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Don’t Speak For Me — 09/24/2009

Don’t Speak For Me

Check out this awesome response to the exceptionally horrible “I Am Autism” video by Autism Speaks. Link leads to Mike Stanton’s Action For Autism blog with video and commentary.

This video is just one part of Autism Speaks’ crusade to educate the world about how horrible autistic people are and how they will destroy the happiness of anyone who crosses their path.

If you haven’t seen the Autism Speaks video, it is exactly the same as this one except for the audio, which is almost the complete opposite. Lyrics are below.

A list of responses to the Autism Speaks video
is being compiled at I Speak of Dreams.

I… Am… Autism… Speaks…

I am Autism Speaks…

I am invisible to your children. And I will be invisible to you until it’s too late.

I know where you live. And guess what? It’s no use hiding.

I have my eyes on all of you… I am watching you all.

I am Autism Speaks.

I have no color… no religion… no morals… no love….

I speak the language of despair and disease. And with every voice I steal. I grow stronger.

I work quickly to make people believe your children are suffering worse than cancer or AIDS victims.

I am Autism Speaks.

And if you’re happily married… I’ll distroy your marriage with unattainable dreams and broken promises.

Your money will fall into my hands… And I will bankrupt you… And pay myself hundreds of thousands of dollars a year.

I don’t sleep… And I’ll make sure you don’t either.

I will make it virtually impossible for you to leave your home without feeling the shame of diseased children.

I am Autism Speaks.

You have no defense against me…

Your advocates don’t have the money to fight me. And I relish your poverty.

I will make everyone think you and your children are diseased and disordered. And then… Turn on them.

I am Autism Speaks.

I have no interest in right or wrong.

I derive great pleasure out of your loneliness.

I will take away your hope.

I will rob you of your children and of your dreams.

I will make sure you will cry everyday.

You will wonder who will look after your children when you die.

And the Truth is… I… Do… Not… Care…

I am Autism Speaks.

And you are scared…

And you should be.

I am Autism Speaks.

You ignored me… And that was a Big mistake.

I am Autism Speaks…

And I speak in voices stolen from your children.

I am Autism Speaks.

Join the Protesting Autism Speaks “I am Autism” Video group on Facebook:

Don't Speak For Me Facebook Group - Protesting Autism Speaks

From Bev @ Asperger Square 8:

I Am Autism Speaks

Thanks to Turner & Kowalski for stirring things up.

Through My Eyes, sung by Thanh Bui — 08/30/2009

Through My Eyes, sung by Thanh Bui

Through My Eyes, sung by Thanh Bui is an attempt to help people get a handle on what it’s like to live with an autism spectrum disorder.

Ordinarily, a song this sweet would make me gag. I admit that in order to listen to it all the way through, my brain started translating it into a thrashier version of itself (in classic rock power ballad style). Personal musical tastes aside, I really liked this song and Thanh Bui’s beautiful voice brought me out of the thrash from time to time.

Thanks to Sharon for the link ๐Ÿ™‚

Music by Fiona Johnson. Words by Valerie Foley. Inspiration from the lives of those close to us who live with an ASD.

It will be available for download on iTunes soon. 

All proceeds to Autism Spectrum Australia (Aspect)

Autism Myths #2 and #10 — 08/05/2009

Autism Myths #2 and #10

This post was inspired by an article written by Rachel Cohen-Rottenberg and published on The Commons. More of Rachel’s writing can be found on her blog, Asperger Journeys.

Rachel’s website includes a list of 100 Myths about Autism, and her article focuses on ten of those. After finishing the article, I found my thoughts lingering on myths #2 and #10.

Myth #2: Autism is a mental illness.

Autism is not a psychological disorder. It is a neurological condition in which the brain and nervous system are highly sensitive to sensory stimuli.

When the average person takes in sensory information from the environment, he or she intuitively filters it, prioritizes it, and responds in a purposeful way. For autistic people, sensory processing works very differently. The information comes in full force, without a great deal of filtering.

