Hard to Manage

Growing up I always felt like I was living on quicksand, like nothing was solid and secure. I felt that things were wrong in my family but everyone else seemed unable to tell. It made me feel like I must be crazy and the mixture of feeling so insecure and unable to get a handle on the world made me lash out. I never lashed out at school, I rarely lashed out at home, that I remember. When I did lash out though it was a doozy.

Somewhere along the way I began to walk out of my house during these melt downs and just leave. That was fine when it happened during the day and I somehow found my way home by night but it was a problem when it happened at night and ended with me wandering the streets alone at night not knowing what to do. I wanted them to come looking for me so very badly, to show that they cared enough to come and ask me to come home. They never did.

On the last night that I went on one of these melt down walkabouts I was picked up by the police, my parents had reported me as being a runaway/out of control. When the officer called my parents they said not to bring me home, so I was taken to a short term foster home. After several days I was brought to some sort of case worker’s office for my parents to pick me up. I was so very hurt and angry, I told them I did not want to go home with them. I was sent to a different short term foster home where I stayed for several weeks.

Sometime during that time I went to a court date where I heard my mother tell the judge that something was wrong with me and she would not bring me home until they had me evaluated. I was crushed. I was very angry with them but I also found foster care to be a special kind of hell.

I have always struggled with situations where I did not know the “rules” and every family and home has their own invisible rules. I realize now that being an aspie put me at a severe disadvantage for figuring out those invisible rules and being able to fit into families. Foster care was unfamiliar people with unfamiliar rules and customs. It was in an unfamiliar place and I had unfamiliar clothes to wear and unfamiliar food to eat. Everything felt foreign and wrong to me.

So after seriously considering telling my parents to take a leap and staying in foster care while working toward getting emancipated,(which I did not realize was out of my reach at the time) I decided that I would do whatever I needed to do to get home to my familiar hell. It’s not that I was being abused at home or that my family are awful people, I really can not tell you why I felt so stressed and trapped during those years. I am still working on figuring that out.

As it turned out the appointment with the shrink was set for quite awhile after school was to start(I was going into my freshman year of high school) and my mom decided that she would bring me home to start school and would bring me to the appointment herself. I remember bits and pieces about the appointment it’s self. I remember that he actually showed me those ink blot things and I thought he could not be serious. I remember telling him that the first one looked like an ink blot several times before he convinced me to think of something else it might look like. He tested my IQ and asked me questions I don’t remember. In the end I was home when he called my mother to tell her that I was not only fine but actually very intelligent. I remember that she looked crushed by that news.

For many years I found that moment to be one of the most painful in my life. The idea that my mom was so sure that something was wrong with me, and so disappointed to find out that I was ok haunted me. What I realized tonight is that she was not disappointed that nothing was wrong with me, she felt helpless and crazy herself. As it turns out something was going on with me, I am dyslexic and have Asperger’s Syndrome. It was not learning that I was ok that caused her pain, it was knowing that I was not ok and that she had failed to find me help.

Operation Aspquiescence

Recently I’ve begun to put more energy toward seeking out more information on what having Asperger’s Syndrome or Autism means to people. What qualities I may have that spring from that wiring and what qualities I may share with other people with similar wiring.

When I found out I was likely an Aspie I had a few reactions going on. Some of me didn’t care much because I’m me and I like being me so it wasn’t a big deal. Some of me was rocked by something now so obvious that I had missed for so long and just a bit haunted by old memories of times now seen with a deeper sense of what was going on. Part of me was really relieved and excited to find that I was not crazy, that to my mind and body the sun was indeed too bright, the sounds of the world too loud and oh so many things that I can not explain.

Then there was the part of me that was disappointed. I wasn’t disappointed I had Asperger’s syndrome or disappointed to be any part of me. I was oddly disappointed to find that I was not nearly as unique as I had prided myself on being. Of course, I’m one of a kind…and one of a kind of a rather rare breed in some sense, but now my oddities are due to my wiring and there are others so very much like me! It is both a relief and a disappointment to find that I was destined in some ways to be who and how I am.

The way that I’ve come up with to describe my disappointment is with an analogy of a tool box. Imagine you are in a class and you are all given a tool box, you assume everyone is given the same set of tools and are extremely proud that what you created with those tools is very different from the rest of the class. Then you find out that actually you were given very different tools. So of course I would build something very different. I am no longer unique because I chose it, but rather because it chose me.

