My Life with High Functioning Autism

Why can't you just fix it?

2011-10-08T08:35:00.000-07:00

So I haven't written here in a while. It's been a crazy few months, which I will update about in full later because I have other things I want to talk about right now.

I was browsing one of my forums today when I came across a thread about a college student with asperger's syndrome. A discussion was being had about how the RA could teach him a few basic social rules if he wished to help him be more comfortable living in the dormitories at the college. This led to one man coming in and posting the following...

"This is a genuine question and I hope it isn’t taken otherwise, but can Aspergers be resolved through therapy or some kind of social training? Went to a business dinner last night and had someone seated at my table who clearly had Aspergers, given the things described here. It was the most awkward night and frankly a waste of time for everyone else at the table to have to deal. I don’t understand how a 35+ year old man doesn’t understand that they can’t ask a woman out on a date three times in one evening when she obviously isn’t interested, can’t ask her if she does drugs, can’t ask if she has any interest in starting a business and when she says no, a half hour later ask ‘so you’re still not interested in starting a business’ and never senses anyone else’s discomfort as a signal to stop talking. I realize that people with this syndrome need to be taught how to act, but can’t that be done by parents from birth through age 18? I’m not clear on why this is an issue at college, for RAs etc. I also don’t understand how one can act this way and stay employed, except in certain very academic professions where academic knowledge trumps everything else -- he was in a financial field where the ability to hold a room matters as much as your intelligence. "

I provided for him the following response, which I wished to post as I think it may be helpful for others who struggle to understand as the man above did, and the desire to share this is my reason for updating the blog today...

"I understand why you'd ask that question. I know it's very difficult to understand. I have autism myself, but mine is quite mild and sometimes even I struggle when I am around people with much more severe autism than mine. Some autism symptoms can be helped through therapy, but the therapy required is intense, it is difficult, and it is very difficult to come by. As has been mentioned, asperger's was not a recognized diagnosis until not all that long ago and before then the people who had it were left with no supports. Even now we are well behind the times, my own wasn't diagnosed until I was well into my 20s because none of the doctors I had seen up to that point were educated enough on the subject to see it.

And let's say, for arguments sake, someone IS severe enough to be more easily diagnosed in this day and age... testing costs a fortune. It can be anywhere from 3 to 5 thousand dollars. Insurance usually doesn't cover it. Finding doctors that do the tests, especially on adults, is extremely difficult. Autistic people have a VERY hard time advocating for themselves and navigating this system that is difficult for normal people can be impossible for them, if they did not have the experience of trying to get diagnosed as children so that their parents could advocate for them (which I and your colleague obviously did not have, as autism diagnosis was too new when we were dependent children) it can be impossible to do.

And then let's say you get the diagnosis. Services for adults are almost impossible to find. I have yet to find ANY doctors, ANY services, and ANY help that actually applies to me-- it's all for children. Much of the medical world is under the impression that autistic children never grow up into autistic adults. Check your local library for books about autism-- I bet all but one or two of them will be about children. I've been actively looking for someone to help me learn how to cope with my autism symptoms since I was diagnosed almost two years ago and I have yet to even find a psychologist who feels equipped to administer talk therapy, or even a general practitioner who can manage to treat me when I have a cold without being grossly offensive because she doesn't have a CLUE what asperger's syndrome is and tries to tell me to just get over it. And if you can FIND someone to administer services for autism, it costs a fortune and-- you guessed it!-- often isn't covered by insurance.

And let's say you managed to get diagnosed AND find doctors to care for you (at this point you've probably won the lottery as well, so insurance isn't an issue)... autism is not curable. It often takes a very long time in very intense therapy to even see a marked improvement. It is a very, very difficult struggle.