For example, I have almost no ability to filter auditory information. Anywhere I go, I hear a cacophony of sounds and voices, all at the same high volume. It is difficult for me to have a conversation with a lot of sound in the background, because for me, there is very little background. Any loud, crowded, unstructured situation causes me nearly immediate sensory overload.

I also experience the visual world very intensely. I am constantly scanning my environment, looking at numerous details, and attempting to order them into some sort of pattern. Because the visual world constantly changes, my ordering process never stops. Itโ€™s only recently that Iโ€™ve realized that most people do not experience the visual world with the same intensity that I do.

– Rachel Cohen-Rottenberg

I have been misdiagnosed throughout my life. All or most of these diagnoses were mental illnesses (i.e. shizophrenia, depression, anxiety, etc.). No idea if these were also correct to some degree or other, but finding out what is really going on has been a pretty big thing for me.

Treatment is the same for most of these things, so there were no major changes as far as meds go, but finding other people like me has been a major event in my life. I feel much less alone, have been exposed to massive amounts of information and resources, and finally have a name for “what is wrong with me”. Very helpful when telling other people. Much better than what I used to tell them: “My brain doesn’t work right”, “I hear screaming in my head”, “I don’t think right”, “I am crazy”.

I am not really sure how much it matters to other people whether it is psychological or neurological. Not even sure it matters to me, except that I am a stickler for accuracy. Honestly, I don’t really know what the difference is between psychological and neurological conditions affecting the brain. My guess is that for psychological things, it is an outside factor affecting the way the brain works, and for neurological things, it is the brain itself causing the ‘problem’. Any of you docs or social workers out there know the answer?

Rachel’s description of sensory processing is exactly the same as the way I experience it. I have personally never found the words to describe it so well, but she and many other people have, allowing me to share this description with others in a way that I could not before.

I think all of these first-hand descriptions and corroborations are very important in this time where autism awareness is growing by leaps and bounds, thanks to the internet and other media. The autistic spectrum is large and the range of people’s experiences varies greatly, but the amount of similarities in thought processes, perception, and experience is definitely worth documenting!

Myth #10: Autism is a disease in need of a cure.

This statement is the focus of passionate debate.

Like many others, I do not consider autism a disease. As researchers at the Swiss Brain-Mind Institute wrote in a 2007 article, โ€œThe autistic person is an individual with remarkable and far above average capabilities due to greatly enhanced perception, attention, and memory. In fact, it is this hyper-functionality which could render the individual debilitated.โ€

At present, there is no cure for autism. I understand why some people on the spectrum might want a cure. Being autistic, even at a high-functioning level, is very difficult. For people on the severe end of the spectrum, the condition can be truly disabling.

Personally, I do not want to be cured. Autism makes me who I am, and it has given me many gifts. I am sensitive, empathetic, and artistic. I see great beauty in the world, and I feel its injustices very deeply. I am very direct in my speech, and for that reason, people intuitively trust me.

I would not want to be different. I am proud of who I am. It has taken me 50 years to discover the truth about my life. In the time remaining to me, I plan to mine that truth for all its worth.

– Rachel Cohen-Rottenberg

This is probably the most controversial myth of all. I am not even sure how I feel about it myself. As a generalization, I do not agree with it at all. Politically, I think it is a very dangerous statement. Personally, I wonder about it.

There are times in my life when I would rather have been dead than autistic. Of course at the time, I did not think of it in those terms, but I did think of it in terms of that bad things happened to me because I was different from everyone else and could not figure out how to ‘do things right’. The only way to make things better was to not exist at all. Luckily, my young black and white brain was more concerned with not making my family sad than with feeling better.

As an adult who is no longer in such constant pain, I now also realize that my best skills and attributes are most likely also due to being autistic. Of course there are many things that shape a person, but on a very basic level, I believe that being autistic has been a huge factor in becoming the person I am, not only due to genetic or physiological differences, but also due to the way people have treated me over the years as a direct result of my differences, and by my reactions to that treatment.

