I am not one of those people that wishes that I could be young again. It was hard enough the first time. There is definitely something to be said for ‘older and wiser’. There is no way to be younger and wiser because much wisdom comes from experience, and experience is something that is accumulated over time. I think age does matter, but somehow the reasons why have been strangely twisted.

It makes me sad that being old has to be such a bad thing in our society. Our culture is one that values youth over experience. There is a multi-billion dollar industry built on the idea that being old makes someone less valuable as a person. There are creams and treatments and washes and spas and even surgeries that can help people appear younger. The fact that it does not actually make them younger does not seem to matter. This is something I have never understood and something that really drives me insane if I think about it too much. Other cultures honor their elders and value the contributions they have made and the experiences they have to share. Why don’t we do that?

Going to stop thinking about that now. I had a great 45th birthday yesterday! Karen and I walked around at the harbor and saw lots of boats and big Navy ships. After that, we had birthday cake and played Skyrim for a while. Later, dinner of wine and pizza at Joe Squared. Awesome day, awesome night I think I am the luckiest person in the whole world.

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We are moving in 12 days and I am starting to freak out. Our house is full of boxes. Everything is different. I will miss our house terribly. We have lived here for 8 years and I have loved every minute of it.

Karen is very busy seeing people before we leave. I have seen a few people. There are more I want to see, but probably won’t because there are so many things going on and I can barely even stand to think about adding more things.

Things keep breaking. As if there weren’t enough things to do, we have added waiting around for repair people to the list. Our washer broke one day before the warranty expired. It was a weekend, but Sears let us use it because we called before the expiration date. That was very lucky. We were not so lucky about our freezer. That one expired in December. It has been leaky and not freezing things as it should. Tomorrow is the day for that repair. Spent 3.5 hours at Costco yesterday waiting for tires. Considering we will be driving almost 3,000 miles, I think it was worth the wait. Hopefully we will get out of here before we spend all our money on repairs.

Mostly I am freaking out because I can not at all picture what it will be like to live in Baltimore day-to-day. I don’t interact with very many people here, but over the years, I have managed to not be completely isolated from the outside world.

There are 3 ways that I can interact comfortably with people I don’t know very well:

1. Geek events – meetups, conferences, cons, camps, etc. It is easier to talk to people at these events because we share the same interest and excitement about whatever technology we are celebrating at the moment.
2. Beer – I like to drink a beer with people sometimes. Maybe even a scotch or Jack and Coke. Still not terribly easy, but definitely takes the edge off.
3. Martial arts – Even though I have such a hard time talking to people, for some reason, I usually have an easy time fighting with them. I think this is strange, but I don’t really care.

I am not worried too much about having a beer. I think that will happen on its own. I have been researching Baltimore geekery and found a few meetups, including WordPress. Hopefully I will meet new people to work with and talk shop with. I have met some really great people here through WordPress meetups and I will miss them a lot. I have also been looking for a new karate (or other random martial arts) school with weekday daytime classes. If it wasn’t for karate, it is very likely I would have no human contact for most of my waking hours.

I am lucky to know some people in Baltimore already, one of whom I am especially excited to be living near again (that is you Kim, if you are reading this). Over the years, I have met lots of Karen’s friends there and have always had a good time with them. They are very welcoming and down to earth and strangely easy to be around. Thanks K’s friends!

As each day passes, we are doing more and more “lasts”. It is possible we will do all those things again someday, but probably not for a very long time. Today might be the last time I go to San Francisco before we leave. Karen will go back next week to party with her friends. It is all very strange. I don’t like it. Still, I am looking forward to new adventures in Baltimore and am very curious what life will be like a few weeks from now.

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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.

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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.

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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.

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It is almost a year since the last Harry Potter book was released and equally as long that I have been trying to read it. I am about half way through. I know it is a long book, but at this rate, it will take me 2 years to read it. I am okay with that, only I have also not been able to read technical books, which are usually much easier. The timing is very bad because I am taking classes now.

Recap of uncooperative brain cycle: I get too busy, my brain shuts down, I end up not being able to do anything, things get bad, I stop doing so many things, I feel better, I start doing more things. I get too busy. Repeat. Forever.

When I started feeling better after cat scratch fever, things were great. Felt better than I have in longer than I can remember. Meds are working ok, I am not weak and tired, I can work, I can do karate, leave the house, etc. Great time to take classes! Only problem is that I can not read. Crap.

School has been very hard. Some of the assignments are easy because it is stuff I already know (PHP, MySQL, JavaScript) and use every day, but some of it is brand new. In order to learn the new things, I have to do a lot of reading. This is very bad.

