Confusion, Rambling, and AASCEND

I am so confused. About everything. One minute I think the meds are starting to finally kick in, and the next that I will have to stop taking them because the only effects are bad ones. I suppose it is a good sign that I occasionally think they are working. It has been a very long time since that thought even entered my mind.

Today, me and K went to the AASCEND‘s 6th Annual Conference On Autism and Asperger Syndrome. For the most part, I am glad we went. It is always good to be around other autistic people. It reminds me that I am not alone. I still need to be reminded.

It was great to hear from the organizers of different programs around the country. There is a lot being done in many different areas. One of the most exciting ones to hear about is all the training that is being organized for teachers so that they know how to identify and deal with autistic children. That alone could be enough to help improve the quality of life for many children and their families. There is also training being done for police and other groups that I can’t remember at the moment.

I got to meet a couple of people who I have only met online or by email. I was too overstimulated and shy to be able to talk to them for more than a quick hello, but it was nice to get to meet them in person. There were lots of nice people who I also couldn’t talk to.

In the afternoon, there were different sessions going on. For the first one, we went to the ‘Asperger’s/Autism on the Job’ meeting. The people on the panel were all somehow successfully employed. They told stories about jobs that haven’t worked for them and about how they ended up where they are. The conference was running late from the beginning, so unfortunately, there was not time for too many questions at the end.

People on the autistic spectrum are so different from each other, but also face a lot of the same challenges. I have a completely unbalanced set of skills for running the business that I want to run. I can make websites. I have the technical skill and knowledge required to satisfy a range of clients. On the other hand, I do not at all have the business, organizational, and especially the “people skills” required to run a business. On the third hand, it is nearly impossible for me to work a ‘regular’ job where I can not make my own schedule and have control over other things that keep me sane and functioning.

After 3 days of skills assessment and vocational testing in San Francisco, I was told that I ‘fall in a crack’. I tested high in the technical areas, and that is why the dept. of rehab is paying for me to take classes. I tested so low in other areas, that they would not pay for me to take business classes because they didn’t believe I even had the ability to learn these skills. I don’t disagree. It was pretty much the same assessment I have gotten since first grade. Visual, non-verbal. It seems that a lot of autistic people fall into a similar crack.

The next session we went to was called ‘The 4 Steps of Social Thinking’ led by Dr. Michelle G. Winner. I had mixed feelings about that one. I think I understood the basic idea of what she was talking about. From what I could tell, she was saying that autistic people do not understand many of the social rules that neurotypical people understand and follow almost unconsciously. She said that nt’s are constantly (as heard through my ears; not an actual quote) “thinking about what other people are thinking of me in response to what i am thinking of them…”, and that autistic people were always thinking these things too. This seemed like an impossible level of complexity for a person who expends large amounts of energy trying to understand and follow the basic rules of social interaction, let alone worry about the effect it is having on other people and how that effect is effecting the other person’s thoughts of them. At first, I thought she was totally wrong and had no idea what she was talking about and got mad and insulted. I was glad that a couple of other people in the audience were thinking the same thing and told her so.

On the way home in the car, Karen and I were talking about it, and Karen was saying that I do think about that too because I am always trying so hard to act ‘normal’ in public because I don’t want other people to think I am a freak. That is true, but it is still hard to imagine having so many levels of that happening all at once and all the time. I also got the feeling that the speaker thought that the best way for autistic people to get along in the world is to learn to assimilate. She may be right, but I was kind of offended. She spoke about how she could manipulate someone into talking about a topic that she wanted them to talk about like that was a good thing. To me, it seems like an unnecessary and dishonest head game. Why is it so bad to just say what you are thinking without messing with someone’s mind? < /end rant >

Hearing Karen’s explanation and thoughts about it, and trying to focus on what the speaker had said without being annoyed and insulted, I can really understand that her attitude is mostly based on practicality. While it would be really nice if people could just do and say what they want, it is not something that works in the current reality where it is assumed that if you don’t understand and/or follow the rules of social interaction, then there is something wrong with you. Knowing what these rules are and how to follow them can be critical when it comes to things like getting and keeping a job, interacting with different types of people, and a million other things that can lead to opportunities that may not be possible without these skills.

I am open to the possibility that I completely misinterpreted this woman’s presentation. Her intentions certainly seemed good, and she appeared to really care a lot about the people she works with and be passionate about what she does. It was the last session of the day, and processing information was not my best skill at that moment.