It took me a bit of time to deal with this realization but eventually I realized that at the same time that I feel less amazing for having built my unique parts with my unique tools I also must be grateful for the everyday things I built with my mismatched set of tools. The amazing parts of me seem somehow less amazing, while the everyday things about me that I have struggled with so much and beaten myself up over being bad at now seem more amazing.

I realize I also have to deal with the idea that I am less able to do some things than most other people. I really don’t like that idea. I was less bothered by the concept when I simply saw myself as very good at the things I’m good at and very bad at the things I suck at. The idea that I might have something approaching a disability is something I have to examine more and come to terms with.

I’m still adjusting to this new view of myself as less amazing in the parts of me I enjoy and less of a loser in the parts of me that I’ve always struggled with. I even have moments of being rather impressed with how much of those day to day things I’ve managed to do competently through a struggle I did not truly realize I was fighting.

I have decided to keep track of the moments when I suddenly realize what I am doing or feeling is possibly connected with the Aspieness of me. People talk about having “senior moments” I have “aspie moments.” The other night, I was standing in a room with people I had just met and suddenly had no idea what on earth to do with my arms. I didn’t even know I had arms before I walked into that room and now suddenly they seem to be in desperate need of being handled in some correct way that escapes me. Then my brain laughed and pointed out how Aspie that was.

I decided to begin to keep track of those moments all in one place. I wanted to make it very easy for me to do so that I would consistently do it. So I started a twitter and downloaded an application for my phone so that I can at a moment’s notice type in something I noticed myself doing, thinking or feeling that I think may be connected to my Aspie wiring. I am keeping track to help me pay attention and I’m keeping track so that I can compare notes with other people on the spectrum and see if they experience those things as well.

So far in the experiment I’m having Aspie moment’s far more often than I had thought I would and finding that the more I speak with other Aspies the more obvious it is that I am one.

The twitter that I created shows the latest update at the top of this blog theme, hopefully I will find a way to make this theme which I enjoy very much in every other way not be an issue for people with visual sensory issues…like me(o: The Twitter is also here.

Diagnosis ~ Fear

I have been thinking alot lately about diagnosis. I’ve been thinking about how I feel about accepting that I believe I have Asperger’s Syndrome without a diagnosis.

Someone on a forum today said something that clicked for me. I think that it takes courage and confidence in yourself to say “I am autistic” without the back up of a doctor or expert “giving” you that. I remind myself that even people with a diagnosis deal with people who believe they are making it up or trying to use it as an excuse for something. So I wonder if I could and did get a diagnosis…what would that change? It would “back me up” and lend credibility to what I know about myself. But I am not sure when that would be important except in my own feelings. So if I know it deep inside, then maybe the only reason to consider a diagnosis would be so that I would not have to feel like people might think I don’t know what I’m talking about. I realized that I prefer to face my fears and this feels like something I need to make peace with. I need to make peace with the fact that there will be people who do not believe me.

All through my life I have been challenged to do what I need to do even though others did not understand. It feels important to me somehow to do that with this issue even if I could or did get a diagnosis some time in the future I do not believe I would seek it until I don’t feel that I need it to “back me up.”

This is not to say that there is never a reason to get a diagnosis. I believe that what is right for me is only that, what is right for me. If it feels right to someone else that they work toward a diagnosis that would be the right thing for them.

One Step

One of my focuses for this blog is going to be exploring how being on the Autism Spectrum helps shape who I am, what I can learn about myself by learning about AS and what information I might be able to contribute to the subject from my own experiences.

I do not think that will be all that I post about, I am much more than a girl with Asperger’s and I am sure that all kinds of different growth I experience will be chronicled here.

However, right now I am being drawn to exploring the AS stuff. I am currently thinking about:

• How AS presents differently in girls/women

• How is my brain wired and what strengths and struggles does that bring me, how is my wiring different from neurotypical people

• What value might a diagnosis have and would one be possible with the current diagnostic criteria

• Is there more information out there about the sensory and emotional sensitivities AS people    have or does it all focus on the supposed “lack of empathy”

I’ve started this blog. I’ve started reading books and articles about AS. I’ve joined a forum and may look for other forums to discuss things with other Aspies and people on the spectrum. I guess this is it…time to work some stuff out.