As a result of my own experiences, I am not always sure that I don’t want to be cured. For the most part, after several years of learning and trying to accept this, I am usually happy to be how I am. If I were ‘cured’, I would lose the best parts of myself along with the worst. My life would be easier for sure, but the price of losing myself is too high of a cost to pay.

My “choice” of not wanting to be cured has much to do with the fact that I have a loving supportive partner and family, and that I am able to gradually build my business and work for myself. As much as I feel that it is wrong to say that autism is a disease that needs to be cured, I also think that a cure might benefit many autistic people, regardless of how “functional” they are. I know those are fighting words in some circles, but I really wish they weren’t.

Project Spectrum — 04/26/2009

Project Spectrum

Project Spectrum was created to give people with autism the opportunity to express their creativity and develop a life skill using Google SketchUp 3D modeling software.

This video shows 3D models created by 4 children on the autism spectrum. Three of the models are of the child’s dream house. All are very interesting! Some of the children made paper sketches before trying SketchUp. Narration explains the children’s experience with the software compared to their experience with the paper sketches.

I wish there was something like this around when I was a kid! I wonder if it could be used to create 3D mind maps. I have found it helpful on occasion to use mind mapping software to translate the multi-planed thoughts in my head into the pictures and shapes of a mind map, and then have the software convert them to an outline of words that can be used in a way that I imagine is how “regular” people just use them automatically. Adding a 3rd dimension to a mind map would definitely make it more intuitive to use, as thoughts could be placed where they belong, rather than using lines that are too long to show a distance that would better be described by showing the thought’s proximity in space to the other thoughts.

Of course this kind of software will not benefit everyone on the autistic spectrum, but it is nice to know that a special effort is being made to give these children a new way to express themselves, especially one that is visual and 3 dimensional, AND teaches them a marketable skill in a growing industry.

For more information, go to http://sketchup.google.com/spectrum.html.

A Special Needs Girl with a Special Need to Kick Some Ass — 02/07/2009

A Special Needs Girl with a Special Need to Kick Some Ass

Chocolate, from Magnet Releasing, is a martial arts film from Thailand coming to theaters on Feb. 6th, 2009, and DVD Feb. 10th.

Directed by Prachya Pinkaew, this sweet, action-packed martial-arts drama features the debut of young female fighter Jeeja Yanin Vismitananda as Zen, an autistic savant who learns to kick heads by watching Bruce Lee and Tony Jaa movies.

Zen’s father, a Japanese gangster, has been driven out of the country by a rival Thai gang, so her mother has been forced to raise her alone. When her mother becomes sick, Zen goes on a candy-fueled rampage to collect debts from the corrupt gangsters that owe money to her mom.

Thanks to Rina for the link ๐Ÿ˜€

Shutdown — 12/24/2008

Shutdown

I was reading an article called “Shutdown: A Specific Type of Meltdown” written by Gavin Bollard this morning. Shutdown is a pretty hard thing to put into words, but he did a pretty good job of it.

Technically, there aren’t too many differences between meltdowns and shutdowns. Both are extreme reactions to everyday stimuli. … While a meltdown could be described as rage against a situation, a [shutdown] tends to be more of a retreat.

Shutdown and meltdown have always had the same meaning in my mind, the only difference being one of intensity. Gavin describes them as two separate things. I can kind of see the difference when described like that. When I was younger, I used to have both meltdowns and shutdowns. I don’t think I have meltdowns anymore. I could be wrong about that. I still have shutdowns.

There are things that affect the frequency of having shutdowns. Medicine has a pretty huge effect. If the meds are working okay, it happens much less often. Stress always makes it much more likely to happen. If my head gets loud enough, there is close to a 100% chance that I will shutdown.

For me, a shutdown is very scary. My distance from the world and everyone in it is greatly increased. Often I can not speak at all. I can hear, but the delay is longer than usual. It hurts in a way I can not describe. Almost equal parts pain and numbness. I’m not even sure that makes sense, but it is accurate. Emergency medicine can stop it, but it makes me very groggy, even into the next day. I hate that.

