LBnuke

Amanda at Ballastexistenz has written an excellent post for Blogging Against Disablism Day describing what it is like to be autistic and taking a look at the trend of accusing people of using autism as an excuse for having poor social skills, among other things.

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.

photo credit: Spoungeworthy

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?

Maybe that is an unfair title. I think that most of the time, I am not an idiot. But there are a few things that I am repeatedly stupid about and no matter how many identically bad experiences I have, I do the same thing over and over again.

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.

It is so hard to do things lately. Too hard. Hard to think. Hard to work. Hard to play. There are very few people that I can stand to be around. The rest make my skin crawl.

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.

Today is the 8 year anniversary of K’s and my first date (Thursday is our 4th wedding anniversary ). Difficult times and all, these have been the best 8 years of my life.

K has changed my life in so many ways and opened my mind and heart to possibilities that I never thought were possible.

Before I met K, I had never wanted to live with anyone other than random friends and strangers. I thought it would drive me insane and even thinking about it put me into an immediate state of panic. For some reason, that did not happen when I thought about living with K, and I have loved every minute of it since the first day she moved into my house in Berkeley (with aforementioned random friends and strangers). I have loved it even more since we have gotten our own house.

A few other things that have changed:

• People that I care about now receive holiday and birthday cards.
• I can be myself at home. For the most part, I am myself wherever I go, but much shyer and constantly aware of trying to appear normal. This means expending tremendous amounts of energy trying to focus on what is going on around me and making sure I don’t do things that make me look ‘weird’ even if they make me feel better, like rocking back and forth or jumping up and down.
• I have done things that I would have never before thought possible like going to Europe and enjoying a surprise party.

There are many more things, but I will not list them all here. I will say that these kinds of things happen because of a kind of trust that I have never had before.

I have been thinking a lot lately about the relationship between truth, logic, and trust.

Over the years, I have learned that logic can be situational. That lesson has saved my sanity more times than I can count.

I do not necessarily need things to fit into my own logical framework, but I do need them to fit into SOME logical framework.

I have a lifelong fascination with World War II that is focused on trying to understand the conditions in the world that allowed the Nazi Party to come to power and exterminate over 10 million people and how the US could nearly wipe two entire cities and their mostly civilian populations off the face of the earth by dropping atomic bombs on them.

I have come to the point where I can understand the desperation that would allow people support the Nazis, and the fear of punishment or death combined with feeling powerless that would stop them from speaking up. I do not think I will ever understand the inhumanity of what the Nazis or US government did to so many innocent people.

This kind of situational logic can make sense of things that would otherwise seem completely illogical. Unfortunately, it can not make sense of everything.

One thing that I have learned from being with K for all these years is that there can be truth without logic. This has been one of the hardest things I have ever learned and it is still very difficult to accept it at times.

Here is an example:

Truth A: I tell K that I hate surprises and make her promise never to throw me a surprise party. She agrees.

Truth B: After knowing Truth A for years, K throws me a surprise birthday party.

When I think about this, it seems completely illogical. Why would she do something that I specifically asked her never to do?

But nothing is that simple. There are other truths to consider — other variables and frameworks that affect the situation:

Truth C: K loves me and wants me to be happy. She is aware of what is going on in my head and in my heart. She would never do anything to hurt me.

Based on my simple logic, these 3 truths can not coexist and all be true. But they are truths, so they are true. This tells me that I need to look outside of my own logical framework to understand. Understanding things is very important to me.

Variable 1: Internal logic - In a closed system, there can be internal logic. Every person has their own system of internal logic. It is closed in the way that everything affects it and you can not undo things that have already happened. It is open in the way that it is constantly changing as new information is entered into the system.

In the case of this example, Variable 1 is K’s internal logic. This is my interpretation of that logic at work:

Truths:

• Lori does not like surprises and has asked never to have a surprise party.
• Lori has had a very difficult year and has been much more isolated than usual from people.
• Lori is sad and doesn’t understand why people would want to be friends with her because she doesn’t like to be with people very often and is not always so good keeping in touch with them.

K’s Internal Logic (as interpreted by me):

• It is Lori’s 40th birthday and it needs to have a proper celebration.
• Lori has friends that love her just the way she is. There are reasons for this that Lori easily forgets when she is feeling bad.
• I will throw her a surprise 40th birthday party so that she will know that she has friends who care about her. I will do it in the least stressful way possible - Have the party at home. No one yells surprise.
• It will make Lori happy.

In this framework, it is completely logical to throw me a surprise birthday party. Even though it was totally outside of my own logical framework, the party had its intended effect. It made me happy. I had a great time and I was reminded that I have great friends that care about me.

My own completely logical logic would not have led to these conclusions. Sometimes, logic is not completely logical, especially when there are human beings involved. It is things like this that make life very confusing.

Thinking about all of this makes me realize the importance of logic and truth and how it can be especially important to autistic people that have a hard time deciphering hidden information. By hidden, I mean that it is never communicated directly. This missing information can be the difference between understanding and trusting someone, and isolation from people because of not understanding or trusting them.

To a person who takes things literally and is not so good at ‘reading between the lines’, understanding the logical framework of something can be very important. It seems to me like many people automatically understand things based on a shared logical framework that I have never had. It is the framework of human interaction and includes a set of common beliefs that seem illogical to a person who is not operating within this framework. I am not sure if other people have to work so hard to make sense of these things or if making sense of them is even so important to other people.

K is a person who makes sense to me and a person who understands me. That is a rare and beautiful thing and there is not a moment when I do not know how lucky I am.

One more reason why K rules — She just got us tickets to the sold out Grateful Dead show (to support Barack Obama) at the Warfield tonight! She checked online because sometimes they release tickets on the day of the show. Genius! The show was sold out again a few minutes later.

Happy Anniversary, K!