LBnuke

Today I am 43 and having an awesome birthday. Last night K took me to see Fiddler on the Roof with Harvey Fierstein at the Golden Gate Theater in SF. It was awesome! I think it is possible that he was born to play Tevye. Perfect. I was really wishing my family was there too. We used to listen to the 8-track of Fiddler on the Roof in the car all the time when I was younger.

Not sure what I will do the rest of the day. Kind of happy not having a plan. It is nice getting to spend the day with K Going to She’s Geeky for the next 3 days at the Computer History Museum in Mountain View. No idea what to expect, but I love the idea of it! Had to miss Design4Drupal at Stanford last weekend. Went to the first session and then found out I had to work. It would have been a great opportunity to learn from some of the best, but it will also be nice to have some money! Luckily, DrupalCon is in San Francisco this year, so I will still be able to get my fix.

Ok, back to my regularly scheduled birthday now

Harvey Fierstein in Fiddler on the Roof

Sometimes it is hard to be an aspie. I am very lucky because no matter how hard things get sometimes, I have people who can, and do, help me out. If it weren’t for those people, especially my family and Karen, I really don’t what my life would be like now. It is likely that I would be homeless or dead, but instead, I am happy and warm.

Most people are not as lucky as me. My friend aspietalk is having a very hard time and will be homeless in a couple of weeks. She has recently started to get connected with services that may help, but the process of getting help is slow and painful. Tons of red tape and disorganization that is difficult for even the most healthy and organized of people, and seems to be purposefully impossible for people who face various challenges due to health, psychology, and/or life situation. I will not rant about that now.

I am writing this to let people know about aspietalk’s situation and give a shout out to anyone who may be able to help with a donation to help her get through this time without ending up homeless again. She has been through too much for too long and really needs the help of kind strangers right now.

Please visit her site and use the PayPal Donate button to give what you can. While you are over there, I recommend reading her posts. She has a really amazing way painting pictures of her thoughts and experiences with words.

Writing on the iPhone. Hard to breathe. Shaky. Strangely okay besides that. Sometimes writing helps. Been very busy lately. All Drupal all the time. Besides from the insane learning curve and non-intuitive UI, I am in awe of its power and flexibility. After more than 15 hours of video tutorials and reading tons of docs, I am finally understanding how it works and how the code is organized. I am learning while building a site for an awesome organization. Will link to it when it is done. If all goes according to plan, it will launch around Jan. 1st, 2010. Not mentioning the org. because there is a board and I don’t know if things like that have to be decided about, but if someone who knows the answer and wants to post it in the comments, go for it I haven’t used Drupal to build a site since version 4.1 other than keeping my test site updated. Been wanting to learn it for real for a few years so very happy to finally get around to it. Still, it makes me appreciate the simplicity and clean code of WordPress even more than I already do. Been having some small jobs besides from that.

Me & K went to Monterey for K’s 40th birthday and had an awesome time. Happy birthday K! We went to the Monterey Bay Aquarium to see the seahorse exhibit. It was amazing. We also saw lots of sharks and rays and other random sea creatures. We stayed overnight at a nice bed and breakfast and got home the next day in time to give Halloween candy to kids. Not so many kids this year.

Still hard to breathe but not so dizzy anymore. Sometimes it is kind of annoying to be me but most of the time I like it. Enough writing for now. I think it helped some.

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. It’s only recently that I’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, “The 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.”

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.