Tuesday, November 26, 2013

I'm not crazy, my mother had me tested: FAQs

But wait, Jaggy, I’ve talked with you. You have social skills. You have a normal job and are married, went to college, have friends, and spend lots of time with your family!  You don't have Asperger Syndrome, you're just antisocial.  So right and yet so wrong.  I do have a job, but I have my own office where I control my space and stimuli, and I actually enjoy what I do.  In past jobs where I didn't have that level of autonomy, I was miserable.  My last job was making me physically ill as I attempted to navigate hostile coworkers and a horrible workspace.  It took two years for my insides to stop hurting (going gluten free for a few months helped immensely).  I did go to college, but I was probably the least social college student to ever graduate.  I never went out on my own, didn't go to parties or initiate social gatherings, didn't really do much of anything but work and go to school.  While I do have friends, I have a select few that I maintain ties with routinely.  The rest of my social group is either family or my husband's friends.  So you're right, I am lucky enough to have a relatively "normal" life.  But I am not antisocial.  Asocial, perhaps, but not antisocial.  

Have you been officially diagnosed? No.

Well if you haven’t been officially diagnosed, how do you know you might have Asperger’s Syndrome? If I told you I had a cold, you wouldn't second-guess me, would you? If I said I had a pulled muscle or a broken arm or a bleeding nose, you wouldn't tell me otherwise. If I said I had been depressed or manic or addicted or tired, you wouldn't sit there and tell me I was wrong about myself, would you? I've done extensive reading and understand myself better now than at any point in my life. This fits. This works. This explains literally every aspect of my life. Self-diagnosis is not generally advisable, of course, but I’m not taking medication or altering my lifestyle. I’m simply taking in knowledge, churning out understanding, and learning how to be a better version of me in the process. It’s hard to look at the evidence and not reach an Aspie conclusion.

Will you seek a formal diagnosis? There is no easy answer here. Yes, I’d like to have that piece of paper to wave in doubting faces. I’d like to be able to point and say “see! I’m official!” But a piece of paper won’t change me. It won’t change how I interact or deal with people and situations. I’m not aware of any psychiatrists that offer adult diagnosis on the autism spectrum in my area, so receiving a formal diagnosis will be difficult. I don’t need a doctor to tell me that my arm’s been chopped off, and I don’t really need a professional diagnosis for this either. I did recently take an “official” test online: you can view my results here.

But only boys get AS, and you are a girl. When I was young, in the 1980s, the thought at the time was that only boys could get Asperger’s Syndrome. The diagnosis, if a psychiatrist had heard of it at all, wasn’t given to girls. A girl who exhibited similar symptoms--quietness, intelligence, playing alone, and being unemotional--was considered neurotypical, even positive. We’ve moved along in the last thirty years to recognizing that women experience the autism spectrum differently than men. Females can be autistic or have AS or many other new mental disorders.

Having Asperger’s Syndrome is trendy and popular, and you just want to have it. Um, no. I am not a fan of labels. Why would I want to take the extraordinary me and slap a label on it? Having a label doesn’t change who I am or give me an excuse to not continue learning. It does give me understanding and a massive load off my shoulders as I look back and realize that I don’t have to feel guilty over monologuing or embarrassed for needing alone time. Also, if you think I care one iota about appearing trendy or fashionable, you’re in for a very rude awakening.

Hold on Jaggy, Asperger’s Syndrome doesn’t exist anymore. Former Aspies have to call themselves “high functioning autistic.” Call my struggles whatever you want, classify them in the Diagnostic Statistical Manual of Mental Disorders (V!) as mere gibberish or a full-blown developmental issue. It doesn’t change who I am or my experiences. Just because a name for something doesn’t exist doesn’t mean that the condition doesn't exist.

Why did you wait so long to tell people? Whether I tell people or don’t tell people doesn’t change anything. If I do tell people, they might be more understanding and less judgmental about my oddities. If I don’t tell people, I struggle silently. Nothing changes for me either way. Also, putting this out for the whole world to see means potential future employers can read it. My hope is that they are educated about Asperger’s Syndrome and can see how me having it is a massive asset to the company. I can do repetitive tasks for days on end (hello, I quilt). It means I can organize and classify, research and distribute information. I am excellent at fixing things and saving money. It means that I might not show up to work with a smile on my face every day, but I will show up. I take initiative when I see problems, work well independently (so no need for a micromanaging supervisor, thank you), and get my work done on schedule. I follow rules. I also take criticism well, because I know I have issues and work very hard to overcome them.