I'm not saying your colleague isn't obnoxious and that he couldnt do better, but you have to avoid the impulse to liken him to a bratty child. Autism isn't caused by bad parenting and cannot be cured or even drastically improved by good parenting alone. It requires intense medical intervention, preferably from a very young age, and that intervention is EXTREMELY difficult to get. It's rare, it's expensive, there are a lot of quacks out there who still haven't learned about high-functioning autism and yet will try to treat you anyway and set you back further, and by the nature of the disorder it is very difficult for autistics to seek and coordinate care at that level. It's not just like your parents never telling you not to talk with your mouth full, it's like trying to permanently relocate to a foreign country where you don't speak the language and no matter how long you spend there you CAN'T assimilate. It's like trying to learn how to verbally pronounce words in a foreign language when you're deaf and can't hear what anyone is saying to you. Getting better than he is is the struggle of that man's life and is something he is going to grapple with, painfully, for the duration of his life. Try not to judge him more than absolutely necessary. It's not easy to be this way."

2011-01-09T22:40:00.001-08:00

http://chaoticidealism.livejournal.com/88097.html#cutid1

Big News!

2010-11-01T15:47:00.000-07:00

This past Friday, the University of Michigan Council for Disability Concerns awarded me with their Certificate of Appreciation at the annual Neubacher Ceremony. It was truly a beautiful experience. Not only was it a phenomenal feeling to have my work in disability advocacy recognized, but for once I felt like I was surrounded by "my people." I was in a room full of people who "get it" and who are as passionate about equality for disabled people as I am. People who aren't apathetic. People who know. People who feel the same fire that I do for service. Words can't describe the awe that I felt having been granted the opportunity to be a part of that amazing group of people for a day.

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.

2010-10-18T13:32:00.000-07:00

I hope the proposed changes to the diagnostic labels of autism in the DSM V are clarifying. I am getting tired of explaining repeatedly on and on into infinity that high-functioning autism is not low-functioning asperger's or any other such term which implies that HFAs have lower levels of function than aspies. Seriously. It gets pretty annoying to constantly have to convince people that my level of function is not inferior to theirs when I am consistently one of the highest functioning members of any autistic community I join (including those communities dominated by aspies.) Not always the highest, and I certainly have some major issues, but there is really pretty much nothing I can't do! Had I never been diagnosed I would have lived my life as an NT,gone to school, got a career, got married, had kids, yadda yadda yadda, and no one would have been the wiser, it just would have been more difficult. You cannot resolutely write me off as lower-functioning than people with asperger's just because my diagnosis is "autism" instead of "asperger's." That's not what those words mean and I am tired of having to explain it.

2010-10-11T19:18:00.000-07:00

I read an article today about a protest in Ohio against Autism Speaks, and I wanted to share it with you. I've copied the text, and the link to the original webpage is below, which has pictures of the protest.

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

Twisted Sister

2010-10-11T17:00:00.000-07:00

To add to my last post...

Proof that not all autistic obsessions are problematic! :P

Bullying

2010-10-09T14:17:00.001-07:00

I don't think I need to tell anyone that bullying has been pushed to the forefront of the media lately, and specifically teens who commit suicide as a result of bullying. Given this, I feel compelled to share my own story in the hopes that it will be enlightening to others.

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.

A must read...

2010-10-06T11:11:00.000-07:00

Exclusive: First Autistic Presidential Appointee Speaks Out

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

2010-09-21T08:07:00.000-07:00

So today I was reading Aspies for Freedom, and I came across a thread from a student with asperger's who just started college. He mentioned some of the problems he was having and asked for support and reassurance. I responded with a bit about my experience, basically just relating to what he said. I've just gone back and reread my post, and I don't even recognize myself. The kind of attitude I have is so negative and pessimistic, and I know that's how people think I am because I complain so much, but I am REALLY NOT. If I took a pessimistic attitude about my life I would probably kill myself. I wouldn't be able to deal with it. When you have as many fundamental flaws in the things that affect your quality of life (like your health, your support system, etc-- you know, the things I don't have), you HAVE to be optimistic or you won't make it. I complain about things so that I can make fun of them, so that I can vent it out and keep moving forward. I am optimistic to a fault, there is nothing that I don't believe I can fix and make better. I take every problem I hit head on with the expectation that I WILL make it better, which is really a lot of pressure to be under. That's just the way that I am. I know that it doesn't create the image of an optimistic person, but I generally have an almost delusional positive outlook on things.