I have been able to learn some of the new information by watching screencasts. I LOVE screencasts! Screencasts are videos of someone’s computer screen with audio explaining what they are doing. These are magical for me.

I have never been able to learn things in the traditional ways — lectures and textbooks. Either I have sucked information in without even trying or I learned by trial, error, and/or repetition. Luckily, sucking in information worked until my second year of college. College is when I learned exactly how impossible it is for me to learn in a traditional setting.

Some reasons for the impossibility of learning are:

1. Can not sit still for the entire length of a class. Will fidget with increasing intensity until I have to leave the room.
2. Can not concentrate on what is being said. Words turn into gibberish. White noise behind the clamor inside my brain. This makes note taking impossible as well.
3. Can not read required reading. Can occasionally get enough information from pictures, diagrams, examples, and captions to get by.
4. Get overwhelmed when too much is going on. Taking more than one class, taking classes and working, being in crowded classrooms, etc.

I do not know what to do now. I am taking two classes and loving them, but I am not sure I will be able to finish them because I can not read and am having a hard time thinking in general. Too many things are going on. I have lots of work to do and we have a steady stream of visitors all summer. My work is not getting done as quickly as it should because of school. Often, I end up trying to do either thing and end up not being able to think well enough to do anything.

At least there is no reading required for karate! That has been just as fun as ever

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The post goes on to talk about techniques used by autistic people to appear “normal” and includes a video that explains how it can take all day to boil a pot of water. If a picture is worth a thousand words, that video is worth a million.

One interesting thought, which I had never heard before, is that some people might choose to be non-conformist as an attempt to mask involuntary weirdness.

There can also be attempts to mask involuntary weirdness by appearing to be voluntarily weird. Since chosen non-conformity can in some circles have higher social status than involuntary non-conformity, and since it can lead to an internal sense of being in control of one’s own weirdness, even though of course the person isn’t really.

I have always been non-conformist. For the most part it has been because I have never fit in with the “normal” people and could never figure out their completely illogical rules and bizarre system of prioritizing things.

In the place where I grew up, fitting in was essential to being treated like a human being. If you looked or acted differently, you could be assured that people would treat you badly, if not to your face, then behind your back. If you were a child who was different, you were doomed to a miserable life of physical and mental abuse where people’s idea of how to help you was to make you look and act like everyone else.

In high school, I became a “burnout”. We were a bunch of misfits who hung out in parking lots and did a lot of drugs. It was the first time I ever felt like part of a group, like I fit in. I wonder if this is the kind of chosen non-conformity that Amanda is talking about.

From that point on, my friends were always part of some nonconformist group or other. The focus changed from drugs to music to peace and love to politics to computers, but the feeling of not being alone and not “having” to fit in have played a large role in my periodic decisions to stay alive and keep trying rather than giving up and killing myself.

The autism community has taken ‘fitting in’ to a whole new level for me. It is not like other groups where I share the focus of interest, but am still kind of clueless about how people’s minds work outside of that focus. It is the opposite. It is an incredibly diverse group of people with all kinds of interests that I may or may not share, a group of people that make sense to me because I can understand how they think and how their minds might take them from fact A to conclusion B.

I think that autism is a whole different way of seeing the world. Whether it is good or bad should not be a question. It affects many people’s lives to a degree where they need help and assistance with basic daily tasks, and other people’s lives in a way where they contribute things to the world that would never exist without them. Some people fall into both of those groups or any point in between. unrulyasides has an interesting post about the idea of automatically classifying autism as a disability.

I don’t really have a point to all of this right now. Reading things written by people whose brains work similarly to mine gets me thinking in a way that other things don’t. It is not that other things do not make me think. Tons of things make me think! The difference is that these things do not need to be translated into a framework that I can understand before they are processed. An entire level of energy expenditure is removed. It is nice. Still, it gets me rambling.

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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?

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The first thing is having too many things going on at once. It does very bad things to me, but I think it is unavoidable. To stop it, I would need to stop working and learn how to be happy being even more broke than I already am. I am lucky to have help from people and be able to live a good life, but I want to be able to contribute my fair share. Plus, I am a geek and geeking costs money.

The second thing is insanely undercharging for my work. I learn things from one time to the next and try to avoid past mistakes, but it still happens almost every time. I am working on a project now that has easily taken 10x as long as I thought it would, and I was already providing a huge discount. I love the site and I really enjoy working with the client, but I am making about $2/hr. again. It is my own fault too. I was happy to provide the discount. In a short amount of time, the site was created and most of the content entered.

