Sunday, March 24, 2013

Testing. Testing. Aspie or Not?

Over the past four weeks or so I've been making notes. A list of personality traits, behaviors, oddities, and what have you for both Jack and myself. Mostly, for something solid to give to the doctor. A hard copy, if you will, because when faced with the task of talking about symptoms there in the office, I'll go blank. I always do. I'm not sure I'll get to them today, in fact, there are so many they may need to be categorized and post in separate entries.

So before the traits...why did I decide to include myself in this process?  A few reasons, actually. First, my ability to understand my son's inability understand certain things was a red flag for me. Not initially. Only when I realized that no one else seemed to and I kept getting the "Why can't he just..." comments from people. Could it be just because he's my child and we share some kind of unspoken bond?  Sure. It could be. Could it be Mama Bear Syndrome where I feel the need to protect him no matter what?  Uh huh. But, again, I don't think it is. Next, I kept stumbling across the same story over and over again. Parent has questions/concerns about child/Child is diagnosed/Parent or Both Parents are later diagnosed. Genetics. In almost every single account I read, this was the case. And lastly, the online test, which you can find here.

The first test I found was the AQ (The Autism Spectrum Quotient) My intention was to have Jack take it, which turned out to be more difficult than I had anticipated. If he's not interested, he's not interested and it's a pretty long list of questions for an eight year old. While I was reading the questions, however, I was intrigued by how many related to me, although they do ask them in a backwards way. So, rather than forcing my son to sit through the torture, I let him go play his Wii and I sat and took the test. My results where off the charts. Okay, so big deal. It was one test. Maybe I didn't answer it as honestly I could have. I decided to take it again, but this time I would only answer definitely agree/disagree on those things I felt/did all the time. Not just once in a while. The results changed only slightly, still leaving me well within the Asperger range.

From there, because I can't seem to let anything go, I ended up here taking the battery of tests listed. I scored high in the Asperger range on every single one of the tests, except for The SQ (The Systemising Quotient). If I remember correctly there were a lot of workings of a railway system, trains, and engine type questions. Not surprising I would score low as I'm interested in none of that. (I'm guessing that particular test leans more toward the male species). What really shocked the hell out me, was how low I scored on the Two-Factor Imagination Scale, which basically says I have very little Spontaneous Imagination.  If someone were to have asked me that weeks ago I would have said I have a great imagination. I'm creative. I write. I paint. I make things. (Also if anyone would have asked me weeks ago..."Does Jack spin?", I would have said no. The reality? Jack spins. A lot.) After spending more time thinking, recalling, researching I realized there is nothing spontaneous about any of the things I do. There is a process, for sure. A process that includes structure and planning. The Face-Voice Battery tests were much the same. I consider myself to be very intuitive. To be able to pick up on peoples emotions/feelings when in a room. When faced with watching videos or looking at pictures and picking out the emotion of the subject, I failed. Miserably. They were just short clips and I kept thinking they were too short. I needed more information, about the setting, the context, and the subject they were talking about in order to be able to tell what the look of their face really meant. Socially, I'm ill equipped. (Unless, of course, I'm drinking, and even then, I'm probably still ill equipped,  I just don't care.) I know this and I completely expected to not be considered "normal" in that area. The rest, however, was a surprise.  (My BF agreed to take the tests as well, after I told him what I scored, so we could compare and call bullshit if needed. He hasn't yet though. He does have ADD, however, so I'm guessing all this test taking won't be nearly as enjoyable for him as it was for me)

Needless to say, all the testing and scoring raised even more questions, prompted even more research and resulted in more digging into my past. (Incidentally, the fact that I enjoyed the questions, the research and the digging is also a strong personality trait of person with Aspergers.) What it lead me to directly, was Women with Asperger's Syndrome. More reading, listening, watching and one holy shit moment after another. For the most part, it's been boys being diagnosed with this Syndrome, leaving an impression that only boys have Asperger's. This is far from the truth. Girls and Women have seemed to slip through the cracks simply because girls are different than boys. In general girls, even at their worst, are better at socializing, coping, adapting and camouflaging. It's far more acceptable for a little girl to be constantly spinning. She's a little girl. She's a Ballerina. A little boy spinning, well, that's just odd. Normally these woman are diagnosed...with something...or better yet a long list of somethings. They don't slip through entirely, they just don't normally get a diagnosis that fits.

After all my concerns about Jack over the years I was pretty familiar with the signs in toddlers and children. But what about Adults? What about Women, specifically?  Half expecting to find only slightly altered versions of Rain Man, Sheldon Cooper, and Amy Farrah Fowler, I set out  to find a profile of women with Asperger's Syndrome. Aside from learning that there is no SET profile, because just like all people are different, all people with Asperger's Syndrome are different as well, I also learned that there are some really amazing women on the "Spectrum" who I will continue to read/follow, regardless of my own findings, simply because they are Fucking Awesome.

As far as traits go, this list by Author/Comedian/Singer/Songwriter/Musician/Aspie Rudy Simone, is pretty extensive, covering a lot of the bases. I've already read two of her books and am in love with her down to earth honesty about who she is. Sam from Everyday Asperger's also has this list of traits as well as a non-official checklist that was not only fun to read, but also like looking in a mirror. Tony Attwood was also a good reference, and I've started reading his book as well.

