will follow teacher instruction - A
Uses appropriate greetings with eye contact - F
Able and willing to communicate needs and questions - A
Affect matches circumstances - F
Able to control: Obsessions - R
Self-Stimulation - F
inappropriate responses/meltdowns - A
Able to engage in small talk - R
Able to: begin conversations - F
sustain conversations - O
terminate conversation - R
Able to engage with helping adults other than parents - A
Aware of others to extent that actions and behaviors do not adversely affect them - F
Understands basics of relationships, such as levels and associated rules, the concept or reciprocity, etc. - O
Using that as a guide, I have written myself the following to post on my wall:
Goals
- Get more sleep.
- Improve class attendance and overall grades.
- More time for boyfriend.
- More time for me.
- Reduce stress.
Helpful Behaviors
- Getting up on time.
- Going to class.
- Finishing homework in a timely fashion.
- Taking breaks when they are needed.
- Keeping myself and my living space orderly.
- Writing down things that need to be done.
- Getting chores done.
- Journaling progress.
Hurtful Behaviors
- Staying up all night.
- Spending hours on the internet.
- Procrastination.
- Wasting breaks during the day.
- Trying to do too much.
- Spending too much money.
- Losing my patience.
Saturday, March 13, 2010
Thursday, March 11, 2010
Myers Briggs Test
Rational Portrait of the Mastermind (INTJ)
All Rationals are good at planning operations, but Masterminds are head and shoulders above all the rest in contingency planning. Complex operations involve many steps or stages, one following another in a necessary progression, and Masterminds are naturally able to grasp how each one leads to the next, and to prepare alternatives for difficulties that are likely to arise any step of the way. Trying to anticipate every contingency, Masterminds never set off on their current project without a Plan A firmly in mind, but they are always prepared to switch to Plan B or C or D if need be.
Masterminds are rare, comprising no more than, say, one percent of the population, and they are rarely encountered outside their office, factory, school, or laboratory. Although they are highly capable leaders, Masterminds are not at all eager to take command, preferring to stay in the background until others demonstrate their inability to lead. Once they take charge, however, they are thoroughgoing pragmatists. Masterminds are certain that efficiency is indispensable in a well-run organization, and if they encounter inefficiency-any waste of human and material resources-they are quick to realign operations and reassign personnel. Masterminds do not feel bound by established rules and procedures, and traditional authority does not impress them, nor do slogans or catchwords. Only ideas that make sense to them are adopted; those that don't, aren't, no matter who thought of them. Remember, their aim is always maximum efficiency.
In their careers, Masterminds usually rise to positions of responsibility, for they work long and hard and are dedicated in their pursuit of goals, sparing neither their own time and effort nor that of their colleagues and employees. Problem-solving is highly stimulating to Masterminds, who love responding to tangled systems that require careful sorting out. Ordinarily, they verbalize the positive and avoid comments of a negative nature; they are more interested in moving an organization forward than dwelling on mistakes of the past.
Masterminds tend to be much more definite and self-confident than other Rationals, having usually developed a very strong will. Decisions come easily to them; in fact, they can hardly rest until they have things settled and decided. But before they decide anything, they must do the research. Masterminds are highly theoretical, but they insist on looking at all available data before they embrace an idea, and they are suspicious of any statement that is based on shoddy research, or that is not checked against reality.