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.

2010-09-07T21:16:00.000-07:00

It is a lonely feeling to sit in a room of 50 girls, being given a speech all about the program you're all about to join and what a tight knit community we'll all be, and knowing that come Springtime you very likely still won't have made any friends or established any meaningful connections with anyone in the group. Particularly when you know you have to try anyway, and particularly when you've seen this story repeat itself again and again and again. As I was explaining to someone who is neurotypical the other day, you kind of get used to this. You kind of get used to being shunned over and over and over again no matter how many times you follow that sagely NT advice of "put yourself out there," like it's really that easy. That isn't to say it ever stops being hurtful, no, if anything it gets worse. But eventually you stop trying to avoid pain. It's going to follow you everywhere you go anyway. You can't stop it and there is nothing you can do about it. Even if you're not the type to throw yourself into situations trying to make new friends, there will always be that person at the grocery store who gives you a weird look and you know that once again, whatever is so completely WRONG about you that everyone but you can see is rearing it's ugly head again, and it's not like you can just stop going to the grocery store. It's like that dream most everyone has where you realize you've gone to school in your underwear, and you try to cover up but you can't. You can't hide it, you're constantly going to be exposed and your vulnerabilities are constantly going to take hits. But there isn't any way around it. And people will tell you, oh, you just have to keep trying. And I suppose that's true, and that's why I continue to do it, however now that we are coming up on a full decade since the last time I managed to make new friends, it's hard to take people seriously when they say that. I don't think they quite understand the magnitude of the situation. Their oversimplification of the matter is even sort of insulting. Like really, I know you think you're helping, but I think if all I needed was for someone to tell me to put myself out there, don't you think I'd have done that ten years ago? It's not like I am shy and just refuse to try. I try over and over and over again and nobody is willing to meet me in the middle.

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."

2010-08-27T11:52:00.000-07:00

On curing autism...

"Would a turtle be a freer creature if it's shell could be removed?"
--Anonymous

A religious post...

2010-07-31T15:35:00.000-07:00

Recently I participated in a religious discussion on a message board, and I thought it would be nice to post my musings here. I was raised (albeit haphazardly) as a catholic, and reverted to atheism at the age of about 7. At the age of 19, I realized that stranger things have happened in my own largely insignificant life than the existence of a higher power, and I decided it would be an interesting intellectual exercise to give believing in one a try. I found it to be a healthy and rewarding lifestyle and so I have kept with it. I identify as a Christian because I use the bible and enjoy christian sermons, but I suspect most christian sects would find they don't have as much in common with me as I see myself as having in common with them.

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.

2010-07-26T23:29:00.000-07:00

"Imagine if you asked her to be responsible for turning your oven off at 3pm. She's going to be in your house all day anyway, and all she has to do is turn the oven off at 3pm. You can't ask anything else of her for that day. She has to remember to turn the oven off at 3, so she can't possible go anywhere, do anything, etc. because she has this job she has to do at 3pm."

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.

2010-07-14T21:02:00.001-07:00

I still don't know what think think of autism in Spain, however, my professor is IGNORING all the emails from my advocate at the disabilities office as she tries to set up accommodations for me. THIS IS A PROBLEM. Ugh.

Award!

2010-07-12T12:03:00.000-07:00

Today I found out that I am going to be awarded a Certificate of Appreciation at the Neubacher Award Ceremony in October, for creating a supportive community for students with learning differences.

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.

2010-06-30T14:28:00.000-07:00

Hmm. My new Spanish professor is from Spain. This makes me highly curious what the education and attitudes about autism are in Spain. I hope this works out.

She looked at me like a crazy person because I didn't know how to use a copy machine.

2010-06-29T12:25:00.000-07:00

Here is a cool magazine article I found on AFF.

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.