Am I obsessed? Yeah. A little. But not for the wrong reasons. At least I don't think so. I'm aware of the dangers of "self-diagnosing" although, ironically it's usually what I have to do. I don't take my concerns to the doctor. I normally take my conclusion. If I take my concerns they will miss it every time. This could be partly my fault because, like I said, I go blank, and giving them the proper information right then and there is nearly impossible for me. (especially if it is physical symptoms and I don't happen to be having them right at that moment) Now if I take them my conclusion, 9 times out 10 I get..."yeah, yeah, you know, you're probably right." I know. You're Welcome. In this case, I admit. I don't know. I have a strong feeling, and for now I'm going with that and just gathering as much information as I possibly can for as as long as I enjoy gathering this information. (I'm doing other things too, by the way)

Next up, a more personal list of traits...or me over sharing, as usual. Whichever.

Hope, who seriously needs to get a better chair and ass cushion.

Saturday, March 23, 2013

Asperger's Syndrome, Obsessions, and other things I'm learning along the way.

I've been wanting to write something for quite a while now, but each time I would try I'd get stuck. First on where to start. Next of where to stop. I also sometimes forget that  people can't read my mind and I will leave out the important parts. Like a main dish. So...I guess this is the main dish.

It's been about a month since I've written anything here. Since Jack's behavior and anxiety issues prompted my further investigation into Asperger's or...Autistic Tendencies, let's just say for those that believe the Spectrum should be shortened to only include the severest cases. Ironically, his anxiety has eased up for the time being. It's been a huge relief, for both of us, I think. Unfortunately, it will be back. I know this because I live it.

Since I was here last, I've read four books, watched hundreds of YouTube videos, and read countless personal blogs on the subject of Asperger's. You could call it obsessive. I call it research. I call it finding answers. And answers I have found. But, with each answer came more questions. And more research. And so on, and so on. As much as I know people in my life  might wish I would "let it go", that's not possible. Aside from now finding the topic intensely interesting and the research (dare I say) fun, I've had one eye opening moment after another. Not just in relation to Jack but for myself as well. What I've also managed to do during my weeks of obsessive information gathering is remove the fear. Perhaps that comes from reading about so many women on the Spectrum and seeing myself in all of them. Not all of myself, but bits and pieces of me in each and every one of them. In any case, The A word is not a word I'm afraid of anymore. In fact, I almost feel a sense of relief. To live your whole life wondering what is wrong with you, why can't I do this? Other people can do this. Why can't I connect? Why can't I relate? Why I'm not like you..or you...or you? ...and then to find a (highly possible) reason like seeing your whole life, your whole world through different eyes. A reason that explains the Anxiety, the Panic, the need for routine, the need for order, the need for quiet etc...A REASON. One all encompassing reason. It makes so much more sense to me than assuming I suffer from Anxiety (irrational or otherwise), panic attacks, a touch of OCD, claustrophobia, acrophobia, vertigo, gephyrophobia, IBS, GERD, Chronic muscle pain, and sensory issues (to name a few). Am I really THAT fucked up that I'd require all of these multiple diagnoses? Hmm. Maybe? Although one would certainly provide an answer to the most important question of ...If you can do A...why can't you do B? And the second question Why can't you just....... (insert whatever the hell I can't manage to do here)?  And lastly...why I can't be with  a group of three or more people without a drink in my hand. I can't. I think the last time I did that I was still a child. Anyone who knows me will attest the fact that they have never seen me in a group social setting without a drink. NEVER. ever. So does that mean we add alcoholic to that list as well? No. We don't. And no, I really don't think I'm crazy. I have thought that repeatedly throughout my life (hence the name of my Blog), but after hearing, reading, watching story after story of women who seemed just as complex, I don't think that anymore.

So what do I think? I think that the "Spectrum" is wide and vast. I think that "quirky" isn't just "quirky" and that it never really was.I think that the woman who read my 101 things about me on MySpace years ago and assumed I was on the Spectrum knew something I didn't.  I think that I think differently. I think that my son also thinks differently. I think that his Father probably most likely thinks differently. One of things that sticks out in my mind upon first meeting Jack's Dad, is thinking I had found "my people". I had found someone "like" me. I have a journal entry about it somewhere that I'll have to find. I've read countless accounts of this very same thing.

What do I know?  I know that the only way to be sure is to get a diagnosis. I also know that with or without a diagnosis it will be hard, if not impossible, to make anyone in my/our life understand.  I know that Jack's Dad will  probably most likely NOT want a diagnosis. I know that with or without said diagnosis I have learned more about myself in the past month than I have in the past 30 years. I've gone back through my memories and finally feel like I know things. Like why I liked to sit and stare at the clock (forever) watching the seconds go by. I know that I feel better now than I did weeks ago, and in making just a few minor changes my son seems to be feeling better as well.

I haven't decided what direction to go in from here. I'm still discovering things that keep blowing my mind. I'm still on the fence as to whether pursuing a diagnosis is the best thing to do. There are the people that scream early intervention on one side. And the people who actually exist in my life that would most likely discourage a diagnosis. With him being eight years old, early intervention isn't much of an option. That would have been needed to be done the other two times I went down this road. But then, on the other hand, eight years old is early as opposed to forty something. I'm still not sure having a diagnosis will provide enough benefits to make it worth it, I guess. He's smart. He's an amazing shape shifter  just like his Mom and Dad. And he's also uniquely himself. Some of that uniqueness will, no doubt, cause some angst in his life, but a diagnosis isn't going to take that away.

So for now, we wait. We learn. We live. My next posts should be less general and more focused on specifically why I think what I think and what I'm discovering.

Hope, who I'm sure is about to post a Blog loaded with typos....