The organization had wanted a lot of features but did not have the budget for them. I provided a list of things that could be done for their budget and all was good.

Right around that same time, I started working on another site for an organization of a similar size and with similar needs. This organization had found a great online solution that would do everything my client wanted for a relatively small monthly fee. I told him about it and we switched the project over to the new system. My job was to design the site, build the template, and add content from the old site.

This is where I become an idiot.

I did not charge extra for this even though the site was practically finished in the original system. Why not? Because I thought that it was my “fault” that we switched systems because I suggested it. I am pretty sure that does not make any sense.

As I look at the itemized estimate that I sent, I realize that I had completely forgotten about it. The estimate was great. Stated exactly what was included and what was not and how much it would cost for things that were not included.

Since the price was so low, template customization was not included beyond the very basics. This was reinforced under the ‘Assumptions’ part of the estimate which states that the design is not custom. Since then, I have customized several templates heavily and built the final one from scratch, including custom images. I also threw in a flash slideshow.

I am very happy with the site and so is my client. There is still more work to be done, but it is near the end. I did not charge him extra for anything. I had told him that I would let him know if something would cost extra. Somehow, it never occurred to me to do this.

I like my client and his organization and knew they were on a budget. There is a part of me that really wants the site to be as good as possible with whatever system we are using, and that part of me took over the job. I could have stayed with the first system and never even mentioned the new one. The site would have been exactly what he contracted for. I also could have suggested converting to the new system as a separate project with a new estimate. I did not do either of those things.

I am confused. At this point, I am sure that the only chance I have of working is to work for myself. I am lucky to love what I do and to be good at it, but how long will I keep working for $2/hr.? All of my clients make way more money than I do and I doubt any would consider working for that price. I don’t know what to do. Everybody I talk to has tons of “Why don’t you just…” solutions. They make it sound so easy, but it is not. If I could just… I would!

Rehab might pay for me to take a 10 week business course with a “tutor” to come with me and translate afterwards. I wonder if that will help. I can barely imagine being in a class for 3 hrs. twice a week plus time with the tutor, but I feel like I have to try if given the opportunity.

K is very busy at work too. We have 4 sets of houseguests coming in the next 4 months. More things, but it will be nice to see everyone. I hope I can get all of my work done by then. Not likely since my folks are coming on Friday. Oy. I better get back to work now.

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It is loud in my head. Too loud. Sometimes it is background noise. Now it is very loud. I hate it. Sometimes it gets so loud it hurts. Hurts like an ice-pick being jammed into my head repeatedly. That keeps happening lately. I don’t know why. Emergency meds help, but knock me out. Sometimes K can help. Not really sure how she does it. Thanks K.

When it is bad like that, it makes me cry. I hate that. I try to avoid it for as long as possible. Still, it almost always happens anyway. I know that crying isn’t bad but I hate it. Brings back bad memories. Crying is not bad now but it used to be. It can make everything worse if people are messing with you. Nobody messes with me now. Just my own brain. Ridiculous.

I say that I am an autistic person who does not want to be cured, but when things are so bad, I am not sure if that is true. When I woke up this morning, I was confused and disoriented and it was very loud in my head. I didn’t have enough energy to deal with it. I just wanted to wake up like a normal person does. Sometimes I want to be ‘normal’ so bad. I want to be able to work. I want to be able to play video games. I want to read. I want to be around people easily. I want to be able to make plans ahead of time. I can’t do that now. I never know what life will be like from one minute to the next. I hate that.

I am whining and complaining. I am very lucky in about a million ways but sometimes I have to get bad things out of my head. This morning when I woke up, the only way I could think of was to pound on my head with my fist. I know that is not a good way to do it. But it helps. Like cutting and burning do. I don’t do those things anymore. I think that writing is better than those other ways but you have to be able to think to be able to write. At least enough to get paper, pen, computer, whatever.

Lately it is hard to remember things for more than a second. Worse than usual. Not sure why things are like this now. Probably because there are too many things going on. It happens every time but still I choose to believe that it will be different the next time. It never is. But I can’t give up hope. Things always get better. Then there are too many things again. Then things get bad again. circle circle circle circle circle. 41 years going around that circle. It is all I know. It is not all bad. Lots of good parts too. I am rambling.

Went to the water. It helped a little. Nice day out. If there was a magic pill that would make me better, would I take it? I don’t really know. Anybody reading this who thinks about these kinds of things, would you take it? I am confused.

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