2010-06-09T17:06:00.000-07:00

I am reading the book "Asperger's and Girls," by a whole bunch of people. There is a section written by someone who specializes in teaching social skills to people on the spectrum, and she basically has making friends with girls down to a formula which she attempts to teach in this book.

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.

2010-06-09T15:35:00.001-07:00

It is becoming increasingly obvious that my best is never good enough. Ever. Even in the most mundane sort of ways, like makings sure my house guests leave by 10 and cleaning up my breakfast dishes. I try REALLY hard and genuinely do my best to do all the things I am supposed to do and do them right, but it's never good enough. And on top of that, my mom is a nagger, so it's almost CONSTANT nagging and correcting and scolding. And if I say I need help, or that I did my best, the response is always the same. "You're 21 years old!" Constantly reminding me of my age is not going to change anything. REALLY, it's NOT! I feel so fucking defeated every single day, and I have to wonder why I even bother trying if my efforts are never rewarded anyway since they're just never good enough.

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.

disabled

2010-06-04T18:05:00.000-07:00

So on one of my asperger's forums there is a discussion going on about whether or not autism/asperger's is a disability. The general consensus I am gleaning from this is that most everyone admits there is some huge obstacle they hit because of their autism, but they don't consider themselves to be disabled because HFA/asperger's is a GOOD thing and shouldn't be thought of negatively.

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.

2010-05-12T10:14:00.000-07:00

Reasons why my boyfriend is the best ever...

-- 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.

2010-05-09T03:42:00.000-07:00

So this week I started working with my school's "academic coach," which is essentially an executive functioning coach provided by Services for Students with Disabilities. She is really cool and she is helping me prioritize my work, and I email her every night to let her know how it goes. She is the assistant coordinator of the office so I get the impression she knows her stuff. I think it will be really helpful. Though on Friday she asked me to start charting out how I spend my time and I forgot about it until now. Um. Oops. Go figure. But it is nice to have someone hear how hard managing my life is for me and how RIDICULOUSLY hard I work to compensate and actually believe me. It is really disheartening to constantly be accused of making excuses, always having a "reason" for everything (as if that's a bad thing), refusing to cooperate, not acting my age, etc and so forth. Nobody but my boyfriend and this woman have ever really seemed to believe that I always do the best I can to do the right thing for myself and for others. Nobody else believes how hard I try to not piss anyone off or to take care of what needs to get done. And when you're going to get yelled at anyway, why bother trying? I do still keep trying but it's not as if I need my life to be any harder. Nobody ever seems to understand how hard I try. Every moment of every day I am fighting just to get through to the next moment without making any mistakes or upsetting anyone, and I just CAN'T do it. Nobody sees that. But my coach seems to understand that I need some extra consideration and some help, and that is a relief. At least someone gets it, and has the skills to provide support.

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.

2010-05-06T17:59:00.000-07:00

I wonder how long it is going to take my mom to realize that saying, "but you're 21 years old!" doesn't make me any less autistic when she is asking me to do something I apparently "should" be able to do but can't.

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.

ADHD

2010-05-05T02:03:00.001-07:00

I just found this MARVELOUS post by a woman with ADD. Hopefully she doesn't mind that I borrowed it, or alternatively doesn't find out at all. XD

"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.

An excerpt

2010-04-30T06:44:00.000-07:00

"My years in college would have presented the same kind of havoc and distress had I gone straight to a vocation. The fact that I chose to further my education was not the problem. The things I could have avoided are generic and can be applied to any other AS person making their way through life. I know in my heart and in my head, that if I had owned more AS knowledge, if I had been able to objectively understand that terms like rigid thinking, bilateral coordination problems, sensory integration dysfunction, and auditory discrimination, were very real words that defined who I was, I would have made small changes to my course. I would have gone to a smaller and perhaps more empathetic school. I would have realized I had a different set of needs and wants that set me apart from many of my classmates, but that never meant I was undeserving or incapable. And most important, I would have asked for the support I really needed.

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