I don’t remember much after that. Me and K were both pretty anxious to get out of there and go home. K had a party to go to tonight. There was no way I could deal with any more people today, so I stayed home and played a video game and rambled out this story. This is one of those occasions where I really wish I had a friend who I could just hang out with and do social things that don’t have any requirements or expectations. I don’t know too many people like that.

I recently got back in touch with 2 friends from high school who I used to do that with all the time. I miss them. I knew people like that in Buffalo too. Some of K’s friends from Baltimore are like that too. I’m not sure what is up with the bay area. I know that part of it is that I am antisocial by nature, but still really like people and want to have relationships with them, but it is also something about this area. I am not sure if it is the bay area, the west coast, the ‘alternative’ community, or what, but it seems very hard to find people who are happy to just chill out and have some beers (or whatever) without turning it into some kind of group therapy session. Maybe I just hang out with too many therapists 😉 It seems like guys have an easier time doing this, but I have no facts to back that up. Starting with those 2 friends in high school, and up until I moved to oakland, I was spoiled by being in situations, usually living in group houses, where I didn’t have to work to have social interaction. It was just always there. Other people organized it, and I had no responsibility to attend or to stay. I can’t say I would want things to be like that again because it is hard to live with so many people. I just miss having one or 2 people to hang out with where it doesn’t take so much energy; where it is stress relief rather than stress inducing. Being with Karen is like that. There have been other people like that. I wish I had more people like that now.

8 thoughts on “Confusion, Rambling, and AASCEND”

  1. i know what you mean about ‘why can’t we just say what we mean?!’ … probably why i hide in my office at the tech college where i work.

    i get along w my students more than w my colleagues becos they think it’s funny and a good surprise when someone cuts thru the BS with them. i’m afraid to do that with most colleagues.

    i just wanted to say that this ‘just hanging out’ atmosphere i have found in SecondLife, of all places… w autie friends, though. email me about it if you want.

    PS sorry i have not made you any pics for AutieBlogger yet. got overwhelmed w paperworks.

  2. Hi natalia 🙂 No worries about the pix! There is no deadline. That’s cool that your students appreciate your straightforwardness. Maybe it will inspire them.

    That’s funny about seondlife. It makes perfect sense. I’ve only played once. Actually, I created a character and then stood around in the entry area. I had no idea what to do next. I just went and looked at it again, and am still just as clueless as the first time. Perhaps I will have a look at the instructions. I might email you for some help if i can’t figure it out.

  3. I have a brother with asperger’s who lives in palo alto. He just got fired from a third job in 2 years. He needs to replace his therapist with an asperger’s specialist. Can you recommend one?

  4. Hi Dave,

    I don’t know of anyone, but you may be able to get a referral from AASCEND. When I was at the conference, they were talking about a new network called ANGELS, which also may be able to help.

    AASCEND only offers services for San Francisco as far as I know, but they have lots of information about other organizations. I’m not sure what the scope of ANGELS services is.

    Good luck to you and your brother in finding someone.

  5. It’s interesting because I think that there are a lot of neurotypicals who also have a hard time with basic rules of social interaction…or have the ability to present information in a way that other people can hear it. And it is a very high level of complexity, especially when people become more concerned about what other people think of them than anything else. It takes a lot of brain space that could be used for other things, probably.

  6. It is kind of nice to know that other people don’t totally get it either. Especially nice to know that not everybody really thinks like that! Pisses me off again, though.

    That lady was speaking as an authority on social thinking to a bunch of people that don’t generally understand it AND who often take things very literally.

    Still probably not fair to blame her for my confusion, but I am in a mood and facts are secondary.

  7. I appreciated your blog about the speaker. My son was recently diagnosed as AS or autistic, still honing the diagnostics. I don’t think it is healthy functioning for anyone to worry excessively about what other people think of them. Perhaps women suffer this more than men, the desire to please and be approved of? I do agree with you in your feelings of anger, I would have been angry to hear these stereotypes and narrow views being touted as “normal”…good for you for thinking for yourself and hearing your own feelings.

  8. Thanks. Good for your son too that you feel the same way! I think you are right that it’s probably worse for women, but men get it bad too. It seems to be the way of society for people to judge others according to arbitrary, often illogical standards. People judge themselves according to them too. Maybe that is the worst thing of all.


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