Gavin wrote of having “what if” and “if only” types of thoughts when shutdown. I do not have these thoughts or any others. Sometimes it is because the screaming is too loud. Sometimes because I have no ability to put words together into thoughts. I think I would like to coin the term “wordled” to describe that particular situation. Or maybe that is copyright infringement.

It is interesting to read how other people experience these types of things. When they happen to me ‘out in the wild’, I find myself in a position where I need to escape as quickly as possible, but can not communicate that need to anyone. It makes for some awkward situations and sometimes leaves people wondering what is wrong with me or thinking I am an unfriendly freak.

Unlike meltdowns, where it’s best to leave the aspie alone but in a safe place, it’s generally ok to talk in a soothing voice during a shutdown.

I agree with Gavin about the “cure”, but I wish there was a better one. For me, shutdown is often a matter of overstimulation. There is a filter that people seem to have that separates sights and sounds and colors and words and smells and textures and motions and other supposedly inconsequential stimuli. Mine does not work right. It makes the world a whole different place. Sometimes that is a good thing. But not today.

Words Crashing Inside My Head — 11/20/2008

Words Crashing Inside My Head

I was having some trouble thinking earlier and ended up looking at the wordle pix again to quiet my brain. The one below caught my eye because it is a picture of what was going on in my head. It is a pretty accurate illustration of what I mean when I say (or write) that “the words crash inside of my head”. (Click the image to enlarge) [singlepic=13,450,248,,center] The reason it is hard for me to think and read sometimes is because I don’t think in straight lines. I think in grids. Hard to explain. Some people call it thinking in pictures. For me, the pictures are more like 3D wireframe models that can be viewed from every angle and direction, including from the inside out. Nothing at all resembling a straight line like a sentence does. When I can’t see the grid and try to think in words, they do not form sentences in my head. They are individual units floating around and crashing into each other without ever making any sense. It is annoying, but I feel kind of lucky that usually the words stay together and are not further divided into individual letters or individual shapes that make up the letters. Looking at the pix and/or writing this appears to have had its intended effect. I better get back to work now before it wears off!

Yoda, I am not — 04/16/2008

Yoda, I am not

Do or do not. There is no Try.
–Yoda

I am not a Jedi, so I suppose those words were not meant for me, but from what I can tell, trying = effort and everything takes effort. Therefore, there is a try.

Went to another aspie meeting on Sunday. Not sure if I liked it or not. It was nice to see the people I knew from the other meetings and meet the new people. Other than that, it was just like hanging out with any other group of people. That was very disappointing. It started out okay. A go around introduction. Not the kind of thing I generally like, but in a group like this, it seemed appropriate.

I usually like hanging out with other autistic types because different rules apply to social interaction than with most other people. At the group on Sunday, this was not the case for most of the meeting. After the go around, things got very disorganized. People were having back and forth mini-conversations, changing the topic, and generally having a “normal” group interaction. I can not do that most of the time, especially with people I do not know very well. One of the main reasons I even went to the meeting was to get a break from that kind of thing.

I am not sure how I would make it better next time. About half the people in the group did not seem to have a problem with how things were going, and the other half did not speak very much, if at all. The group leader is a great guy and he did make an attempt at giving the quiet folks a chance to speak. I appreciated it, but could not think fast enough when the opportunity was given.

It makes me worry that I will never be able to have comfortable social interactions. I like people and can usually talk with someone about a topic that I know a lot about like computers. I can process information about computers quickly. It is a language I understand.

I can not keep up with a conversation that changes focus and has no order. I do not know the rules of speaking in a group. When do I say something? Usually I try to wait until someone is done speaking, but almost always, someone else says something before I can. I hear things delayed, so there is no way for me speak right when someone else stops speaking.

It is also hard for me to say what is in my head when it is my turn to speak. The words get stuck and my mind goes blank. It takes so much effort to even spit out a basic outline of what I was thinking. I can’t just do it, Yoda. I can try. Once in a while it works. Always, it is exhausting.