Can you show me how you are as an Aspie? You’re asking me to undo a lifetime of trying not to be different. You’re asking me to let down the walls and act in a way that I struggle so much to hide. You’re asking me to open myself up once again to the kind of reactions (of disgust, annoyance, or ridicule) that I simply can’t bear for the sake of you “seeing” the real me. If my Aspieness comes out, it comes out, but I am not going to force it just to humor you. Go watch some Big Bang if you need a laugh.

I’ve heard that people with Asperger’s Syndrome don’t have feelings. There is a difference between not knowing how to express emotion and having the original feeling. I feel widely and deeply. I have the whole spectrum of emotions, and I can love with body and soul.  Just don't ask me to explain what I'm feeling or how I'm feeling.  When I figure those things out, I'll let you know.

‘Ass burgers,’ heh. Wow, original. Never heard that one before.

How should I approach you now? How can I help? Don’t change anything. I have been living just as I am in the real world throughout my life. Don’t make excuses for me (I will do that myself if I need to). Don’t think I can’t or won’t do things. Do try to understand that I need “off” time, especially after large gatherings. Know that I have to take a while to answer a question sometimes because I am trying to be proper and give a succinct response. Otherwise, nothing really changes. Treat me like a normal person, please. I’m doing everything I can to just be normal.

Are you comfortable talking about Asperger’s Syndrome? Yes, to a point. I don’t mind if it comes up in conversation, but I don’t want to be the family’s science experiment. Even if I have trouble expressing them correctly, I do have feelings. You wouldn’t like it if we talked all about your bowel movements, would you?

Wow, Jaggy, this is really brave of you to put yourself out here like this. Not really. I’m just telling the truth. I’m telling what I’ve always known, what I’ve learned recently, what I’m up to now. That has been the point of my blog from the beginning, and I owe it to myself and to readers to stick with it. I don’t really understand “brave.” I’m just getting on with it.

How long did it take you to write all of this? One weekend. I started writing about 4:00pm on a Saturday and finished around 10:00pm on a Sunday. For one more example of how much of an “Aspie” I am, I stuck it out, typing away for hours and hours on end, only taking breaks when I was bursting or starving. I’m exhausted, but now this is all written, and I can sleep with an empty head.

2 comments:

Dr. Weirdbeard said...

I'm not sure if this is the full interview I heard, but NPR talked with Temple Grandin a few years back. In the interview, Temple talks about how Aspergers people (Aspies? Whatever the term is - I'm going with Aspies) can assist themselves (or have others assist them) to reveal themselves more publicly. She also discusses that there are different classifications of Aspies, such as the engineer, the artist, and so on. She classifies herself as the engineer: You can give her a schematic or detail out a project. From that, she can pinpoint the problems (this cog is the wrong size, this line of code is incorrect) with amazing clarity and accuracy. She does this without actually understanding what the system really does or how to actually build it. She explains how once the workforce or individual understands that part about them, they can be deployed to amazing effect.

Anonymous said...

When i was reading your lines, I felt a relief and sadness at the same time. A relief, becouse it is so similar to the way I'm experiencing my life. It's actually the situation of my life. Like you I was asocial girl, who had few friends durring the school time, but no after, becouse there has to be a purpose to hang out with people. I was a student who was not invited to parties, a woman who still has to consciously remind herself to call a friend and offer certain support, becouse this is what friends do. When I give attention it's often misunderstood. It's too much or too little. Friends were leaving me, but I never figure it why.It feels like my whole life is about learning how to speak "their" language...An alien among people, it's a lonely and painful place to be. I'm on a pathway to decide weather I will do the test for autism spectrum or not. I've been self-diagnosed for a few years now. The sad part comes with the recognition, that either do you know, it's sometimes better to keep it a secret. The question is what difference does the paper makes anyway. Ok, it might lead me to the specialists, who can give me advice. But I know the advice can only be, how to learn wearing your 'masks' easly. Maybe than I'll be able to get a job, to keep my relationship and become a parent at some point...sometimes I think that might be the only way, but it hadn't worked so far, so...Anyway, Jaggy, thank you so much for your post. Nina