The words jumble and crash in my head. I have software that lets me create flowchart-like images of what is in my mind. At the click of a button, the software will immediately turn it into a formal outline. I wish I could install that software in my brain. Do other people have a natural ability to do this? Is it something they learn? Do they already think in straight lines and not even need this software?

I will probably try another meeting. I wish I could think of a way to make it easier. I think part of the purpose of the group is to practice social interaction in an environment where others will understand the pauses and silences.

I appreciate the fact that I do not have to speak if I don’t want to. I usually don’t want to. But it is not because I don’t have anything to say. It is because I lack the ability to make my voice speak for my brain. It frustrates me terribly and even causes me to question Yoda. If Yoda does not have the answer, who does?

Excellent Asperger’s Article — 07/23/2007

Excellent Asperger’s Article

My friend d has written an excellent article about living with asperger’s. I can relate to much of what she said in the post and I am guessing that a lot of people who visit LBnuke will too.

The article is called about asperger’s syndrome, in plain english. Definitely worth the click ๐Ÿ™‚

Aspie Dinner — 05/27/2007

Aspie Dinner

Friday night I went out to dinner with the people from the asperger’s meetup group that I’ve been to a few times. It was lots of fun. Really nice people. I liked it way better than meeting at someone’s house. Less pressure somehow and I didn’t feel trapped like I sometimes do.

The dinner was to celebrate someone’s birthday. A lot of people came. We talked about random things, which is pretty fun with a group of people who each seem to have an unusually large number of random facts stored in their heads.

The best thing about it was that I felt normal. I know that going out to dinner with a bunch of people is normal, but usually it is very uncomfortable for me. I can hardly ever keep up with conversations and half the time do not understand what I am supposed to do. If I have something to say, when is the right time to say it? I don’t want to interrupt someone who is talking and I am usually not organized enough to talk right when the little gaps in conversation occur. There isn’t enough time to process the last thing that someone said in that small amount of time and by the time I do, the conversation has moved on.

It was different in this group. It is different every time I am with a group of autistic people. The rules are different, or at least they have more leeway. There is way less fluff (words with no real purpose being constantly chattered to avoid silence). There is more patience. It is easier to keep up. I don’t think it is because people were talking any slower than in any other conversation. Sometimes that is the case in groups of autistic people, but not on Friday night. I am not exactly sure why it is easier. Maybe because there is less fluff to filter out? Does anyone have any idea what makes it easier?

I think part of it is that there is no pressure to be “normal” about things like response times, and having trouble speaking is not such a big deal. It is such a nice change from feeling completely uncomfortable and wanting to leave! My head didn’t get loud like it often does in groups of people. Usually, all voices start blending into a mishsmash of sound like if you were changing radio stations very quickly. Being confused from the mishmash makes it hard to focus and then other distractions like light, colors, people, and a million other things get mixed in too.

I don’t know why none of that happened on Friday night. It almost always happens, especially when I am with people that I don’t know very well. I wonder if it is because I was less stressed because of not having to try so hard to keep up and fit in. Whatever it is, I liked it a whole lot. I feel like I got a taste of how the other half lives. The half that can just do things easily. I like my life a whole lot and wouldn’t trade it for anything, but I do get tired of so many things things that are supposed to be easy being so hard.

On the other hand, some things that are very hard for other people are easy for me. I guess it is a tradeoff. I hate when things are not logical. It drives me crazy. For real, not like the figure of speech. People are not always logical. On the flipside of that, I love to work inside of a logical framework. It brings me a kind of peace and gives me a break from all of the things that don’t make sense.

I spend a good part of every day coding; looking at hundreds of lines of words and symbols that make complete sense. There is no ‘reading between the lines’. It is what it is. When somethings goes wrong, it is usually because of an error in logic (or syntax) that can be found and fixed. In the words of the wordpress site, ‘Code is Poetry’. I think that is true.